What’s your advice to those caring for someone that’s dying?

What’s your advice to those caring for someone that’s dying?

We recently asked our community members what’s your best advice for someone who’s currently caring for a loved on that’s dying? Here’s what you had to say.

Bobbi Carducci: Be with your loved one every moment you can. Having been at the side of my mother and years later, my father-in-law, I had the opportunity to hold them as they passed. My mother saw three angels without any wings waiting for her. Rodger had a dream that God told him his job here was done. I believe them both. As hard as it is, being with someone you love and care for as they leave this earth is a precious gift.

Linda D: Let them talk, and just listen.

Elizabeth B: Listen to them when they say they are ready. Help them prepare their way.

Rick Lauber: Enjoy what time you have left with your loved one by visiting. Ask any unanswered questions so as to not have any regrets. Respect that person’s final wishes (read and understand the Will). Make plans and decisions with other family members about a parent’s forthcoming death. Keep a senior as comfortable as possible and maintain his/her best quality of life. Expect to feel anticipatory grief (expecting the loss of your loved one) and take whatever time you need to heal (grieving is a personal process and each one of us copes differently). Find a healthy means to manage your own increased sadness and stress that you will often feel at this time.

Connie R: My husband passed away nine weeks ago while in hospice. We kept a normal routine for both our sakes. I encouraged those who knew him to stop in, cried when he cried and I was just there. Each person is unique – you’ll know what to do.

Christy P: Keep them as comfortable as possible, encourage laughter, and make sure they feel well-loved and preserve as much of their dignity as possible. That’s really about all you CAN do.

Sue P: Allow them to talk about dying.

Donna ThompsonI think one tricky aspect of caring for a dying person is balancing the ‘heavy’ conversations with the light ones.  People who are dying will want to discuss their death and the meaning of their lives, but not all the time.  They will want to live in the moment and then reflect on the past.  I think it’s really important to look for signs of a dying loved one’s comfort zone in the moment and take their lead.  In a palliative situation, the caregiver is the orchestra and a dying loved one is the conductor.

Janie B: Make the journey beautiful. Play music. Cook favorite foods – the smells speak to their memories of family and of love. Light candles and talk. Fill the room with life even in the end. You must be part of the journey.

Becky T: There is no one size fits all. At the end my husband could not hear. All you can do is the best you can with what you know at the time. Most of all be kind to yourself.

Corrine C: Live in the moment try not look too far ahead. Worry steals the joy in your life. Be there to share the time given to you and them.

What do we owe abusive parents?

What do we owe abusive parents?

Every year over 500 children in the US are murdered by their parents.

In fact, that number is a low estimate. Other organizations say over 1,500 children died of abuse or neglect in 2012. 80% of murdered children are under the age of 7. Half were beaten to death. Murdering their own children is one of two crimes that women commit as frequently as men.

In the US, children who are too young to go to school are murdered by their parents more often than by anyone else.

Of course, most children who are abused or neglected survive. Nearly 1 in 3 children have been physically abused, while 1 in 5 have been sexually abused, and 1 in 10 suffer criminal neglect (CDC). Nearly 1 in 10 witness family violence (Safe Horizon). Half of the men who abuse their spouse also abuse their children. In cases when only one parent is abusive, the other parent will often permit the abuse or refuse to believe it. Half of homeless youth are running from abusive situations, many because of sexual abuse.

Children who experienced multiple instances of abuse have an average life expectancy that’s 20 years shorter than children who were not abused.

Some parents continue to abuse their children into adulthood, while others only abuse them when they are young or for a certain period of time. Other parents leave their children in the care of relatives and re-emerge years later. Or raise their children in loving homes, only to disown them for coming out as gay, trans, or marrying outside of their religion.

That leaves millions of adult children to grapple with the decision of whether or not they should provide support to their abusive or estranged parents when they become ill or elderly.

One study of 1,000 caregivers found that 19% had been abused as children and 9% had been neglected. Caregivers of abusive parents were more likely to experience signs of clinical depression.

Some people make peace with their abusive parents, but that doesn’t mean there will ever be a healthy relationship between them. As Laura B. pointed out, many of “the abusers don’t feel guilt…[they] feel the world has cheated them and they are owed and no one has cheated them more than their own children.”

Providing care to an abusive parent could be a beautiful opportunity to build a new relationship…or it could mean putting yourself back into an abusive relationship. The potential psychological cost of attempting to care for an abuser is high. Those who decide to care for an abusive parent will need to be very aware of their boundaries and needs in order to make it through unscathed. Many abusive parents suffer from untreated mental illness and substance abuse — issues that make abuse easier to come to terms with, but suggest children should stay away until there has been adequate treatment.

Survivors who decide to distance themselves from their abusers may face judgement from relatives and friends, who often minimize the abuse or insist that family ties overcome all things — even with parents who’ve raped, beaten, and starved their children. This becomes especially complicated when only one child was abused. People fault women for staying with abusive husbands and condemn them for cutting ties with abusive parents. At least states with filial responsibility laws exempt children of parents who abused or abandoned them.

After reading The Debt: When terrible, abusive parents come crawling back, what do their grown children owe them? our community had a strong response. A number of people opened up about their relationship with their parents, the abuse they faced, and how they decided what level of care (if any) to provide.

We don’t owe them anything but forgiveness. – Rene L.

My father was a massive manipulator to keep his secret life of a pedophile away from my Mom during their 50 year marriage. I don’t believe my Mom knew but by the time all this was disclosed, she had Alzheimer’s & no longer knew me, their only child. Her last lucid comment was that she didn’t want to be in the same nursing home or buried with him. I could not have him around my children anymore. He should have been in prison but I found a facility about 90 miles away that accepted him. I went every two months, met with staff & spent 15 minutes with him. I made sure he had personal items. I would recover in a couple of weeks. I had his body donated to science, with the cremains never returned. Each situation is different. I did what I had to do for my comfort level, to honor both my Mom’s and my children’s wishes & maintain my sanity. Anyone, that has to care for their abuser, don’t allow others to guilt you into doing what is uncomfortable for you. I lost family & inheritance but the secret stopped with me & for me, that is priceless. – Lynne K-D.

Parents don’t get a free pass to treat you horribly just because they are your kin. If they refuse to respect boundaries and continually make your life miserable, I say, move on. At some point, your self preservation and your immediate family’s welfare has to matter to you. – Denise G.

It is not about being bitter and angry, but deciding to not be caught up in their drama and manipulation. My son would be the one to have to suffer the most if I had to take care of them. They take your soul and stomp to pieces any beautiful about you. Why would I expose my child to such people? That would be abusing my child by proxy. – Joanna B.

Mom’s been dead three and a half years. Haven’t missed her yet. Estranged for nine years, keeping my children away from her, I went back to care for her after her lung cancer diagnosis. Boundaries, written by Cloud and Townsend, was my life saver. She hated that I stood my ground. God knows my pain. I did the best I could with what I had to work with. – Dianne E.

I had a narcissistic father who was a big shot in the city when he worked, Only my mom and I knew how he really was. Outsiders who didn’t have to live with him thought he was the greatest guy on earth. I was an idiot, I promised I would never put him in a home. I took care of him to the bitter end. And believe me, the abuse was never ending. If I had to do it again I wouldn’t. All I have is the satisfaction of keeping my promise of taking care of both my Alzheimered parents in their own home. – Hawk B.

Both of my parents passed away with in the last 2 years I did not attend the funerals and I have not shed 1 tear… when you are not believed about being raped by your sibling for 6 yrs and they live with him there last days and left me out of the will you betcha there is no love lost here. – Brenda P.

My mom favors the others but that didn’t make me love her any less..we became close when she became ill..I love her because she is my mom. – Lotomai T.

Being related doesn’t give anyone the right to abuse you, walk on you, threaten you and then expect you to put up with more and play kissy. Forgive, yes. forget…no. – Lillian F.

I recently had to “cut off” my own abusive mother because it was just to hard and to much work for me. Why do so many people, including myself until recently, feel like it’s okay to let someone treat them bad simply because they are family. I’m 37 and have tried for the longest to have a good relationship with my other when it has finally come to a point where I cannot do it anymore, nor should I have to just because. – Tanya E.

I cut off contact my mother when I left home because I had to save myself. – Jan R.

I tried so hard to [care for my parents] because I am a Christian. Even when my father said I was a mistake and that he hated me…I made sure his basic needs were met and that he was safe. I pray he asked forgiveness before he died. I had to set up a hedge of protection around my Mom, my children and myself from the evil person he was. – Lynne D.

When either of your parents abuse you mentally or physically from your early years they don’t deserve your care – Nancy M.

Just because your parents raised you doesn’t mean you have to give up your life to take care of them. You have you in life and if nobody else understands that God does. – Laura H.

I didn’t have the best parents but I did the right thing and also what the Bible said. I honored them for giving me life and forgave them for they did the best they could with what they knew at the time. That is what love is all about. Forgiveness is a soul cleanser. – Martha R.

You do for your parents out of love and concern for their well being. When situations arise that the become angry and verbally anusive then it I’d time, not matter what age to make the decision. It is your sanity that is at stake. You cannot allow them to belittle you. You must stand. We honor them. But when they do not honor you. Your life is just as important. You must honor yourself. You must allow them to have what they want. You do not have to agree. It is to much work doing you. Life is precious. Live it for you. – Julia W.

Some posts have been lightly edited for clarity. You can read the original posts here.

Want to share your experience? You can add your comment below.

For more information on child abuse:

Adult survivors continuing relationships with abusive family

Why people discount the (adult) child and defend the abuser

Why do parents murder their children?

When parents are too toxic to tolerate

Child Help: Child abuse statistics

Child Welfare Information Gateway: Child abuse & neglect statistics

When parents kill

Experts say some children are singled out for abuse

Struggling with an abusive aging parent

Why do people sexually use or abuse children?

Why do adults fail to protect children from sexual abuse or exploitation?

A risk in caring for abusive parents

The undeserving parent

Poisonous parents: Should you cut them off?

Talking about stable conditions

Talking about stable conditions

Sometimes caregiving has wild ups and downs, but other caregivers face endless days that are the same.

I know people mean well, but asking if someone with an incurable disease is feeling better wears on my nerves. Sometimes I find myself wanting to let people know that if they find a cure they’ll be reading about it in the New York Times. I’m not the only one who’s torn between appreciation that they care enough to ask and frustration that they just don’t get it.

I’m tired of that question along with “Has he had any improvement ?” You don’t get better from advanced P.D.! – Sandra T.

Sandra, I am with you. Especially from family member who never visit or offer any assistance. I am tempted to ask, “Why”? – Doris M.

How do you respond to family and friends who regularly ask for updates on someone’s condition when their condition is stable…and not going to get any better?

I thank them for asking. – Viki G.

I usually say “he’s stable” and “we’re taking it one day at a time”. – Malki S.

I welcome the question. It tells me that you care, about me and my child. I thank them for asking and move on. Since it is my adult child that I’m caring for these days and he has been just diagnosed with a rare and incurable liver disease, lots of people are asking lots of questions. – Dianne S.

I always thank them for asking. I, personally, never tire of someone caring enough to ask about my loved ones who are chronically ill. – Holly V.

I always thank them for asking and say that he’s doing well today; some ups and downs, but well today. It’s really all I can offer and I think it’s all people want to hear. – Carolyn V.

I feel like most people forget. Or because you’re not in the hospital everything is fine. I don’t want to depress anyone or anyone to think I’m depressing so I just say we’re doing well. – Marissa A.

I say she is doing as well as can be expected and leave it at that. – Sandy D.

I’m glad when people care enough to ask how my Dad’s doing and I tell him who asked about him. – Laura C.

I just say “she’s okay” what else can I say? she’s the same as she has been. – Vicki H.

say Dad is fine, the same and stable…But I sure could use a cherry pie! – Lynn V.

I just say we’re taking it day by day. We rejoice in the good days and pray through the bad days. – Lisa-Marie G.

Oh he’s ok thanks for asking me, you can stop by if you want – Darlene A.

My default answer about my mom is “She’s ok.” Sometimes I might throw in a “Some days are better than others.” – Ana M.

I have a strict Confidentiality and never respond. If it is a Close relative I refer question to primary care MD. – Rachel C.

Truth is hard to explain..and most people don’t understand either. “He’s doing okay” is all I manage to say. – Veena M.

I say she is holding her own, really no worse no better..and also say to me that is a good thing…because she really won’t get any better and I try to not let people who ask is she doing any better questions kinda blow with the wind. – Donna G.

I put the needle on the record…needle on the record…needle in the record… – Gina Z.

The cost of unpaid caregiving

The cost of unpaid caregiving

People are starting to talk about caregiving. A recent Forbes article highlighted how 40 million family caregivers in the US are putting their own careers on hold to provide unpaid care — sometimes for decades. As a result these family caregivers could find themselves unable to provide for themselves in the future.

Our community had some strong reactions to this piece. Here’s what they had to say:

Lost careers

Savings gone. My professional career went out the door. Don’t know when I get back in the workforce if I will ever make the same salary. I know I wont be able to live off social security. It’s isolation right now. Caregivers are forgotten, like vets are. When caregivers go back into the workforce, they should be given priority, because, same as vets, they gave up their lives to take care of something/someone, very important. – Donna D.

I have been a caregiver 24/7 for my 84 year old Mom who has Alzheimer’s for over 6 years now and I would do it again without a problem. Careers and money come and go, but not our parents. – Concepcion O.

As an only child, I had to quit my $60,000+ a year job three years ago to care for my mom who fell ill from an invisible disease. She was 62 when she had to quit her job of $80,000 a year because she couldn’t make it thru the day and had to stop her education (she was near completing her doctorate degree). I now need to get a job to help support us but I’m having a hard time. I’ve been turned down for jobs because people fear I’ll be unreliable because I have a sick parent. It’s very troubling. I wish there was more support for us. – Lisa C.

It is virtually impossible to be a responsible worker in a paying job and be a full time caregiver for our loved ones – in my case, both of my parents. – Julie F.

Caregiving to special needs children also predominantly falls to women who often can’t hold down employment due to medical and special education needs. – Christine B.

I’m in my late 50’s and don’t have a clue what I’m going to do to survive my “old age.” Who’s going to hire me at whatever age I am when she passes with the employment gap on my resume? – Sherry H.

I quit work in 2007 [to care for my parents and father-in-law]. I estimate that it’s cost me about 300k in earnings, not to mention losing out on 401K matches, the lost Social Security money, and most certainly a raise or two. That’s money I’ll never get back. So when people ask me why I don’t “just sell” my parent’s house and “put Dad in a home. Besides, that money should be spent on him, not you”, I tell them this is why. My husband and I are going to need that money for our future. Are we supposed to suffer in our old age because I was a good daughter? I think not. – Carole H.

I left a retail management position with benefits and took on poverty while looking out for my father’s best interests. – Ronda R.

resume gapLost savings

I have been unpaid for about 8 years now…and at 55 years old my savings is tapped out. It is devastating…and I am still caregiving. – Jennien S.

Took care of my mother for eleven years, didn’t work for some of those years, worked part time for others. Now she’s gone and I’m in my sixties and trying desperately to make up for lost time, slogging away at a fulltime job I hate when I should be thinking about retiring, but the reality is, that’s never going to happen. I don’t regret caring for her and I would do it all over again in a heartbeat if only she were here. But I wish I had been able to take more care for my own future. – Elaine B.

Ineligible for benefits

I took care of my dad for 16 years (he passed last August). I was notified by Social Security that I am ineligible for any sort of disability (should I ever need it, God forbid), until I work my 40 quarters all over again. I’m 47 now and between not being a kid and being out of the “workforce” all those years, I am having a hard time finding a job. I don’t have friends to go out with (not that I even have money to go out with) and obviously, I never had my own family. I’m having to start all over while others I know are planning their retirement. However, as much as it all sucks, I would do it all over in a heartbeat to make sure my dad was well taken care of. – Katherine D.

I took care of my special needs child for 30 years till he moved into heaven with Jesus. I then went to work as a caregiver. Looking back, I gained a lot of memories and unconditional love from my son, but I have lost a lot. I am 54 years old with no retirement. I haven’t built up SS due not to working them years. I now work and can build up SS and a private retirement (my company don’t offer retirement) but i know in the end it won’t be enough to take care of me in my old age. – Trish M.

I’m of the belief that you should be able to care for your parents without giving up your own future. It’s all fine and well to say “money comes and goes”, but you still need it to survive in this world of ours. It would be nice if someone, somewhere realized that if we are giving up everything for our parents/husbands/wives/children/siblings/friends now, WE will be the ones going on government aid in the future. That’s 40 million more (and climbing) applying for welfare at any given time. – Carole H.

While so many of us do this caregiving thing, we go without compensation which means we’re not contributing to Social Security (through things like FICA tax withholding). I haven’t worked outside the home in 7, almost 8 years now while caring for my wife. I’m in my 50’s (she was diagnosed at 54) so I’m spending what would have been my peak earnings years appearing as unemployed and I assume that means I’m decreasing what benefits I’ll get from SS later in life (if I manage to stay alive that long!). That just don’t seem right to me. – Mark B.

Unpaid caregivers worry about

I’ve been a caregiver for my Mom for years now.. unpaid. I worry about ever being able to retire. I’m also single, and there’s always that thought about what will happen if/when I need help. Then there are the feelings of isolation when people rarely come around, and they just tell you that their lives are busy and they can’t. I bet they can make time to play games on Facebook though. – Ed R.

I haven’t been able to look for work in months because mom is a full time job. Some friends can’t be bothered to check in, but they’re masters of Candy Crush on their phones. – Nilsia C.

Caregiving is valuable experience

The pay stinks, and we don’t get vacations, but it’s a very important job. And I’d like to think it’s all made me a better person for if I do find that woman who wants to put up with me. – Ed R.

Becoming professional caregivers

Caring for my mom gave me experience to get me a job as a caregiver for someone else, I have been to school and tried other jobs but it seems like once you care for someone it really changes you and you become really sensitive to the feelings of our seniors and you want to do the best you can for them, I don’t get paid much and may not qualify for medical unless I get full time hours after 90 days, but this is the only job I seem suited best for anymore. – Clare W.

I’ve had a few family members tell me I would make a good CMA. Seniors definitely need more who care… so something to do with that may be an option in the future. – Ed R.

Difficult conversations on end-of-life care

Difficult conversations on end-of-life care

Joy’s piece on her experience caring for her mother as she died at home got a huge reaction. Our community members have had dramatically different experiences taking care of someone in their final hours. Here are some of the things they shared:

Get help

My father did t want to die in a hospital, so I being a nurse kept him at home a cared for him! The emotional toll it took on my was too much! I care for my mom with Alzheimer’s now and if she gets to ill at home I’m getting major help! Not going to go through that emotional turmoil by myself again! – Vickie K-H.

There’s no shame in finding her a home in a facility. – Tamara H-M.

Problem is that *my* best was inadequate. I believe it was better than a nursing home but I was exhausted emotionally, mentally, and physically. I did the best I could but it wasn’t good enough. My mother deserved so much better. – Elaine B.

I am so relieved to read all of your stories because it slightly relieves my guilt. My husband just passed away on Saturday. He was 64. Even though he was not quite bedridden prior to his death, he still needed constant tending to and often it was for emotional reasons more than deteriorating physical ones (which frustrated me to no end). My best was also inadequate, as you state, Elaine. I was constantly tired and short tempered. I wish that we could have just spent some time talking and sitting together but household tasks left undone loomed large and there was work to go to. I now feel guilt and pain and grief. There is no better alternative in my opinion. Just the lesser of two evils. – Tina K.

It’s work, even with help

My husband and I were her primary caregivers for the past six years right up until she took her last breath. She also had home hospice, and although they were very helpful, in no way did they replace everything my husband and I did for her. It was an exhausting, emotionally draining, raw experience, but also educational, loving, and perspective changing for me. My only regret is that I never slowed down to smell the roses. I was consumed by my “work” because there was always so much to do and no one else to do it. My aunt wanted to die at home, and I’m glad we made that happen for her. I only wish we had more time for us: me and her. – Christine S.

we just lost D’s mom a couple months ago. Our experience was similar. She actually had lung cancer and declined any treatment. The doc gave her 3 months she was gone in 2. We granted her wish cared for her at home. You do not know what you sign up for never prepared for watching her suffer so. It was hard beyond words to watch this little lady go through this. We had hospice but they only visited for a few minutes twice a week. It was all of our pleasure to care for her but we will never be the same after watching this. She was such a firecracker in her time with us. But she has left a legacy. And we are too. We miss her every day and cry often. I know you do, too. – Cindy G-S.

Your best at the time is your best

Our imagination will always make us think “there could have been more.” Give yourself time to grieve and go through all those emotions while speaking power and peace into your life. – Terri B.

I’ve concluded there is no good way to die and guilt is just something I have to live with. – Elaine B.

It’s a tough road to go. My dad died at home. It was the worst thing ever. Even if you do all you can, you feel helpless. Leave it to the hospice nurses. – Heather R.

It is such a personal decision. We kept my mother-in-law home with us and it was hard but it was a real gift. I have no regrets. I hope that all of you, regardless of what choice you made for care, will come to a place of peace with no regrets. We all do the best we can with the circumstances we’re in and with who we are at the time. – Connie C-G.

There are just so many things I wish I had remembered to do before they passed, not after. to this day I think of it and even though I don’t carry the quilt like I did before I still have some days where it still bothers me. it’s not that easy to shake the feelings off and you have to be a caregiver to understand. – Becky S.

Paperwork gets in the way

And don’t get me started on the forms! You have to have CEO capabilities to track them all, let alone figure out how to fill them in. They all ask for the same info, it should be one form, shared by all who are on the elders team…Except there is no team approach in place. – Jean O.

Creating intimacy

My partner passed at home and I created a wonderful sacred space and he didn’t want it any other way…When I realized he was passing I was prepared to play his favorite music. I dimmed the lights, lit candles, held his hand and told him I love him and gave him permission to go on. I called hospice but told them wait to come. I washed him with Castile soap and essential oil. I covered him with white cloth up to neck. Then hospice came. It was so sacred and intimate. – Marisa O.

My mother died in my home in my arms, surrounded and supported by her family and friends. She gave me a great gift in her passing, peace and love and forgiveness. And hospice was wonderful, caring and supportive. – Susan G-L.

He was kissed, we held his hands, and laid on the bed talking to him or just laid there quietly. Knowing he was not going to recover, we wanted peace for him. Relief from his discomfort. The joy of reuniting with his wife who he missed so much. I have no regrets in the way he passed. We all miss him and always will, but more importantly, he is at peace. – Sherri F-N.

There’s no such thing as being ready

I thought I was ready for this but found, you don’t just get ready. It hurts no matter what but, I’ll be ok. – Cheryle R-D.

You think at our age we have experienced just about every emotion, but we were not prepared. – Cindy G-S.

My mom passed away at home which is where she wanted to be. I took care of her with help from hospice. I was happy to help her because she was my mom and I loved her more than life. She seemed happy and content but it was emotionally hard. She passed away 7 months ago and I still have nightmares. I was with her when she passed away and it was the hardest moment of my life. Hospice was so good with us but I was always second guessing myself and wondering if I should be doing more. The whole experience was life changing-I know she went the way she wanted and was so peaceful when she took her last breath but I will always have that vision in my head-I miss her so much! – Jodie S.

Know the options

I guess it depends on location, we have many options where I live. I’ve worked in healthcare my whole life and stand behind the great care provided at every facility I’ve ever worked. Hospice is a wonderful resource as well, whether at home or at a facility. People don’t realize how much Hospice has to offer, including support for those left behind. – Corrina D.

Every family and every situation is different. At my small facility we provide skilled, ICF, hospice and respite care. Sometimes towards the end family becomes overwhelmed and their loved one comes to us for their final days, sometimes they are with us for a short time before going home for the end. Whatever is going on we welcome family and do our best to provide excellent care both to the patient and their families. Hospice is a wonderful resource that I can’t recommend enough. – Laura L-B.

There are some great hospice nurses and staff out there and I thank god for sending me my earthly angels. – Sharon N.

Most of our hospice clients choose to die at home, however, if caregiving becomes too great for the family we have two Hospice Houses available. Most everyone would like to die at home but having options is important so families can be families not caregivers. – Cheri J.

Most people don’t die in hospitals

If you are “dying,” aka have a terminal illness, unless death is imminent or you’re on life support, they don’t keep you in the hospital to die. You go home, to a hospice or a nursing facility. Hospitals don’t like to keep dying people, they are too busy trying to take care of the sick. – Corrina D.

We’ve had many patients come from the hospital as a last minute admit and die within hours because the hospital does not want them dying there. – Laura L-B.

Nursing facilities can be great

The skilled nursing facility where my guy (advanced Parkinson’s disease and dementia) spent his last year and his last days was fantastic. Truly a supportive and caring group of professionals. The Hospice team was outstanding. All cried with me when he passed away. I return often to visit the people who became family to us. – Pam T-N.

Kept my mom home with us for a couple years but it wasn’t best for her. She was too isolated and as time went on we just weren’t able to care for her. In the end she lived at an assisted living home so full of care and love. She died in that place with the help of Hospice. She actually called it home so she died at her home, an assisted living home. – Peggy F.

Just because it’s not at home, it doesn’t have to be a bad experience. The places I’ve worked go all out for a family in that situation….family are allowed to stay the night/spend as much time with their loved ones as they want, the ones who have no family are often with Hospice volunteers or staff that have grown attached to them. – Corrina D.

I’ll always regret her last weeks of life, at home, with me, unable to sleep and unable to love her because I was the full-time caregiver, just wishing she would die, when I loved her — and still love her — more than anyone I’ve ever loved or will love. – S.B.

My mom died in hospice. It was devastating, but I believe it was better for her and my family…When her doctor told her there was nothing else he could do we had to make a decision. When you have no platelets left in your blood, you can bleed from very part of your body. I didn’t think I could handle that and chose hospice. I now know it was the right decision. I was able to take he outside in her bed, feed her, kiss her and hold her hand as we told her it was okay to go into the light. I miss her, but I’m glad she is at peace and no longer in pain. – Michele G-H.

My mother with Alzheimer’s is living with me. I don’t think I could live here any more if she died in my home. – Gail T-A.

I helped with care for mom and dad, thankfully in facilities. And also my sister and a friend close enough to be called sister. I’m thankful there were trained people there to help through this horribly stressful time. Even with being in facilities a large part of the care falls on the designated caregiver. – Kathy G.

There’s no one right answer

I think it depends on the situation and the assistance received where the right place is. A difficult choice always. – Cathy P.

If we had better home care options, and integrated care in general, the last two years could be dignified for the elder, and wonderful for those left behind, no matter where they take place. – Jean O.

Truly, it’s good for some and not good for others. And it has absolutely NOTHING to do with how much you care. Some people care enough TO place their loved one in a nursing facility or Hospice house because they know there will be skilled people there every minute 24/7. Some people can’t financially afford to take off from their jobs, some don’t have enough family or enough family close. There’s many reasons family place their loved ones in skilled care facilities, but after 15 years of working in them….I can’t think of a time a family did it because they “didn’t care enough.” – Corrina D.

My father and I did home hospice for my mother. She had dementia and went in and out of knowing us. My father couldn’t be in the room when we knew it would be that night or the next day. I was alone with her when she died. I wasn’t leaving that room. I doubt she knew I was there holding her hand. I had a tattoo put on my leg surrounded by violets “One Soul From My First Breath to Your Last.” She was my best friend. My friend and her siblings had their mother in hospice in a hospital. I’m not sure which is better. They didn’t have to change diapers or wash a million sheets. But I knew my Mom was in the next room the whole time. Funny thing, she thought she was in a nursing facility when she didn’t recognize us. Other times she knew she was home. – Laura S.

You know what’s best

No one can provide you with the right answers for you…if you did what you did for her in LOVE it’s never wrong. – Susanne A.

I don’t think you can judge anyone else. What they are dying from and the health of other family members is an issue too. I loved my Dad to the ends of this earth, but him being home with Alzheimer’s and Mom also having many health problems, it wasn’t safe for anyone. We do what we have to, even if it breaks our hearts. – Kelly W-P.

My sister and I can look in the mirror and know we did the right thing for our mother. – Carolyn H.

It was difficult and tiring but I would do it all over again in a heartbeat. – Christine V-B.

Some quotes have been lightly edited for grammar or clarity. You can read the original responses here.

Speech difficulties and communication

Speech difficulties and communication

Communicating can be a challenge for all of us, but it’s especially difficult when the person we’re talking with has speech difficulties or cognitive issues. Asking someone to repeat themselves over and over can be frustrating for both people…but nodding and pretending to understand isn’t a good long-term solution.

Here are tips from other caregivers on how they make communication easier:

Take your time and use hand signals if possible. I actually made a book complete with photos for a client so his other caregivers would understand his nonverbal communications. – Allison C.

Be patient. Give the individual time to process the information (small bits of info or requests are best) and then give them more time to respond. We live in such a fast paced world, we need to slow down our communication. – Adrianne L.

My husband suffered a second serious TBI he often uses the wrong words. If he gets stuck on finding a specific word for a sentence. It helps him, if I ask him, “What you do with it?” or ‘How do you use it?” For some reason this often helps the word come “unstuck.” – Chairein C.

Ask yes and no questions. – Kathy E.

White board, photos, simple sign language. Touch mouth for hungry, tip hand toward mouth for thirsty, frown and point to body part to indicate pain. – Bobbi C.

I’ve used photo books, as well. They can be made inexpensively and they can work beautifully with many non-verbal clients. Also, dry erase boards in a pinch! – Susan K.

Take it slow and look right at the person when speaking to them because if they have a hearing problem chances are they have gotten pretty good at reading lips. – Sheila S.

Have patience, speak slowly and use pictures if necessary. My 5 yr old autistic son has speech difficulties but does understand pictures. – Danielle W.

Have a laugh! Some of the best moments weve had in the midst of this challenge are when I have ‘misheard’ things or when my husband accidentally says the wrong word. Takes the pressure off and allows us to relax and have some fun moments in the middle of huge challenge and hard days. – Sharon K.

Hand signals, facial expressions, word cards, letter cards for the person to use. Take your time and listen very carefully. – Annette C.

Be patient and don’t attempt to finish their sentences for them. – Stephanie B.

Patience and more patience. My daughter is deaf & legally blind with cerebral palsy and more. Communication for us is often a guessing game between real photo cards or her iPad to communicate. Hers is all non verbal including some signs and gestures. With others with speech issues I have had to make sure other distracting audio is to a bare minimum so the patient/student can be heard and can heard me. Try to make them feel comfortable and not rushed. – Dana H.

Word salads can be a challenge but as long as you are patient you will figure out what they are trying to say. – Kimberly P.

My mother had Als. She wrote everything down on paper. with her als she had FTD frontal lobe dementia which causes confusion in speech as far as not being able to get the letters in the right in a sentence. Orange flyswatter was orner flyswaff. They have communication devices that can help if the person has the ability. At the end it was thumbs up and thumbs down. Pictures work well too if the person has the ability. – Karen W.

So many difference scenarios here. ALS, dementia etc.. With my mom I listen until the last word and if it’s crazy I repeat it and she falls off her chair laughing, me with her. Then after we laugh I ask her again. Often we can complete the thought together. – Sue L.

My wife has MS and struggles sometimes finding her words. She said one of the things that bothers her most is when people finish her sentence. The speech therapists say to let them finish on their own. It helps them find their words. – Lori F.

iSpeech text to speech app for iPhone. When my daughters can’t speak they can type it out sometimes and the app speaks for them. – Kelly C.

My sister uses a white board (write-on, wipe-off) she has ALS and has lost her ability to speak. – Karen H.

Life after caregiving

Life after caregiving

For so many of us, our old life ended when we became a caregiver. What happens when our time as a caregiver ends?

My mother just passed away and I’m at a loss. I’ve been taking care of her for seven years, my life revolved around her. Don’t know what to do. – Michelle S.

Taking care of someone is the most fulfilling, purposeful thing we can do. And when it is over, it’s a real struggle to find real purpose. First, we need to take care of the things we have neglected at home and in our own health, etc. Then ???? It’s hard to adjust, for sure, and want to find something meaningful. I have done some volunteering and just trying to adjust to “normal” but so much seems frivolous. We can sure all relate. Hang in there, everyone! – Paula D.

I took care of my father for many years.. he’s gone now. What should I be doing? I have trouble with being kind to myself, I’ve been remembering to laugh which is a big start. – Barbara M.

I have tons of things I should be doing but also feel like I can’t move forward without him. – Elizabeth L.

I try to listen to what my body and mind tell me. Some days are very hard. Even though there are many things I want to do, I find I’m not ready yet to do them. Too emotionally drained and tired. But I’m improving. Started playing piano again after many years. – Carl U.

I gave up my job in radiology to care for my husband 24/7 a year and a half ago. He passed away at age 54 six weeks ago.I find myself trying to still do for him thinking he is at a hospital waiting for me to go see him and that he is coming home soon. He was sick with colon cancer for 13 years so the last three years that was the pattern. Home, hospital for two or three weeks and back home rehabbing till the next crisis would occur. I just cannot find my way to move forward and pick up where I left off before when he was healthy and we lived normal lives. Not many jobs open in my field now either so I feel really doomed… – Julie J.

I took care of my sister for three years… Lived with her as well.. She passed away in December, and I still feel guilty, that I could have done more for her.. I find myself now, just sitting around, or watching TV.. It’s like I am totally useless. I try to keep busy, but then the guilt comes back, and the fact that I am not depended on any more… My sister was 58 when she died, I am 50… I had no help at all, taking care of her.. I have pretty much gone into a very deep depression, and really have no one to talk too, that understands… – Jennifer G.

I was with my husband, while he passed for over a yr. with no help and spent every minute taking care of him. A trip to the store seemed like a vacation but reality would slap you in the face quickly, for too long away always sent me back to him in the floor from a fall or outside sitting on the steps where he should not have been. he was smart, he knew when i was going to the store and pretended to be asleep. I was in a rush to do everything I did and sleep was a luxury. When he passed away I left the hospital and went home, I sat on the sofa and later that day I realized I had been there on that sofa alone with no brain activity of any kind. I got up, tried to think what was next and then sat back down. The next few days were a blur and my ability to think quietly found it’s way back to me. i went about the next few days still in a hurry to everything and regardless of how many times I told myself to slow down I could not. I did not know how to sleep through the night or how to enjoy anything and laughter was hard for me. I could not remember laughing. it has been a while now and I have moved on with life but I never for one day forget how hard being a care giver is and what one goes through to bring the end of a person’s life an easy one. I know now that I will never remarry because I cannot do this again. it is the hardest thing I ever had to do. To stand by the bed of a man I was married to for 40 yrs. and hear him take his last breath, he died quietly and no one was there but me and that is how I promised him it would be. Life now is really good and no more trips in a hurry for me. Care takers are a special breed and there is a place for all of them in heaven, and it it is not care taking. – Vicky N.

I took the journey with my mom for eight years and she passed away in March. I am LOST. My mom is everywhere and I miss her smile and her kindness. – Susan Z.

I’m gonna tell you what my brother told me standing @ our mother’s grave site: “you better find a way to resurrect yourself.” after 13 years in another city and state…i’m still in recovery, still resurrecting myself..Quiet your mind. Take your time…go with the process of grieving and by all means trust God. – June W.

Your advice

As much as you can and are able, focus on being kind to yourself FIRST. – Saamia D.

I’m going to start small with a little vacation, it’s a start. – Michelle S.

The best advice I can give you is LIVE! Enjoy your life! – Vickie B.

We cared for them and when they pass away it leaves an empty space. Do things in their memory, be Active in your life. LIVE, LAUGH, LOVE and CARE. – Barbara L.

Put your caring skills to good use, but this time, care for you – Saamia D.

My suggestion is – when you are ready – find something fun with a little bit of structure. I like crafts and I am also a musician. I started to learn blacksmithing. There is something about creating an object with your own hands that reconnects you with things in a way I have a hard time explaining. – Bob B.

I do artwork, I write…many things I had no time for. – Dee S.

Could you maybe do some volunteer work at a hospital? as many or as few hours a week as you can handle. it probably help make you feel useful again. and of course, it looks good on a resume wink emoticon. I was caregiver for my disabled spouse until we separated 2 1/2 years ago (later divorced :(), I was basically forced out…. have move back in with my family, get part time jobs (until I can get to full time)… but anyways, I have found that just getting out going to work (or a volunteer position), is one of the things that has helped me the most. It allows me to forget things for a few hours, to get out of myself. and helps me to be able to move forward, even if it’s just 1/2 baby steps at a time (and trust me, there’s plenty of steps backwards, too… I have felt sometimes like I’m doing the cha-cha!!) – Rebecca H.

I promised myself after losing my mother in December… I am going to live my life and make everyday count. After taking care of her the past 11yrs and 4yrs ago I quit my job to be home with her. So now it’s all about me… Making sure I stay healthy, wise, and working. Along with having a meaningful relationship since I had to put that on hold as well. So hope you find what makes you happy and worth it! – Delphine C.

Want to read the original responses? Click here for the Facebook post. Want to share your experience? Add your comment below.

When did you know it was time to take the car keys away?

When did you know it was time to take the car keys away?

We recently asked our community members to share their experiences with taking the care keys away from an elderly or ill loved one. Here’s what they had to say, from getting doctor’s orders to advice on how to do it with humor and grace!

Medical Reasons

Paula: When my husband was using his right hand/arm to lift his leg and move his foot from the accelerator to the brake, I knew it was time. MS stinks!

Helen: It’s a very hard thing to do. With my father-in-law, he was in his late 70’s, had a stroke and almost drove into the beauty shop where he would take my mother-in-law. After that, we just took him everywhere to pay bills, groceries, etc. Sometimes you have to be the “parent” and do what is in their best interest in keeping them safe.

BobbiRodger stopped driving long before he came to live with us. Medications he took for his schizophrenia could make him dizzy. However, even after 40 years of not driving he held on to his expired license and insisted he was a very good driver and could do it if only I would let him.

Emily: Mom hit a parked car and later didn’t remember what happened. That’s when I figured out she wasn’t properly taking her medication which is why she couldn’t remember. That’s also when I learned she was diagnosed with Alzheimer’s. She had been hiding it from us. She didn’t like it that I told her she couldn’t drive. When I found out that she drove again, I went to the car dealership and had a car key cut to look like her key but it wasn’t activated so it wouldn’t start the car. I secretly replaced her key with the dummy key. She thought something was wrong with her car, but she never told me because then I would know she was still trying to drive.

DonnaI knew that my Mom should stop driving when her balance became an issue together with her diminishing sense of time and direction. Mom linked her car to her sense of dignity and independence, so it was a very difficult day when she tore up her license and gave her car to my niece.  Mom knew that ‘feeling woozy’ meant she shouldn’t be driving, so luckily when the time came, it was her decision.

Doctor’s Orders

Harmony: I took my husband’s car keys when he could not move his legs quickly due to Parkinson’s disease. Our family doctor was very supportive, and I made an appointment with him to discuss this with my husband. He was able to convince Bill that he should not be driving because of the potential danger to others. It was a tough sell, and one that I couldn’t have done on my own.

Jane: My Dad’s doctor explained it to him and hasn’t been a problem since.

Desperate Times Call for Desperate Measures

Kathy: It wasn’t so much take away, but never give back. I quit riding with him when he had an accident where he totaled two cars and messed up a third. At that time, the officer said that if anyone would have been in the passenger seat at the very least they would have lost their leg…the very least. Then one day, he was trying to find me — I was about 15 min away — and he ended up in Horse Cave, KY. It took 10.5 hours round trip to pick him up. The police found him going the wrong way on I-65. Needless to say, when I got the car out of impound, I kept the keys and he hasn’t had them since.

Pat: In our little town, we were getting friend’s reports of our mom being lost in the neighborhood. We disabled the car and then arranged for a couple of mechanics to give us a “an estimate” to fix it in the amount of thousands of dollars. They were friends of ours as well and were made aware of our unique situation.

Connie: Sadly, he was found driving 90 on a curvy country road. When family members found him, he was totally lost, very disoriented and began to throw up. I hid the keys the next day. I had a talk and told him it was time, not just for his safety, but for the “other guy” on the road. I explained that his brain was “shutting off and on and unfortunately it could happen at any moment.” He reluctantly agreed. Then we would find him looking in drawers for the keys and also trying to “hotwire” the truck. Hubby finally disabled the vehicle so he could not start it. Sad, but very necessary.

Karen: My mother disappeared for almost 3 hours in one day. Just as we were about to call police, she returned home as if nothing out of the ordinary occurred. We took the keys from her that day. She never asked about driving again.

Michelle: My grandmother got lost going around the corner to a store that had been there for decades. Pulled the spark plugs. For a few weeks, she asked every day when the car would be fixed until, eventually, she forgot.

Lisa: Daddy reluctantly handed them over. He was without a car for 3 weeks while it was being repaired. When we brought it to him we did a “driving test.” He seemed confused and a little disoriented. When we got back we asked him to give them up. Later, people told us stories of seeing him all over his little town. Some were very scary. So glad no one ever got hurt! Best thing that could have happened.

Getting the DMV involved

Belinda: We had our Mom’s eye doctor send her a copy of a letter he sent to the DMV saying she was legally blind. She even had him retest her eyes to be sure, bless her heart. She voluntarily surrendered her license but still wanted to drive to the mailbox and back up the driveway. We had to disable her van and convince her a family with three children needed it more than she did. She still misses the freedom of driving herself.

Michelle: My brother had to call Mom’s doctor and he called the state DMV after she got confused with him in the car. My dad simply could not deal.

Debbie: It was very difficult with both parents (83 & 85). We got very angry calls as we removed the car and all the keys. That was 1 year ago and they still ask about the car, but they now live in assisted living with dementia and Alzheimer’s. We drive them to church and doctor’s appointments. The DMV finally took their driving privileges away.

Accidents Happen

Jackie: After a few fender benders where the only damage was to his own car, he decided one afternoon to go to his favorite lunch spot and parked in his usual parking place. Unfortunately someone else was already parked there.

Harriet: I took my mother’s keys away after we moved her from Florida to Minnesota. Mom drove by sound. When she hit something, she changed direction, and her car looked like a battle-scarred tank. We bought the car from her, which eased giving up the keys.

Cheryl: Mom had an accident – rear-ended a preacher who was stopped to make a left turn. Demolished both cars. Was taken to the hospital along with the preacher, but neither was injured. She was around 85, I believe. We did not get her another car. We kept stalling and also made sure that we drove her wherever she needed to go. She mourned the loss of her car for a very long time. Now, at age 95 with dementia, she doesn’t recall her car, but she’s still hanging in there!

Donna: Mom was having repeated “little” parking lot accidents – an accident down the street from us where she turned in front of oncoming traffic, not using her mirrors to change lanes, etc. It was time. We didn’t know how we were going to get her off the road. But then her brakes needed replacing, and we convinced her the car was not worth putting that kind of money in it…no more driving for Mom.

Tammy: Grandma Evelyn kept running stop signs.

Self-guided

Julia: He actually handed them over (82 yr), when he almost ran his car into the neighbors living room while trying to hit the brakes and wasn’t fast enough. He wanted to blame it on the meds, but in time, he found the truth before we were ready to accept that it was that time in his life, too.

Kathy: Dad gave me the car keys. He had a very close encounter pulling out on to the highway. Sent other cars into a ditch. He is 88 and it totally unnerved him. I live with him at our house and drive him to visit Mom at the nursing home. They took care of me as a child, it is now time to take care of them.

With humor & grace

Tracey: Took my mom’s car away 8 years ago for the greater good of all society. She still brings it up ALL the time.

Sally: My mom was getting all dressed up to ‘drive to church’. Morning, noon, night, winter, summer, it was always ‘time for church’. (Not that she was religious, but she was a sort of secretary to the priest in the past and was reliving those times). One day I went to pick her up for a doctor’s appointment. She was all dressed up and said, ‘you have to move your car, they’re expecting me at the church.’ I said, ‘no, there is no church today, we are going to the doctors in my car.’ I swear, we had this little conversation 20 TIMES in half an hour. Ended up going to the doctor appointment early! Lol!

Advice

Pam: Let the Dr. handle it. It’s up to doctors to report to motor vehicles about meds the person is on. Many doctors should not have a problem lifting this burden off your shoulders. I had my father’s doctor do this in 2003, and my aunt in 2007. Was so much easier with the doctor’s help.

Barbara: Do it respectfully and preserve their dignity.

Tricia: Please don’t wait! Lives depend on it, including that of your loved one. I “borrowed” my mother-in-laws car after I witnessed a stranger drop her off at home in her own car and she said she asked when she didn’t feel up to driving home from the store. Thankfully it was an honest, kind person, but it was a HUGE red flag. Speak up and act if necessary!

RickMy sisters and I collectively approached Mom and Dad to voice our concerns and persuaded them to sell their car. I recall visiting them, riding as a passenger in their car, and being repeatedly nervous when Mom or Dad failed to shoulder-check. It was a sad day when I helped to return this vehicle to the dealership where they bought it, but there were other transportation options available to them and this was certainly the safest move.

Worrying about being forced out of your home

Worrying about being forced out of your home

Community question: My grandmother has dementia and her short term memory is almost gone. We are trying to get meals on wheels in to get her a warm cooked balanced meal. She is very stubborn and lives on her own. There is a concern from family members that the social worker the meals on wheels program sends to do the intake interview will force my grandmother to move out of her house before she decides to on her own. Is this something to be worried about? If we’re asking for help for her, does that invite them to dictate what care she needs?

 

Answer by Prudence Lowe Benjamin

The meals on wheels drivers are volunteers. They will bring the food to the door, or put it in the fridge. They may look around quick if they are asked to put the meal in the fridge, and they would report a situation of neglect and abuse, but they exist solely to help people stay in their home and do not have an agenda to force people into care outside of their home.

It has been my experience that it is pretty tough to get a person placed in a nursing home unless they have more than what they call custodial needs. Custodial care is when people do not have major medical needs for skilled nursing care and mostly need good health care maintenance.

There are a LOT of services available today to help your Mom stay in her own home these days if she is able to. My Dad was able to not go to a nursing home after some pretty major setbacks in health throughout his whole life unless it was necessary for him to go into one for rehabilitation after surgeries He was able to have home health care nurses and workers come into his home. My Step mom always had a diagnosis of Schizophrenia and from time to time she would be hospitalized. She had severe rheumatoid arthritis but had no pain because she was on powerful medications, but those powerful medications also have psychiatric effects. So what kept her degenerative arthritis in check aggravated her schizophrenia. She was a wonderful woman who raised two wonderful children, and was very involved with my Father’s seven children and many grandchildren, her family and friends, and my Dad’s fishing friends. When my Father got older and his health went downhill she took care of him. She was even good to my Mother. She cleaned house for a living and her house was always clean. She would go over to her son’s and do his laundry when she visited him every Saturday, because she loved doing things for him, and she went and did my brother’s laundry when he was sick. She was always a giving person. She had cared for her first husband when he died of cancer, and before that had to leave school early to care for her family and her own Father when he died of cancer. So she had never finished school as a young person. She had always cared for family and worked.

My Dad and she were a good pair because they accepted one another’s weaknesses, and they did everything together as they grew older. She had a hard time after my Dad died. For two years my step mom still was and she began to need more psychiatric hospitalizations. She would get very confused at night and would call the police in a panic because she believed that someone was trying to break into her house to kill her, and she really believed that people were living in the attic. Everyone thought she must not be taking her psychiatric medications. My Father and she had always had all their medications on the kitchen table in pill minders they always took them along with a few vitamins. She usually cooked low fat meals, and ate a lot of salads. The drank a lot of bottled water.

Now she was becoming confused and unstable on a daily basis, and when she got psychotic enough to go to the emergency ward, she would only get admitted to the psychiatric unit for a day or two. Then the family worked out a plan for her to go to a day program at the senior center three days a week, where she had a good time, got evaluated by a nurse, got exercise, and socialized. The other two days a week she had a home health aide come in. One day on the weekend she went with her son to his house to visit with he and his wife, and Sunday was left for other people to visit or take her out or she rested. That worked for a while but night continued to be a problem with the confusion and the wandering……So after the last breakdown time this happened, she was lucky enough to wind up transferred to a geriatric acute psychiatric hospital unit in Gardner, Mass, after her short term stay in a psychiatric hospital near her home. The Geriatric psychiatric units only care for the elderly who have psychiatric problems so they get better care there. It is in an excellent psychiatric hospital. Finally as well as getting adequate treatment, the legal aspects of her care were addressed.

Her son applied for and got guardianship and power of attorney. He was able to get her into a local assisted living center where there is a section that cares for the memory impaired. It is a locked unit so that she can not wander at night. She is not happy there yet, and hopes to come home. It costs 4,000 dollars a month for her care. They made my stepbrother sign an eighteen month contract to get her in there. Her income will pay part. The family has to come up with the rest. The plan is to rent out her house to help pay for the rest of the monthly fee if she stays. This is because if they sell the house it will not help as much in the long run. I guess the money part is tricky. There is a program paid for by Medicaid (Masshealth here in Massachusetts) that helps the person themselves hire help in their home. The doctor signs a paper saying that he thinks they need care, and then they are evaluated for the care. This program helps a lot of people stay at home if they need help with ADL’s (activities of daily living). It is certainly worth researching.

I think the lesson for us all is that we should all buy long term care insurance that pays for home health care too, and we should all do it at a young age because it really would pay off in our elder years. The other thing that can be done is if family has a family meeting and everyone decides what they can do to help your Mom. Home care requires a lot of managing and it is hard to have someone come into your home, but some elders might absolutely love it. My sister did a lot of home care and had some really lovely times helping people stay in their homes. I cared for one couple who had been in their same home since they married seventy years before! How precious that was. The bottom line is that if a person is more mentally stable and comfortable at home, they will be less confused in familiar surroundings with familiar people around them. But we do the best we can and feel good about it, because the elder’s needs come mixed into a lot of other family needs as well. I think that we just have to try to make sure they get the care that we would like to have in their situation, as much as possible.

My Mother got used to caregivers in the nursing home she went to and the caregivers loved her, but I saw a very confused woman suffer a lot in the bed next to her. I thought that her anxiety level was not addressed. Anxiety causes people to suffer. For some reason, evenings and nights can be especially terrifying for some elderly people…and although I understand that much care should be given to them not being overmedicated, I also think that they have a right to be able to rest and relax when they suffer from extreme anxiety as a result of the confused state of their mind. No one deserves to suffer. Part of being in a huge nursing home is that unless your family visits all the time, you can not get the emotional attention that you need as a person. Too many times the staff, even if they are well staffed, have enough to do giving just basic care and even important things get missed. They may be sweet and always personable and loving and comforting when they are without loved one, but they have precious little time to just sit with the elderly, and that sometimes is what elders need. They just need the comfort of someone being there. Staff may get annoyed at having to work around family visitors, but family should be present as much as possible. The happiest nursing home residents and those that are better taken care of are the residents who have family visiting.

My brother sat with my Mother in her nursing home for hours each week and saved her life three times. He was with her and noticed her crisis when no nursing staff was in the room, and alerted staff, and when staff brushed her off he insisted that she be seen by a doctor, and saved her life. That is good teamwork between staff and family. You can participate in care plan meetings for your loved one to know what is going on with medical issues and voice your care concerns, volunteer in the nursing home your loved one is in, and serve as an ombudsman for nursing home residents to help achieve better care for nursing home residents. Home care and nursing home care both can be excellent care. Sometimes you can even find a doctor that will come to your home, along with all the other home health services, but it all comes down to what insurance will pay for. You can take your loved one out for meals and even overnight for a week or two a year, you can even buy a meal in the nursing homes now and eat with or feed your relative. It is a good time to interact because they are up and more alert, and might even eat better with you there coaxing them to eat or feeding them as long as you know how.

Long story, but we are all very similar when we go through this time in our lives, and we are all looking for answers and sharing them experiences helps. The one thing that made me very angry about my Mother’s care in a nursing home was that my Mother was oxygen dependent and they made her stay in her room by giving her a short oxygen cord. She had been a walker and a swimmer all her life. Now she had COPD and she was oxygen dependent to keep thinking clearly. With a long oxygen hose she would move the wheelchair out the door and down the hall a ways, and the hose would get disconnected from the oxygen concentrator. I thought that she should have an oxygen tank and have a tank to fill that was put on her wheelchair so that she could exit her room to remain mobile. My older sister said that insurance would not pay for the oxygen canisters when she went out…so the oxygen stayed the same, and she became more unable to stand and help with transfers. Eventually they had to use a hoyer lift to move her in and out of bed. When I requested she have physical therapy bed exercises it did help strengthen her again to at least help her stand to transfer for a while. Restlessness can be used to an advantage in keeping people mobile, as long as they are not allowed to go past their limits. IF my Mom had been able to push the wheelchair around the long halls, who knows how much more able she could have stayed for how much longer? My sister took care of a man who hiked a couple of miles up and down a mountain every day and had to keep up with him…because he had alzheimer’s she had to make sure he made it home! Being as fit as we can be for as long as we can be fit is a great idea, not just for body, but for our minds as well.

What is compassion fatigue?

What is compassion fatigue?

You’ve heard of burnout, but may not have heard of compassion fatigue. As more family members become caregivers, more seem to be learning about this term. A heavy workload and never-ending tasks may make you wonder if you’ve developed compassion fatigue. What is it and what can you do about it?

Compassion fatigue is a type of stress caused by caring for others. Although burnout develops over time, compassion fatigue comes on suddenly. In his article “Burnout and Compassion Fatigue: Watch for these Signs,” psychotherapist Dennis Portnoy classifies compassion fatigue as a form of burnout.

“Compassion fatigue is caused by empathy,” he explains. “It is the natural consequence of stress resulting from caring for and helping traumatized or suffering people.” According to Portnoy, burnout and compassion fatigue may overlap.

The American Institute of Stress, in the definition section of its website, describes this acute stress as “vicarious traumatization” because it’s caused by working with those who are suffering from the consequences of a traumatic event. The symptoms of compassion fatigue can be worrisome and include:

  • less ability to function
  • more stress than usual
  • caregiver feels traumatized
  • working harder, getting less done
  • irritability
  • feeling bored
  • more sickness, aches, and pains

When compassion fatigue strikes you and your loved one both suffer. You feel like your life has become a stress mess. Having a few of the symptoms doesn’t mean you have compassion fatigue. Until I found the cause of my symptoms, I thought I had compassion fatigue. I wasn’t functioning well, was extremely stressed, worked harder and accomplished less, was a general grouch, and had two arthritic hips. After my husband and I adjusted our daily routine and I was able to get seven hours of sleep a night, my compassion fatigue symptoms disappeared. It turned out I was suffering from sleep deprivation.

What can you do about this form of stress?

Assess your self-care. If you haven’t seen a doctor in years, now is the time to get a physical exam. Ask your doctor to update your prescriptions because some may be out of date.

Stay physically active. Put regular physical activity on your daily calendar. Walking is the easiest and cheapest form of physical activity. A fifteen-minute walk, short as it is, can boost your spirits.

Try deep breathing. Also called diaphragm breathing, this technique can help to reduce stress. The technique is difficult at first, but the more you practice it, the easier it becomes.

Check your support system. Fill in any gaps that you find. Put a list of emergency phone numbers on your cell phone or by your landline phone.

Join a caregiving support group. This could be a hospital group, church group, or online community. Attend several meetings before you make a membership decision.

Include some fun in each day. Take a break and read a magazine, or watch a television program, knit for a while, or call a friend. Sitting quietly may also be fun.

Care for your spiritual self. How you do this depends upon your religious and spiritual beliefs. Ask your church for help if you need it because these are the folks who show up, work hard, and give you hugs.

Follow these steps and you can get rid of compassion fatigue before it starts.

Dealing with unsupportive family

Dealing with unsupportive family

Are your family members leaving you alone to manage your parents’ healthcare needs?

How have you responded to it? Have you tried to get them to become more involved? Have you accepted the situation or are you boiling inside?

Share your response in the comments below.

I want to ensure the highest quality of life for my mother, while she is living, and to the best of my ability. I know some day I will be able to say I gave her my all!!! That will give me peace for the rest of my life. That’s a blessing. That’s my choice. Some people make other choices. – Lauren C.A.

I was in this situation and had a multitude of feelings incl. anger, frustration, hurt, jealousy, envy, despair and all the other ugly feelings you can feel when the focus was on self. I believe that God equipped me to handle taking care of both my parents until they passed. He did not equip my siblings. They did what they could. The brunt was on me. I finally gave up and realized that I was being blessed not burdened. Once I gave into the role that God called me into there was more peace, love, compassion and kindness in my heart. It enabled me to be a better daughter and caregiver. – Gail H.

If they can live with their decisions, I can and do live without them. – Cynthia M.

I just give my Gram the care that she needs, and I don’t spend any of my time worrying or wondering over those who don’t help. – Pamela M.

I talked to a counselor several times to learn how to release the anger I felt for my brother who didn’t help. – Gail Z. R.

In life we should never expect others to “step up to the plate.” We can only control our own actions. – Pamela K.

I told my husband’s siblings if they didn’t like how I was taking care of their mom I would have her packed and to their in a half hour, are you ready? – Judy R.

 

Dealing with aggression

Dealing with aggression

What do you do with an elderly person who is aggressive? Here are tips from our community forums:

Keep your cool

When a patient is being aggressive, use a calm, but firm tone of voice – it’s fine to take a moment to collect yourself if you need to – and don’t argue. Be respectful. If you’re concerned about being accused of improper care, be sure to document things.

Check to see if they’re in pain

Aggression may be due to an undiagnosed UTI, hairline fracture, or another condition. If your patient has difficulty expressing themselves, you might have to do a bit of investigating to make sure there isn’t an undiagnosed issue or insufficient pain medication.

Imagine their perspective

What must their life be like? Many patients are afraid of dying, upset by chronic pain, and upset by loss of control. Seeing things from their point of view can help you come up with solutions, or at least help you to be empathetic when they become aggressive.

Find out what calms them down

Many people respond to music. You can put on a recording or give it a go yourself. Ask them questions about their life, make them feel like they’re more than just a number. People do better when they’re occupied, so coming up with tasks to help people feel useful and have a purpose can have a huge positive impact.

Talk to their doctor

If there’s no apparent physical cause of pain and the aggression is disruptive, talk a doctor about medications to help ease the patient’s distress. There are many medications available for anxiety, delusions, depression, and other psychiatric causes of aggressive behavior. It’s also possible that the aggressive behavior is being brought on by a medication they’re on.

Leave them be, but make sure they’ll be okay

If you’re leaving someone in bed, take steps to prevent bed sores. Rotate them frequently, either by hand or using an air mattress designed to do this. Help them to sit up and find comfortable positions, if they’ll allow it.

5 Caregiver’s favorite inspirational quotes for caregivers

5 Caregiver’s favorite inspirational quotes for caregivers

As caregivers (and human beings) a little pat on the back can sometimes come in the form of other people’s words. That’s why we include a Care Card in each issue of our weekly newsletter. Quotes are also some of our caregiving community’s favorite things on Facebook, Twitter, and Instagram.

This week, I asked our caregiving bloggers for some of their favorite inspirational quotes. What’s your favorite quote? Share with us in the comments or on our forums.

  1. via Harriet Hodgsonemily dickinson picture with hope poem

  2. via Bobbi CarducciThe Imperfect Caregivermother teresa holding a baby with quote

  3. via Rick Lauber, author of Caregiver’s Guide for Canadians

    Kahlil Gibran quote

  4. via Liz Imlerleonard nemoy quote

  5. via Aprilmichelle moran quote

Photo credit: Mother Teresa quote via imgace.com // Leonard Nemoy quote via Corporation for National and Community Service

11 Tips for taking care of someone with Dementia/Alzheimer’s

11 Tips for taking care of someone with Dementia/Alzheimer’s

What are some activities for dementia and Alzheimer’s patients that have worked for you?

  1. Teepa Snow.” – Julie R. teepa-snow

  2. “As Dad remained quite mobile, one of my favourite activities to do with him was to go for walks together. Another common pastime was reading out loud to him, something he did for my sisters and me as a former University English Professor.” – Rick L.
    silhouette of elderly man with cane walking

  3. “Traveling the world on Google Earth.” – Alicia W.picture of a pile of mini globes

  4. “Making short videos on my computer and singing or just saying ‘hi’ to people.” – Katie S.picture of man skyping and waving hand

  5. “Soft sing alongs worked beautifully for my mother. She engaged and tried to sing. I even brought the Episcopal church hymnal with me once and flipped through the pages to remind me of her favorite hymns.” – Molly D.old woman clapping with her young granddaughter

  6. “Something he did as a young boy – marbles, checkers, or cards.” – Kim R.close up of a colorful set of marbles

  7. “Sorting – nuts, bolts, coins.” – Sandra O.shutterstock_280535489

  8. “Assembling something.” – Rhonda M.minimalist image of colorful building blocks

  9. “Mom likes current events or crossword puzzles.” – Julie H.closeup of crossword puzzle

  10. “With the help of a home aide, my father-in-law and I worked for months to create a rug for his great grandaughter Ava. When we brought out the materials, he became fully aware of his surroundings and why he was making it.” – Bobbi C.picture of great grandaughter with mom and great grandfather

  11. “When my father-in-law’s memory was faltering, we’d take him for a drive in the country to see a wind farm. This unusual ‘field trip’ garnered Dad’s attention. ‘There are so many windmills!’ he’d exclaim. “And they’re all so big!” – Harriet H.image of windmills in a field

Photo credit of Teepa Snow via Alzlive

The ideal waiting room

The ideal waiting room

The waiting room starts to feel like our home away from home. All too many waiting rooms are terrible spaces to spend time in.

Architects, designers, and office managers take note – here’s what caregivers would like to see in your office:

  • a variety of comfy seating options for people of all sizes and conditions
  • enough space for everyone – there should never be people waiting in the hallway!
  • space for people in wheelchairs and using walkers to navigate
  • wifi and work stations
  • a space for kids to play with toys and games
  • a room to watch TV and chat
  • a semi-private place to relax quietly
  • a dark room with reclining chairs or daybeds to sleep in
  • outlets to charge phones and laptops
  • free refreshments
  • blankets and toiletries
  • access to a gym
  • a fish tank to watch
  • a reading library
  • a masseuse
  • lockers to keep your things
  • full bathroom with showers and mirrors
  • access to counselors, social workers, and other people to talk to

“Chemo took us from 3 to 6 hours 1 to 2 times weekly. If I were able to rest/sleep while my husband was in the best hands available, it would have been the most welcomed 3 to 6 hours of our hectic week on many occasions…” – Dianne S. C.

We know it’s possible…

“St. David’s Hospital Round Rock Texas has the nicest ICU waiting room with most of the amenities people have mentioned hot and cold drinks, comfortable furniture, a volunteer, new magazines, several areas widely separated, off the hall, nice tables and chairs for families to eat together. And it is off the main hall but without doors and at the side of the ICU so there is no walking traffic passing by gawking.” – Jeananne E.

“[The] hospital here in Melbourne for those with cancer has a quiet area for those waiting if they prefer to be away from noise – lounge chairs, soft lighting. They also supply wool and knitting needles and instructions on how to measure a square of knitting. The squares are then eventually stitched together to make rugs for homeless people.” – Jan T.

“At ETCH volunteers bring a cart stocked with toiletries, snacks, magazines, crosswords, etc hourly for waiting family to take advantage of. More than once I have personally benefitted from this service.” – Terina P.

Want to read all the responses? Here’s the original Facebook post.

10 reasons I don’t mind being the family caregiver

10 reasons I don’t mind being the family caregiver

  1. “My mom diapered my butt, it’s the least I can do.” — Beth Crandall

  2. “As Elton John said, ‘it’s the circle of life.'”– Rob Adams

  3. “Maybe Grandma will leave me more in the will…? (I’m kidding.)” — Jen Houtz

  4. “I see this as payback for that ‘poo painting’ phase I had when I was two.” — Will Thompson

  5. “I don’t want to get calls about my mamita slapping innocent strangers over the head. At least I’m already used to it.” — Charlotte Sedillo

  6. “Dad held my hair during the stomach flu despite his horrible gag reflex. I’m sure I can handle a sponge bath.” — Rick Franklin

  7. “I certainly didn’t dress myself or change my own diaper when I was little.” — Joyce Mitton

  8. “I peed my grandpa’s bed every summer I visited from about three until six. I think it’s safe to say I owe him some bed changes.” — Daniel Pulliam

  9. “Letting your dad dress himself in gloves and a scarf in the middle of summer seems more fun if done in our own home.” — Linda Bauman

  10. “Because my love is also unconditional.” — Evelyn Grimm

 

GIF Source: giphy.com

60 million different stories

60 million different stories

They estimate that there are between 60 and 90 million family caregivers in the US. There are about 6.5 million professional caregivers, according to the US Bureau of Labor Statistics. There are millions more who have served as a caregiver at some point during their lives.

That’s a lot of different experiences.

But as much as each of our situations are unique, we have so much in common. It’s time to come together. With so many millions of people providing support, there’s no reason for any of us to feel alone.

My own take is that society’s lack of understanding and support is the main thing we have in common. There is no useful etiquette for dealing with illness and disability – our own or anybody else’s. As for a support infrastructure — mostly that’s a bad joke. Beyond this, however, it seems to me that our problems (and levels of opportunity) are all different.” – Sharon P.

“We all have different support situations, different personalities, and different energy and tolerance levels. I like how this page is here for all.” – Martha K.

“Mom is my priority…as always….If I plan something, it is planned in advance with arrangements made so that I don’t have to worry, and they all know I’m just a phone call away” – Traci S.

“I am a carer for my son. He has [a genetic disorder and autism]…Yet I read this post after returning from the spa…I have a supporting husband sharing in the care and a wide church family, most of whom are supportive a few are even offering practical help.” – Nancy H. D.

“I care give for free for people that either need me full time or others that need a break.” – T. B. T.

“I never fully embraced the caregiver moniker. All I can say is I endured. I changed. I have so much to pay forward my task honoring my husband’s memory has just begun.” Lauren B. C.

“We now…are in a position to have 48 hrs of private duty [help]. I’ve recently joined a gym and make time to go at least 3-4 days a week. My daughter can never be left unattended and I was lucky enough 2 yrs ago to hire a wonderful aide, besides my granddaughter who works with her Aunt on a regular basis.” – Patricia W.

“although caregiving can be awkward and demanding, I have the most personal freedom that I have ever had in my entire life. No regular hours, and I get to spend time on my writing (I’m an author of fiction), time watching my favourite TV shows and movies, and occasional time with friends. Plus, I have a husband who loves me and is good company.” – Xanxa S. R.

“I’m my husband’s caregiver and helper due to his memory loss from combat PTSD but he is also my caregiver in all things physical for my RA & Fibro. We care for each other in the ways that we are stronger than the other.” – Carly D. R.

I’m 53. I care for my 46 year old brother who lives with me…MWF I send him to the adult/senior day center run by Catholic Services (you do not have to be Catholic to attend and it is not a church service). Nurses are on hand, they go on field trips, play games and are served breakfast and lunch. During these days I work as a caregiver for an agency helping others…Or, I can choose not to work those days and just sleep in or catch up with friends, family or my favorite tv shows.” – Lisa K. C.

My mom has Severe Dementia, is incontinent and non-ambulatory. She is is a full-time nursing home, but I go every day (sometimes twice daily) to check on her, help to feed her, pick-up or take back her laundry, make sure she is getting the care an attention she needs, is taking her meds, take her outside for walks, bring her special treats and and meals and to tell her and show her that I love her.” – Renee F. H.

Everyone who is supporting someone through illness, disability, or disease is welcome here. Are you new to the community? Introduce yourself here.

Some of the quotes were edited for length. You can read the original posts on Facebook.

Why is anticipatory grief so powerful?

Why is anticipatory grief so powerful?

Although everyone experiences anticipatory grief—a feeling of loss before a death or dreaded event occurs—some have never heard of the term. I didn’t understand the power of anticipatory grief until I became my mother’s family caregiver. My mother suffered a series of mini strokes and, according to her physician, they equaled Alzheimer’s disease. I cared for my mother for nine years and felt like she was dying right before my eyes.

To help myself, I began to study anticipatory grief. While I cared for my mother I wrote a book on the topic. Writing a book parallel to my mother’s life was an unusual experience. Later, Dr. Lois Krahn, a Mayo Clinic psychiatrist, helped me with the final version. Our book, Smiling Through Your Tears: Anticipating Grief, was published in 2005.

Writing the book made me aware of the power of anticipatory grief and I went on AG alert. I had severe anticipatory grief when my husband’s aorta dissected in 2013. My husband was literally bleeding to death. Surgeons operated on him three times in a desperate attempt to stop the bleeding. Every time he went to surgery I thought it would be the last time I would see him.
My grief was so intense I began to plan his memorial service.

Although you realize you’re experiencing anticipatory grief, you may not understand its power. Here are some of the sources of that power.

Your thoughts jump around. You think about the past, the present, and a future without your loved one. These conflicting thoughts can make you worry about yourself. Friends may notice your distraction and think you have some sort of psychological problem. You don’t have a problem; you are grieving.

Every day is a day of uncompleted loss. If you are a long-term caregiver as I was, you wonder if your grief will ever end. Worse, you may wonder if you will survive such intense feelings. You may start to feel like anticipatory grief is tearing you apart.

The time factor can grind you down. Since you don’t know when the end will come, you are on constant alert. Friends may not understand your feelings and wonder why you’re grieving if nobody has died. Explaining your feelings to others is hard because you can hardly track them yourself.

Suspense and fear are part of your life. Because you fear others won’t understand, you keep your feelings to yourself. Grief experts call this “stuffing feelings” and you may feel stuffed with worry, insecurity, and sadness. Uncertainty seems to rule your life.

Anticipatory grief can become complex. Grief expert Therese A. Rando, PhD, author of the article, “Anticipatory Grief: The Term is a Misnomer but the Phenomenon Exists,” says anticipatory grief imposes limits on your life. That’s bad enough, but as time passes, your anticipatory grief keeps expanding. “I’m tired of waiting for my mother to die,” a friend of mine admitted. I understood her feelings.

There is a shock factor. Edward Myers, in his book When Parents Die: A Guide for Adults, says anticipatory grief doesn’t have the shock of sudden death, yet it exacts a terrible toll. As he writes, “If sudden death hits like an explosion, knocking you flat, then a slow decline arrives like a glacier, massive, unstoppable, grinding you down.”

Lack of an endpoint. Although you may think you know when your loved one’s life will come to a close, you aren’t really sure. Waiting for the end can put your life on hold, sap your strength, and prolong anticipatory grief.

You feel sorrow and hope at the same time. Hope may be the most unique aspect of anticipatory grief. While you’re grieving you hope a new drug will be invented, new surgery will be developed, or your loved one will experience a miraculous turn-around. Hope can keep you going.

Understanding anticipatory grief can keep you going too. Joining The Caregiver Space Facebook groups can be a source of support and hope. Remember, you are not alone. You are in the company of thousands of other caregivers, and we can help each other.

Caregiving Tips: Managing your feelings

Caregiving Tips: Managing your feelings

Caregiving generates a variety of feelings. When doctors told me my husband’s legs were paralyzed and I became his caregiver, I felt fear. What supplies did I need? Did I have the physical strength to care for him? Where would we live? My fear turned to worry as our healthcare expenses increased. I’ve felt many emotions since then.

Your experience may be similar to mine. Like me, you may welcome some feelings and wish others would go away. Although we can’t control what happens to us, we have some control over our responses to events. In short, we can manage our feelings. These steps will help you cope with your changing feelings.

Be on feelings alert.

As you go about your daily tasks, be aware of the feelings you’re experiencing. Feelings can change quickly, so your awareness “switch” needs to be on all the time. A packed schedule may make you feel anxious, for example. A shared laugh can keep you smiling. It might be interesting to track the different feelings you experience in a day through journaling or another technique, like “Morning Pages.”

Name your feelings.

I try to name my feelings as quickly as possible—eager, disappointed, satisfied, hopeful, etc. Whatever your feelings may be, naming them helps you cope with them. Don’t worry if you can’t name your feelings right away. In time, you may be able to name them and understand them.

Make a positive and negative list.

This simple task helps you see the “big picture” of your feelings. Which list is longer, the positive or negative? If your negative list is far longer than the positive list, you may wish to join a support group or consider counseling. Sharing your feelings with someone you trust is helpful too.

Keep a feelings log.

You can do this on the computer, in a three-ring binder, or small notebook. A log is much shorter than a journal or diary, and little writing is involved. Just jot down the date at the top of the page, list the feeling you are experiencing, and the time. Next to the time, you may write a few explanatory words, such as “doctor’s appointment.” This written record helps you track feelings and determine a course of action.

Identify the source of your feelings.

It took weeks for me to realize my negative feelings and bad mood were due to sleep deprivation. At 4 a.m. every morning the alarm clock goes off and I get up to help my husband. My tasks take a half hour or longer. Sometimes I go back to sleep and sometimes I don’t. One day I went to the grocery store after only four hours of sleep, and walked around in a fog. Getting more sleep boosted my feelings and general outlook on life.

Different feelings come with the caregiving territory. You are normal. Coping with feelings is easier if you pay attention to them, name them, track them, and take some proactive steps. You’re a caregiver because you care, and that’s a good feeling!

When the invisible family reappears

When the invisible family reappears

Many families rally together after a diagnosis or an accident, but a few weeks later they’re nowhere to be found. Caregivers can face months or years of little to no family support, only to have those same absentee family members reappear when the end is near. Suddenly, everyone has their opinion on the medical decisions you’re making, the care you’re providing, and want to be there every moment. The caregiving routine and rapport you’ve established goes out the window. How can you manage the situation without a battle?

Deborah C. H. W. captured how a lot of caregivers feel:

I too have been the sole caregiver for my husband. [His family] didn’t come and help for the last seven years, so they are not there for him and you, they are there for themselves. They are taking up your space and time with him. If they really loved him and cared about him, where have they been for the past seven years?

Is your home being invaded by controlling relatives? Here’s how other caregivers have coped with the situation and regained control of their lives:

Figure out what you want

Don’t allow their guilt to become your problem. – Gilda S.

You are under stress and need peace around you…If you want their help take it, if not, tell them kindly. This stressful time in your life and especially your partner’s is not about them and they should respect that. I’m sure they are hurting as well but they need to support your decisions. – Cheryl M.J.

Know your rights

[If you’re not legally married] make sure you get something in writing from him and a witness that gives you some right! – Clara D.R.

If your partner agrees, get power of attorney asap. You are the one that should be able to make decisions; you’ve been doing it all along while being his caregiver. – Carolyn Z.M.

Check the laws in your state for significant other. Unfortunately, you may be in for a fight with his family if they have the power to move in on you. Hopefully, you have your names on items you shared as a couple. – Christine D.R.

Do you have yourself covered legally? Durable POA.? Is the house in his name or yours? You should talk to your attorney and make sure your bases are covered so you don’t find yourself suddenly with nothing. Put away your valuables where they cannot be stolen. – Toni E.I.

Figure out what your patient wants

Ask your partner what HE wants, discuss your fears with him and Hospice, then ask Hospice to support whatever decision is best. – Linney E.

You may have to remind them, or have someone else do it, that this isn’t about them. It’s about your partner and making his life comfortable…If they kick up a stink gently remind them that tensions are not going to do your partner any good. – Madonna N.

Figure out what the family wants

Everyone just wants to spend time with their loved one and the OP needs to either set the boundaries clearly or have someone set them on their behalf. This is a tough time for everyone. – Rashida H.

They need to grieve and say goodbye too even if they missed out on time they could have had for whatever reasons. Set your boundaries but remember that many need to say good bye & it might not be in ways that you like or tolerate. People take illness the way they take life and sometimes it’s too little too late and only to make themselves feel better and sometimes it “mends fences” that give a person peace to let go and pass in peace. – Minne B.R.

I suggest you make one person the liaison person so as things develop you tell that one person who then can keep others informed. This takes the stress away from you at repeating yourself over and over again. – Lucy Rea

Have empathy for them, too

Very often family members, when they are not involved with the day to day don’t realize the toll it takes on the primary caregiver and sometimes how downright unreasonable their demands or requests are. – Betty M.

I think your in-laws are just trying to help, they also want to be near their child. You need to try to open your heart to them, see their suffering and their need to help you at this time…Be tactful; no one gets hurt and everyone wins. – Missy B. K.

Since he is private maybe he did not want anyone to know; I can say I know someone like that. It might not be that they did not care, just situations kept them from being there. There is so many scenarios but I feel everyone should think about the situation and respect each other. Everyone loves and shows how they care differently. – CherylAnn N.

Try to embrace this time and accept the help (I have just been there so I know what you feel), try to remember that before there was you, there were his parents, he is their baby, no matter what age and this will be their last months with him also and so they need to have memories and feel the comfort of knowing they shared in his last months here…look at this as a time to let you get some much needed respite and rest and time for yourself to a certain extent….love wins out, love them, embrace them, it will make all the difference. – Dianne B.

Find a compromise

There is most likely some guilt and resentment going on. They feel guilty that they haven’t been there and resentment that you have been (he chose you not them). That being said, maybe you can work it out to benefit all. Talk about caregiver burnout and a way to give him the best possible care is to take care of yourselves too. Work in shifts, so everyone gets equal time and rest/self care. For his sake, smiling faces are best and less stressful for him. 12 on 12 off or 8 hour rotating shifts or 4 on 4 off. – Tonia M. J.

Set boundaries

Thank everyone for the thoughts and concerns, but politely inform them that you husband needs the peace to remain stress free and you or someone else will inform them of any changes. – Jennifer L.S-M.

You don’t have to tolerate this behavior and you have a right to keep your home serene. – Denise A. T.

Post the visiting hours outside the front door and say it’s overwhelming to both of you to have your lives disrupted. – Cheryl W.

Give them time but do set boundaries. – Minnie B.R.

Get support

I am a hospice nurse and it is our job to advocate for the family…I have no problem standing up for my patients, especially in delicate situations. – Chelsea M-M.

I would recommend social worker and pastoral services to help navigate this difficult situations. They can advocate for you both in a non threatening way what is best for your partner. – Kimberly E.

Absolutely talk to social worker or case manager. Have a close friend to be your main point to communicate with outsiders this is what many hospice volunteers do. The families appreciated this as they have a difficult time to say NO. What we want people to understand that close loved ones need their quality time with their loved ones. – Anita B.

My mom went through this with the passing of her boyfriend in her home. HIs family had nothing to do with her before this time. It was hard but at the same time, that was his family. You have to do right by allowing them their time but they need to also respect YOUR time and his. Hospice really helped her…they stepped in without her having to stress and when it was all said and done and his family left…..they stayed to help her out. HER. Not them. I really recommend them. – Leslie A.

Express what you need

They should also be prepared to help physically with things like cooking and cleaning. – Patricia D.M.

Put it in perspective

It can be very hurtful, but keep reminding yourself not to take any of it personally – its not really about you, its other people’s fears that are causing their behaviors. – Linney E.

Getting ready to transition to nursing home care? Here are our top tips

Getting ready to transition to nursing home care? Here are our top tips

Here are suggestions from other caregivers for the elderly who have been there and done that in how you can make your loved one comfortable as they transition to a residential care facility:

 

Know when it’s time

If I was dealing with memory loss I would want my loved one to at least become familiar with their new surroundings before [their health is deteriorated]. I have had senior parents have their daughter put in a residents home in case they died before her. They wanted the staff to hear her stories and the life she once had. – Dani H.

I was there every day for hours but she couldn’t remember, even if I just left. – Jane C. A.

Fostering friendships

Ask about activities provided and try to get her involved. – Betty S. H.

[My mom] was in a facility run by nuns and priests and at least once a day she would go to the chapel for services. – Eluisa I. L.

Staff will speak with residents more often if you let them know how sad she is…as well as inviting patients to activities more frequently. – Diana M.

Celebrating memories

Always make sure they have pictures of their own mom and dad in their sight and fill their room with family pictures and their own things that make them feel comfortable. I also left family albums so she and her private PSW could look through them, when I couldn’t be there. – Jane C. A.

Music!!! Get her an ipod or Walkman with old cds that she loved as a younger girl. Its made a WORLD of difference in my mom. – Cindy L.

Make videos of family gatherings and let her watch it as often as she wants. – Tonia B.

Sing old songs; most likely, she will remember every word. – Cindy L. L.

Arranging visitors

Have a family meeting if you can and schedule your days. Share how the visiting went and share wants and needs of your person. – Debra K.

I have a sign in book in my mom’s room. – John-Roz S.

When I worked in programs I had an email set up called eldersonemail for recreational purposes only. Every Wednesday family had until 8:00pm to send emails on Sunday the recreation staff would print them off seal it in an evenlope with their name and a volunteer would deliver it to them. Writing letters is difficult for many families. I learned this from families feedback. Setting up an email system worked great. – Dani H.

Advocating for excellent care

I helped family members make an album about their parent or spouse with pictures of who was in their life and names. I also had them write their likes and dislikes, key words to use or not use, how they liked to be bathed, etc. It would stay by their bedside table. Senior helpers would pick it up and get to know the person as an individual. – Dani H.

Keep your cool: dealing with demanding patients

Keep your cool: dealing with demanding patients

Not every patient is easy to care for.

How can caregivers keep their cool when dealing with demanding patients?

Here are tips from both family caregivers and professional caregivers on how you can keep your patience when dealing with difficult patients:


A deep breath, a smile, and to know when to just walk away. – Brenda M.

Selective hearing! – Betty S.

Distraction, humor, patience…and lots of love. – Cathy K.

Having a close friend to talk about frustrations helps me. – Jennifer C.

Remember it’s usually their disease and not their real personality. – Bruce R.

I try to picture them as children. Once you’ve made the visual you will find a wealth of compassion and patience. – Jodonna C.L.

I ask them questions about their childhood or whatever and they get talking and forget what they were whining about…sometimes. – Carol A.

I will ask them if they are in pain, not sleeping well, family problems…I probe to find them problem. If a client asks why I’m asking, I explain that their behavior isn’t common and I’m trying to solve their problem. I treat them respectfully, as an adult. Heidi L.

I tell [my daughter] straight up when she goes out of her way at times to pluck my last nerve. We have to tell it like it is with each other. If I couldn’t be honest about the difficulties of our situation it would be harder to continue doing this. She is honest with me as well. – Patricia W.

Giving them something to do with their hands or that they have to pay attention to will get them unstuck from being whiny and difficult. – Cathy K.

Remind yourself that the man upstairs is very patient with us all. – Stacy S.

Sing a song and keep smiling…before too long the shift is over. – Brenda G.

I try to remember that my son has no words and can’t express what’s happening or bothering him. I have a list that I run down just like you do with a baby – clean diaper, hunger, teeth, and now I’ve had to add puberty/hormonal. If everything seems OK, we take him for a walk or a car ride. Sometimes I will get him to sit with me on the floor and yell right along with him. If this doesn’t work, the last resort is getting him to his room and closing the door for a couple of minutes. – Lisa K.G.

Q&A: Palliative Care

Q&A: Palliative Care

Question:

I’m requesting help or ideas. Unfortunately It’s time for my mother (who has Alzheimer’s) to go to a care facility. She is currently at home. She has refused to get into a vehicle for almost a year now. For her safety and others, what should i do?

Answer:

If you are taking care of a loved one at home, you might consider palliative care through a home hospice. Palliative care is specialized medical care for people with serious illnesses. It focuses on providing patients with relief from the symptoms, pain, and stress of a serious illness—whatever the diagnosis. The goal is to improve quality of life for both the patient and the family.

In my experience with home hospice, they provide 3 CNA visits per week, a skilled nurse once a week, an MD visit once a month, and a social worker once a month. They also have respite volunteers to help the caregiver take some time off, various counselors and chaplains, podiatrists, and even hairdressers. They prescribe all the necessary meds, and supplies like ointments, diapers, AP mattresses, wheelchairs, etc. All of it was covered by Medicaid. They will assist you in caring for her at home, a familiar environment, which is much better than being in a facility. However, this is a decision that should be made according to the condition of the patient, and abilities of the caregiver.

Before resorting to palliative care, a regular home health care agency might be a better option. They offer physical, occupational, and speech therapy visits in addition to CNA and skilled nursing. When a patient is past the point where therapy is effective, that agency can refer you to palliative hospice care at home, or in a facility. If you opt for a facility, do very exhaustive research, so that you can find the best one, one that you will have confidence in.

There are many excellent professional caregivers in facilities, and you shouldn’t feel guilty about making that choice. I have been down all these roads, and personally, I considered a facility as a last resort. Not because their caregivers are “bad”, or they don’t give quality care. It’s just that too many of them are under staffed, with one or two CNAs being responsible for 25 patients.

My mom refused to eat, or participate in group physical therapy in the facility, which was an unforeseen consequence. I found myself spending the entire day there, from 8:30 AM to 9:00 PM, every day, accompanying her to therapy sessions, feeding her, and even changing her when she was incontinent. She would only eat for me, and wouldn’t allow anyone else to feed her, so I brought her home, and got home assistance, first from home health care, and then from hospice. That’s working out much better.

Every situation is different. Whatever you do, don’t feel guilty about your choices. Do your homework, get all the information you can, and make a decision that works for your particular situation, knowing that you are acting out of love, putting the patient’s needs first, and doing the best you can.

It’s not an easy situation to be in for anybody, and can be overwhelming, but over time, experience and training will make it less overwhelming, and more manageable. Especially when you have professional assistance, so seek help. There are a lot of good people in the field who will help you, you don’t have to go it alone.

WebMD has additional information on palliative care.

The community member who wrote this helpful post wishes to remain anonymous.

 

How to be a better patient

How to be a better patient

Our site is for caregivers, sure, but I know that the patients our caregivers help visit our site, too. Recently, a husband reached out to me to express concern that his wife, who is his primary caregiver, is burnt out from caring for him. How can he lessen the load?

Here are suggestions from both family caregivers and professional caregivers on you can be a model patient:

Express appreciation

A ‘thank you’ often gives me an extra pair of wings – and it makes my heart smile. – Felicia H.

I currently have my Mom living with me. She tells she loves me 40 times a day, how grateful she is and I am her pretty girl and the special one daily. I have moments of frustration and being overwhelmed, but I cherish her gratitude. – Trice G.G.

A man I care for tells me thank you every single day before I leave…it really warms my heart every time. – Morgan B.

[My dad] told me everyday that he loved me. So even on the hard days when I had no sleep with lots of other things that needed to be done for my kids it was a reminder to serve my dad the best I could. – Laura C.S.

My Mom understands. She went through similar, and then some, when she was caregiver for her Mom. That makes all the difference some days. – Ed R.

Show that you care

Mom always asks me “How are you?” – Ana L.

When my son sits down with me and pulls my head into his lap and pushes the hair out of my eyes. I do that for him when he’s having a difficult day. To have him return the gesture, to have him show that level of affection melts my heart! – Lisa K.G.

Be glad to see them

Whenever I got home after running an errand [my husband] would cry out with a big smile on his face, “There she is!” – Beth T.

My husband tells me he loves my company. – Sally M.

Make them laugh

I don’t think there is one day that goes by that I don’t laugh at something my mother says. She cracks me up on a regular basis! – Rita G.

If she smiles and we can laugh together that’s the best. – Sue R.

My son is non-verbal, so just to see him happy and smiling melts my heart! Sometimes he gets silly and tries to make me laugh ~ so funny!! Makes my day. Knowing he is home with me, feeling loved and cared for brings me the strength I need and makes the sacrifice worth it all. – Jerilyn B.

Share what you know

One of my clients has taught me how to make jam and bake a pie (I’m a city girl)….it was great to get her back into the kitchen she loves, and for us to connect in a new way. That has lead to more trips to fruit stands, which leads to getting out of the car and walking with a cart…good exercise, and a bit of socializing goes a long way to a better night’s sleep. – Kerry N

Trusting me with their private feelings and thoughts means a lot! – Lisa M.G.

Sharing old stories–reminiscing! Elders sharing how they found happiness; what brought joy to their hearts & minds as a child or through life. What pastimes they enjoyed: music, whittling, bird watching, fishing, hunting, riding, traveling, sewing, telling stories–funnies, collections: vehicles, guns, pictures, dishes, spoons, stamps, etc. Vintage people are AWESOME! They’ve succeeded thus far! – Carolyn M.B.

Help with what you can

Mama folds all the laundry in the house. It’s her job and will not let anyone else do it. – Linda L.R.

When I’m not able to, my client cleans up his paper and does a few dishes. His concern touches my heart. – Shirley V.

Be considerate and cooperative

Let me sleep! Which is rare, lol. – Anna L.R.

When he eats all of the meal that I cooked and comments on how good it was. I know that is kind of simple to most but for me, it’s like I won the lottery. – Diane M.

Stay positive

He tries to help in anyway he can and never gets upset with me. His spirit is uplifting and patient..just what I need to calm my nerves on bad days. – Nora F.

He tries very hard to stay strong and positive for me, because he knows positivity it what I use to stay sane. – Christine D.R.

Take care of them, too

My husband sends me to the Spa! – Jan P.

My mom invites her neighbors over to socialize, but I’m pretty sure she does it so I have free time. – Robin B.

What to Do When You’ve Reached Your Breaking Point as a Caregiver

What to Do When You’ve Reached Your Breaking Point as a Caregiver

We’ve been there and we’re here to help.

Here are some suggestions from fellow caregivers

I am at my breaking point right now. And the thing that is helping me…is solitude. I find a few minutes throughout my day that is quiet. No phone, tv, people just peace and quiet. Reflect on the positive reasons you are a caregiver.Kristal S.

Share your feelings with organization, GP or support group that may be able to help you. Use this page as a means of “sounding off.” – Rosie H.

I also find that if I just sit down and make a list of things I am happy about or things I have accomplished…. A vocation whether it is a wife, mother, or caretaker of a sick, injured, or elderly person is infinitely more rewarding and meaningful than the worlds version of a happy life. – Jamie C. 

“Nothing ever lasts for very long.” I have found validation in those words through many situations that have come my way. It does seem to keep things in perspective for me. – Patti G.

I took those moments when mom was asleep, to just go outside and grab some gulps of fresh air, some rays of sunshine or even a little bit of rain, to remind me that I was ALIVE. – Sugarpie Hunnybunch

First PRAY and realize it is at that point that you need a break. I keep Starbucks Frappuccinos in the frig for days like this. I pray sing & enjoy a frappuccino! Find what works for you & do it. No one can love you or take care of you in a moment like this better than you! – Eletha A.

I breathe deeply and believe this too shall pass. And it does. Takes a toll though. – Mary M.

Caregiving is not forever. There is always a light at the end of the tunnel. Just remember you are someone’s angel and think of where they would be without you. Keep up the good fight! – Mark S.

Every situation is so unique. Getting away would be ideal–completely removing yourself from the situation for as long as possible. Possibly admitting that your personal health is at risk and you’ve done all you can humanly do and your loved one needs a more skilled placement. – Dulcie N.

Breathe. It’s just about the only answer when your family wont help. – Diana K.

Find a place that is all yours. A bathroom, a spot in the yard. Fall to yours knees and scream. And while you are down there thank God for how far you have come and ask for the strength to get you through this. And ask someone for help. Hugs and prayers to all who feel this way. My journey is over for the time being. And don’t feel guilty for feeling relieved for it being over. – Tina D. 

A handful of Oreos and milk helps too. – Gail F. 

It’s OK to admit you’re unhappy or sad and maybe even lonely. Say out loud how you feel, maybe not to the person you care for, but just say it when you are alone. Admission is very releasing. If you can’t verbalize what you feel, start a journal. Writing has helped me greatly. – Luci B. 

 Maybe just turning to the person closest to you and seriously letting them know how you feel and that you really don’t know what might happen if something doesn’t change. – Vicki H. 

Create a sacred space in your own home where you can be alone for even 5 minutes. Or ask someone to be with you in person or phone for 5-10 minutes, and simply ask them to listen with 110% attention without responding. – Jay K. 

I love M & M”s so I buy a bag and my favorite magazine and just enjoy myself for a little while. Always helps. I also have literally screamed into a pillow to let out my frustrations (making sure my loved one can’t hear). Sometimes the hardest thing is not to feel guilty if you enjoy yourself. I have to tell myself it is an ok thing. – Dianne M.

Even if you can’t physically get away, try to carve out as many “mini-breaks” as you can during a day. – Jeannette L.

Hospice can help get relief for the caregiver. – Antoinette H.

Step back…regroup…and remember why you do what you do. And the lives you’ve made better and the hearts you’ve touched with your love and compassion. – Debra J.

Make sure you eat healthy. It seems crazy but good food does help. – Jana B.

5 more minutes, then another 5 more, count to 60 and then again, say a prayer, hold your breathe for a minute or so, say another prayer, count to 60 again and then force yourself to get up, go for a walk, garden, meditate, whatever until you reach that stillness inside of you which no person, no event or circumstance can touch, remind yourself of who you are, why you are doing what it is you are doing and then go and do that thing. – Virginia B. 

Meditation. Peace and quiet. Those things have saved my life. Also, some Prozac has been very helpful. My facebook friends have also helped a great deal. I have found that your breaking point will stretch. – Kerry D.

Talk to someone you trust. Have a good hard cry. Cry until you get it all out. – Bobbi C.

Go lay down on the closest piece of grass you find and look at the sky, take a deep breath, cry, and then get up and get at it again… – Rachel S.

My aunt takes me out once a week to an hour comedy show and the laughter is a great release. – Danielle H.

I keep a prayer journal. Quite often I rant. But usually I start writing down all that I am thankful for. – Maribeth C.

It’s hard but worth it in the end. – Garcia

In your own words: 106 crucial tips from fellow caregivers

In your own words: 106 crucial tips from fellow caregivers

Recently, we asked you to share one piece of advice, or one tip, that you’ve learned through caregiving and how you avoid caregiver burnout. You had some amazing words of wisdom to share. Interestingly enough, many of you learned some very similar lessons — here’s what we found and what you said:

Breathe for Patience

1. “Patience. Much patience. And laughter is a close second!” – Tammy Lewis

2. “Breathe patience and understanding” – Karen Sulski

3. “Deep breaths and plenty of patience” – Cari Bergery

4. “Breathe… Take a moment in the midst of the chaos and just breathe…” – Annette Weber Andrews

5. “Be patient and love your patient as you love yourself.” – Cherel Verana Bustamante

6. “Always take a moment and breathe.” – Cheryl Montague

7. “Patience, understanding and heaps and heaps of love.” – Rhondda Rosenow

8. “Be patient and pray for strength.” – Denise Davis

9. “Hold on! The good outweighs the bad!” – Helen Tisdale

10. “We all lose patience at times, forgive yourself. Show your love, a kiss on the cheek, holding hands, and that precious smile they give back even though they don’t know us anymore means so much.” – Donna Bills

Make This a Non-Negotiable Top Priority

11. “Schedule self-care as a non-negotiable top priority.” – Michelle Poppleton Chumsae

12. “Take care of the one in the mirror.” – Paula StpierreChalker

13. “Take time to rest. You can’t help others if you don’t realize your limits.” – Bobby Arnott

14. “ALWAYS make time for yourself. It’s not selfish of you to do so. Separate yourself from the situation and do something for YOU and YOU ONLY. That was one of my biggest challenges in the beginning of my husband’s TBI. I would feel guilt leaving his side, but you have to train yourself to think otherwise. It keeps you sane in the insane moments when you’re able to walk away for a second.” – Kristina Zamora

15. “Take some time for yourself everyday.” – Amie Lynn Green

16. “Take care of yourself so you can take care of others.” – Diane Croy

17. “Please take time to take care of yourself, this is so important physically and mentally.” – Wyoma English

18. “Make time for yourself every day. Even if it’s just a short walk, shower, or eating lunch outside. Taking a little ME time is important to recharge your batteries so you can continue caring for the person you are caring for.” – Heather McBeth

19. “Take time for yourself. It is so important. I exercise and the strength it gives me to lift my dads wheelchair and other things. But it also helps my depression and anxiety.” – Jill Reincke

20. “Put self-care first or you will end up a martyr needing self care and those who didn’t show up to support you in caring for another won’t be there to care for you.” – Pat McDaniel

21. “Make time for yourself even if its five minutes here or there. If you don’t take care of yourself how can you take care of someone else? I know I had a breakdown in the midst of taking care of my mom and bro and turned into the one needing care for a couple of days.” – Annie Newman Crawley

22. “Maintain your own health…” – Darlene Tabangcura

23. “Be kind to yourself. If you don’t care for yourself, you’ll have nothing to give…” – Susan Grace

24. “Look after yourself first, even if it means screaming loudly for help!” – Jaci Wiley

25. “Take time for yourself. Do a hobby that you love, pamper yourself, visit with friends and loved ones, and see the doctor if you need to.” – Jessica Hope

26. “My heart, mind and soul was on my husband, praying with him, caring for him and being advocate. But I knew in order for me to be well I had eat well, sleep well and find a mentor for me.” – Jacki Smallwood

27. “Remember to bend those knees when lifting. Know your limit when lifting. I wish I had listened I thought I would be 23 for ever and I would never loose my strength but I’m 49 now and have had many surgeries for injuries caused by not being careful & knowing when to ask for help. So do yourself a favor and know your limits.” – Sylvie Perez

28. “When given time off, don’t overtire yourself.” – Kathelene Almanza

29. “Take care of you it will get you through…” – Donna Kukura

30. “Making time for yourself is a MUST otherwise you will lose yourself. Recognizing that there will be some good and bad days and being ok with that and remembering your only one person. Put yourself at the top of the list. If you don’t take care if yourself, you won’t be any good to anyone else…” – Renee Ferguson

31. “Make time for yourself… Like the stewardess says ‘put the oxygen on yourself first’ so you can help others. I was physically sick many times being so exhausted and did not know where to turn…” – Cindy A. Hardison Rodriguez

32. “Make sure you take a few minutes for you, the caregiver is as important as the person being cared for.” – Lisa Fletcher Richer

Live in the Moment

33. “Never get angry. Live each day as the last. Laugh. Smile. Cry.” – Kayla Huebner

34. “It’s not ONE day at a time, start with breakfast and work your way toward lunch… just a little at a time.” – Stacey Gordon

35. “Cherish those special little moments.” – Karen and Pavel Blaho

36. “Let things go for the day, when you go to bed. It helps start the next day a bit easier.” – Leota Endicott

37. “Life is like raindrops, you don’t know which one is going to get you wet—Stay warm and comforted, the sun will come again.” – Judy Ann Kent

38. “It’s all about the moments, cherish the good, distract the bad… Love through all.” – Patty McCoog McMahon

39. “Take one moment at a time, moods shift quickly with the ill person. Very difficult for only one caregiver to deal with.” – Pam Roche

40. “Take it one day at a time and breathe!” – Beverly Axel Smith

41. “Remember nothing last forever and take one day at a time.” – Concepcion Ocegueda- Thompson

Keep It Practical

42. “Mouth breathing while diaper changing.” – Jennifer Oertwig

43. “Humor goes a long way. So does kindness and love.” – Tammy Martin

44. “Patience and a sense of humor… Loving heart…” – Lora Lee Ziegler

45. “Pray a lot and think positively!” – Patricia McHugh Santmyer

46. “Sleep when you can.” – Tori Webb Woods

47. “Be kind.” – Susan Wiffill

48. “Get an elder care attorney involved soon. Alzheimer’s is a devastating and costly disease.” – Christy Dave Hirschman

49. “Get a good social worker in your family’s corner.” – Rosanna Maher

50. “Don’t be too proud to accept help when needed.” – Marjorie Deuell Fox

51. “Let people help you. It is a gift to them to be able to do something and it will help both of you. Don’t be a hero or a martyr. Prioritize and delegate when people ask what they can do.” – Jane A. Tilleman

52. “Ask for help when needed. My hubby, and my dad require 24 hour nursing care… They forget how big a load I got to carry not including my own.” – Celina Markishtum

53. “Make as many connections as possible that can help the person you are caring for along the way, whether it be financially, medical or social. There are many resources available—just ask.” – Mary Frances Kovack Studzinski

54. “Listen to specialists. There are wonderful services in the public, charity AND private sector who can help. None of them work with each other so you need to prepare your own special network of all three.” – Lucy Woodhouse Haughey

Vent, Connect and Let It Go

55. “It’s ok to vent. Let it out then let it go.” – Trish Ashby

56. “Find the real people who have really walked your path… My closest friends are people I met on the internet with kids about the same age and diagnoses. We have a closed group on Facebook where we can say anything. And we have also made a point to meet in real life. I would have gone insane without these people. Truly.” – Amber Stilwell Fergason

57. “Don’t feel guilty for feeling angry. It’s natural. Deal with it as constructively as you can.” – Ali Costine

58. “Do not allow yourself to become isolated!” – Leslie Ann Shields

59. “Create relationships with those who share similar struggles.” – Kara Davioni

60. “Never have any expectations that family will help and support. I did and it was a costly mistake in the early years. And try not to get too isolated as I did, it’s devastating.” – Megan Northcott

61. “Let go of the need for control.” – Liz Gary Maurice

62. “Let go, let go and let go!” – Diane Godlesky 63. “Try to let go of the mistakes.” – Cindy Morris

Remember Your Loved One

64. “They mimic your emotions always smile stay calm and love wholeheartedly.” – Cassandra Friend

65. “Remember we (survivors) don’t like being dependent either. Sometimes we may say thing we don’t mean. There is a lot of frustration on our part because we can’t do things we used to do.” – Rick Ernest

66. “When dealing with dementia, a hard lesson I have had to learn is not to correct my mom. Who cares if she says it’s Tuesday when it is Saturday? The most important thing for me is to stay healthy-my gym time keeps me strong inside and out and better able to handle all challenges.” – Melanie Malone Weaver

67. “My disabled adult son always says to me ‘I would do the same for you, Mom’ and I know he would if he could. Keeps things in perspective for me.” – Malia Lovell

68. “Instead of trying to bring your loved one to your side of the river, go to theirs. Try and truly understand what standing in their shoes is like. Join THEIR journey.” – Diane Marie Jurgensen

69. “Never forget the person they used to be. They have not CHOSEN to be dependent. Remember them at their best.” – Beth Bodette Rymer

70. “Don’t take their aggression personally. They may not know they are being aggressive towards you, it could be a part their disease ‘talking’ or they could be just having a bad day. Walk away when and if you need too so things can calm down and remember to breathe. It’s ok to ask for help also.” – Maria Medina

71. “Remember they are doing the best they can even though it doesn’t appear that way sometimes.” – Christy Dave Hirschman

72. “They may not remember what you said but will remember how you made them feel.” – Amanda Konrad

73. “Treat them how you want to be treated.” – Celeste Morrison

74. “Do unto others…” – Adrienne Gruberg

75. “Try to see them as they were and deal with them as they are, you will be angry, frustrated, hurt and overwhelmed but when the end comes you will know you did all you could do and feel no remorse, only sadness for the loss.” – Suzie Horak Marcin 76. “Try to remember that your loved one would love to not have to be cared for.” – Joyce McMahon

77. “Remember the love you share… Let it be your guiding light.” – Judith Bateson

78. “Touch, for a patient, can be so healing. Rub their forehead, ask if they want their hair combed, or hold their hand. Knowing someone truly cares is so very important for their peace of mind.” – Sheila-Lynne Beal Wurzer

79. “Leave no kind words unsaid. Remember the Golden Rule. You might be the caregiver today and someone else may be your caregiver tomorrow. Be the one you would want for yourself. It won’t always be easy, but it will always be worth it. Give yourselves the much-needed breaks and take some guilt and duty free trips, when you can. When it feels like the weight of the world is on your shoulders, shrug it off and let love fill your heart, because your sacrifice, your care and your service has made a difference.” – Karen and Pavel Blaho

80. “The person you are taking care of appreciates everything you are doing more than you will ever know.” – Belinda Hall

81. “Treat those you love and care for the way they treated you your whole life. With love and respect.” – Tracy Johnson Pegram

82. “Try to be kind at all times. They need us to help them. Not everyone can do what we do. Hang in there. It’s just a season.” – Deb Krause

83. “ALWAYS have compassion!” – Amber Gryder

Speak Up and Stand Your Ground

84. “Take help when it’s offered. If no one offers, ask.” – Devin Ball

85. “Be firm with your decisions. I take a lot of questions and nitpicking from my husband’s family. At first it gave me such bad anxiety and I was so unsure of myself. I had to learn to stand my ground.” – Ambre Irby

86. “Don’t be afraid to ask others for help!” – Sue Bastien

87. “If you have to, LEARN to ask for help from others.” – Adrienne Gruberg

88. “Don’t be stubborn and try to do it all, when someone offers help accept it if possible and ask when you need it. Burn out is no joke…” – Mandy Ladd-Lueshen

89. “Choose your battles wisely. Only fight the ones that will make a difference in the end!” – Lisa Ward Arnold

90. “Pick your battles. Only fight the ones you can win.”

Keep It in Perspective

91. “Understand and come to terms with your limitations as a caregiver, and don’t be too hard on yourself because you’re not able to fix everything.” – Adrienne Campbell

92. “You ARE good enough! Don’t ever doubt that you are doing enough. Sometimes you’re taken for granted, sometimes you are the one to take the anger and the hurt… Remember it is because you are the one they love and trust the most.” – Vicky Klass Cramer

93. “Be as kind and forgiving of yourself as you are of your caree.” – Leanne Irwin

94. “Remember that you are only human so don’t be too hard on yourself.” – Norma Cole

95. “The days are long but the years are short!” – Anne Webster

96. “Recognize that you are doing your best, day in and day out. Some days will be better, some not – but always give yourself the credit you deserve. This is a labor of love and a difficult job all rolled into one.” – Susan Keller Suresh

97. “Take breaths: No, nothing is normal and nothing goes as planned—it is okay to cry every so often.” – Tabatha Dean

98. “Don’t forget that you are the most important part of the process.” – Bruce Solomon

99. “One day at a time. If it doesn’t get done today, life will go on.” – Mary Frances Kovack Studzinski

100. “Just keep everything simple!” – Cathy Martinez-Blackwell

101. “Remember that you are human! What you have to give say or do is precious.” – Lorinda Hilliard

102. “Remember that it could be you or your loved one be a positive light!” – Sharon DaGreat Elicke

103. “You can help with love but remember you can’t fix everything and it important to make time for yourself and don’t blame yourself… We are not perfect people no matter how hard we try to be!” – Alan Thym

104. “Be patient and think, this could be me!” – Kristinna Stephens

105. “Don’t take words said or things done to you personally… It is so hard to do sometimes… Today has been one of those days with my mother…” – Gail Williams

106. “Imagine you were in their shoes!” – Scott Troxell

Your Turn

We want to know: did you agree with the advice? What stood out for you? What advice would you offer a new caregiver? Let us know in the comments below!