How to ask for the help you need

How to ask for the help you need

So many caregivers find their requests for help fall on deaf ears. So many people say they’re willing to help, but then they never seem to be around when you need them. Why does this happen?

Friends and family

It can be uncomfortable to do, but letting people know you could really use their help is important. Ask a neighbor if they could pick a few things up for you while they’re out. Let your community organizations know you could use a volunteer for a few hours to clear up your yard or keep your mom company. See if your friend would come cook dinner and eat with your family once a week. The more specific you are, the better your chances.

It can be a real challenge to break up tasks into pieces that strangers can help you with, so start small. Hopefully soon certain asks will be taken off your plate without you having to do anything about it — the neighbor who mows your lawn when he does his and the friend who’ll take your dad to the doctor every week.

People will say no and let you down, but people will also help.

Many people want to help, they just don’t know what you need. It’s like that friend you keep meaning to see, but never make real plans with — get specific and it’ll actually happen. People feel good about helping. Think of all the times people have helped you in the past — they’ll be there for you again.

Insincere offers

Sometimes people offer to help just like they ask you how you’re doing today or comment on the weather — it’s just a reflex. They’ll be surprised to hear from you if you call them up and ask them to follow through.

Genuine offers

Other people really mean it when they say they’d like to help, but they don’t know what to do. Often times they’ll come through if you ask them to do a specific task.

It can be frustrating to ask people for help multiple times and have them turn you down. Everyone’s busy, not just caregivers, but there are ways around feeling like coordinating help is more effort than it’s worth.

Apps like Tyze and Caring Bridge help you by saying what you need and when you need it and allowing people to step in when they’re available. When people offer to help, add them to your network of supporters on the app. Make a list of the things you need help with. Ask them in person or over the phone, too.

Professionals

Medical professionals often have to put their guard up against getting too involved with patients, so they may cut you off or seem cold when you tell them how much you struggle. They may also not take the time to figure out what, exactly, it is you’re asking for.

If you ask direct questions — can I get help with this bill? can I get medication delivered? is there home care help available? — you may have better luck.

Ask yourself this

Do you want help or someone to listen?

If you’re frustrated with someone’s attempts at giving you advice, ask yourself what you’re looking for from the conversation. Do you want advice? Offers of actual help? Or do you just want someone to listen and encourage? Let them know what you want.

Do you want an expert or someone who’s been through it?

There’s a time when you want specific advice and a time when you’d like to commiserate and hear about someone else’s experiences. Remember that an expert may have never actually had to apply his or her advice. Each person’s experiences are unique, so what helped one person may not help you.

What am I asking for?

How much of the background information does someone need to know to understand how they can help you? So many times in life a brief question is more likely to get attention than a long story.

Who to ask

Your doctor likely has no idea how much things cost or what programs are available to help. Doctors also rarely have the time to listen. What you can do is ask your doctor or nurse to refer you to a social worker.

A social worker can:

  • provide counseling for you and your family
  • connect you to support groups and other families
  • help you find financial support
  • help you communicate with the medical team

Many people struggle when a family member is seriously ill or disabled. Social workers can help you cope with the financial, emotional, and practical problems you’re facing.

Breaking a promise

Breaking a promise

So many of us have promised our parents that we’d never put them in a home.

And then, one day, we do.

Putting a loved one in residential care is an incredibly difficult decision for anyone. It’s even harder when doing so breaks a promise we’ve made.

Here’s what our community has to say about it.


I do care for my invalid Mother at home, but promises or not, there are instances where one can no longer care for a parent; so choose a nursing home carefully, visit very often. – Phyllis M.

What if you get sick? Or disabled? Of course you provide better care than other people would but it is important to make plans for what to do in case of emergency. Caregivers develop illnesses and have accidents just like non-cargivers. – Jeananne E.

I tried as hard as I could not to put my dad into a nursing home. I had to in the end for the last months of his life because I couldn’t lift him anymore. He died not forgiving me for doing that. No one else helped me care for him all those years. Now I care for my mum and I am doing a great job. However she knows that I will only put her in a home when I can no longer care for her re my health or my inability to lift her etc. I will sleep well when she goes to God because I know I have done all I could for her and dad. Those who do nothing are the first to throw stone. They are the ones who live their lives only unto themselves. – Diann P.

My moms care is taking its toll on me, physically, emotionally, spiritually. It’s difficult to say the least. – GG W.

When you keep anyone you are caring for in your home it engulfs you. I have had the greatest caretakers in for Mom. We are truly blessed for that. It’s my time now to live. I have a world to conquer before my last breathe is taken. Address the problems and run it like a business but remember you can only run hard for a few years. Then it’s time to make this decision. Best of luck! – Diane B.

Many families have no choice. We should not shame people who are at the end of their ability to caregive. And sometimes when people get to this point the care at home is awful. I have seen this many times. I understand care in nursing homes and assisted living facilities may not be good but sometimes there is just “The end” to the ability to caregive especially if the care recipient is violent or doesn’t sleep. – Jeananne E.

Social isolation

I think keeping a loved one at home after decades of illness is not good for the loved one or caregivers. It sets everyone up for injury, undue chronic stress and most caregivers are physically incapable of the job. The whole family should matter not just the sick person.

Keeping the individual at home sets everyone up for extreme social isolation cutting them off from services and finding friends. Nothing like group depression to compound issues. If you realize the family member has deteriorated beyond the point you can safely care for them, bite the bullet.

That said, I believe most families are deterred by what they see as high costs and that once the family member runs out of money, he’ll be evicted and back at home. – Angela M.

Your safety

I promised that for both of my parents.

But I did have to put my dad into a nursing home after years of caring for him at home because he was becoming too violent.

It’s a horrible feeling when you have to physically restrain your father because he is trying to kill you. I dealt with his verbal and emotional abuse for years but on two occasions he tried to end my life due to the demented state he was in.

I still care for my mom in my home. – Lorne S.

My MIL will cuss you, hit you, and throw things at you! She would stab us if we didn’t hide all the knives. – Vickie B.

Your health

Sometimes we must make decisions that are difficult due to our own health or situation. Do the very best that you can with love. I do care for my mother at home, but understand if one cannot. Only one who has been there can understand. – Phyllis M.

I used to visit the “Old Folks Home” on my way home from elementary school. I promised my Mom she would never have to go there. It was like the dog pound. I quit working and took care of her, by myself, until she passed at age 94. Her dementia took a toll on me that will last all my life. – Cherie H.

I know I can’t change a diaper of a 230 lb woman for the next 10 years while working and raising my daughter. – Jennifer G.

It’s not abandonment

“Abandoning” is the key word here.

When your parent(s) go to live at assisted-living or nursing home, visit/call them often. Then, you aren’t abandoning them. – Kristi W.

My mom is in assisted living 3 miles away. She has her own room. I take her to all of her doctor and dentist appointments plus we have her over every week for a break from her home, to go to church with us, and have a family meal. I also buy all her clothing and personal needs items plus clip her fingernails and bring her to get haircut. She won’t let the aids cut her fingernails. She wants me to do it. She is able to live out her life there even in hospice. Since she is so close we will be able to be there all the time anyway should that time come. – Jeannine G.

You can not risk your health way of living or sanity to take care of a parent. If they were in their right frame of mind they wouldn’t want you to. Take care of yourself and visit often. Take them out on outings if their health allows. – Renea L.

Little gifts to brighten a caregiver’s day

Little gifts to brighten a caregiver’s day

Caregivers can be tough to shop for! When you’re busy taking care of everyone else, there’s hardly any time left for hobbies.

The best way to brighten a caregiver’s day is always going to be taking something off of our to-do list for us. Having an afternoon off from running errands or a little time to ourselves is always appreciated.

It’s hard to wrap “stopping by the pharmacy” or “an afternoon with grandma,” so here are a few ideas you can hand over…

For when you’re not there to say it in person…

For someone who needs a boost…

For someone you really care about…

For the caregiver who doesn’t ask for help…

For when you wish you were there to help in-person…

For the impeccably organized caregiver…

For the caregiver who doesn’t have the time for a break…

For someone who doesn’t want to hear they should take care of themselves…

This is what caregivers want in 2017

This is what caregivers want in 2017

The lives of caregivers rarely rely on the calendar, they go on the schedule of the person we’re caring for!

Still, the beginning of a new year is a time for reflection. Here’s what our community is planning on doing this year…and what we’re hoping others will do to help us.

What are we hoping to do in 2017?

Find one week to do what I want to do when I want to do it

Take my caree out to more fun places

Help my caree to be stronger and more independent

Continue to just be…and be thankful for each day

Have more patience

Find time to be creative and make my art

Laugh more

Create and maintain healthy boundaries

Make peace with my caree’s illness

Be more active now that I am no longer a caregiver

What do we hope for all caregivers in 2017?

Lower insurance copays and lower medication costs

Better hospital discharge planning

Refundable tax credits for caregivers, like child care credits

Support from Medicaid and Medicare for in-home care

Family caregiver training

Regular respite resources covered by insurance

Social Security contributions for time spent as a caregiver

Additional in-home care aid hours covered by insurance

More volunteer respite resources

Tax deductions for mileage to and from medical appointments

Meals delivered for disabled and ill carees who are not elderly

Assistance with household cleaning and maintenance

Healthy holiday treats

Healthy holiday treats

The holidays are a time for indulgence, but not all of us are at liberty to indulge.

Don’t skip the holiday fun! Try one of these healthier options to celebrate the holidays.

Snowman porridge

Porridge plus blueberries, chocolate chips, and strawberries. Or whatever you have at hand. Get creative!

chia pudding and kiwi christmas breakfast

Chia pudding with kiwi

Chia pudding is easy to make ahead of time. You can make it with regular milk or any sort of non-dairy milk, like soy, almond, or hemp. Add some kiwi puree and slices to add some Christmas flair.

crackers with avocado, tomato, and basil

Avocado and tomato bites

Smash some avocado, smoosh it on a cracker, and top it with a cherry tomato slice and herbs. These hors d’ors are super simple and delicious!

sourdough bread with avocado and veggies

Christmas toasts

Toast whatever bread you like, smash some avocado on top, and toss it with whatever tasty bites seem festive to you.

You can also try this fun edible menorah project for Hanukah.

baked apples for hanukah

Baked apples

Regular baked apples are pretty unhealthy, but this variation is a little more nice and a little less vice.

Can caregiving lead to PTSD?

Can caregiving lead to PTSD?

Most people associate PTSD with veterans of war, but you don’t have to be a soldier to experience this condition.

The NIMH defines PTSD as ‘a disorder that develops in some people who have experienced a shocking, scary, or dangerous event.’ When people experience a traumatic event, it’s common to be impacted by it with a range of emotions. People with PTSD don’t recover from this initial trauma. It doesn’t have to be triggered by a ‘dangerous’ event; many people experience PTSD after the death of a loved one or another emotionally challenging experience.

Risk factors for PTSD will sound familiar to family caregivers. They include:

  • Living through dangerous events and traumas
  • Seeing another person hurt, or seeing a dead body
  • Feeling horror, helplessness, or extreme fear
  • Having little or no social support after the event
  • Dealing with extra stress after the event, such as loss of a loved one, pain and injury, or loss of a job or home

You can learn about the symptoms and diagnosis of PTSD on the NIMH website.

If you think you may have PTSD, talk to your family doctor. If you aren’t comfortable seeking treatment, there are still some first steps you can take. Reducing stress through exercise and seeking out comforting situations can help you feel more secure. Get support from your friends and family, especially by letting them know what situations trigger your symptoms. Try to be realistic about what you can do each day, break up projects into small tasks, and accept that you can’t do everything. PTSD doesn’t go away overnight, but it can get better.

Here’s what some of our veteran caregivers have to say about PTSD:

After caring for my husband, for 20 years, I am afraid to answer my phone, open mail, or attend doctor appointments, fearing more bad news. I just want to hide. – Lynn R.

If you sleep with one ear open, you startle easily. Loss of sleep triggered by this startle reflex, will lead to ptsd. People who fail to understand my situation don’t believe me, but thankfully medical professionals do. – Angela M.

After 27 years caring for my very vulnerable son, I can tell you that it is indeed PTSD. For a mother, the fear of something happening to your child is much worse than anything that could happen to yourself. I have an anxiety disorder and have suffered from depression. You live in terror every time you hire a new respite worker, and only trust yourself as a caregiver. Your decisions carry so much weight that some days you feel they will crush you. – Dawn D.

Being part of caring for my MIL definitely has caused PTSD. Its a complete nightmare, and now I am scared of her! She talks about cutting people and watching them bleed! I know its the dementia, but she scares the hell out of me! I have nightmares about all of it! – Vickie B.

Anecdotally, caregivers who take care of a family member who is or has been abusive are more likely to talk about suffering from caregiver PTSD.

I’m the only child in my 50’s. My parents are near 90, refuse all outside care, cashed in their life insurance policy with not enough for burial. Now there is over 12k in medical bills and they won’t call a lawyer or approve forms for Medicaid. They say no one is putting them in a home. Mom has fallen numerous times and in nursing care and Dad signs her out. To stay out of care she shifts blame onto anyone including, and most of all, me. Agencies won’t help. Doctors quit the case. AOA said it’s one of the most difficult cases they have encountered. – Jacqueline A.

I wish my mom would understand that no one wants to help her because she is a mean old spiteful monster who has alienated EVERY one in the family to the point that they don’t even want to call to talk to her anymore. But she blames me for it! – David R.

I used to think that I would ignore my stepfather who abused me, but when it came down to it…I had to treat him better than me. – Jennifer K.

I can relate to caregiver PTSD from taking care of my mother that never took care of me & Granny that raised me! – Chrissy G.

What should you do if you feel you have caregiver PTSD?

The reason you have PTSD is because you love and you care. The key to reducing anxiety is to get out of your own head. Watch your self talk. Be kind to your mind, it does not know the difference between perceived danger and real danger….live in the moment! – Dawn D.

If you are feeling overwhelmed, you may, very well, benefit from talking with a therapist or counselor. I have learned to take time, for myself, once in a while, to spend a few hours, with friends, or even just go for a ride. I feel guilty, for even smiling, sometimes, but we have to take care of ourselves, and find ways to keep our spirits uplifted, while we care for others. For what it’s worth, I would advise you to, whenever you can, do something special, for yourself, even if it is a meal out, a movie, or just something you like. Try to interact, in a positive way, with others, and rejoin the human race. You are entitled to happiness, and, your [loved one] may even want that for you, as well. – Lynn R.

Some comments have been edited slightly for clarity and grammar.

Caregivers get real about what it’s like

Caregivers get real about what it’s like

We talk a lot about how rewarding and meaningful caregiving can be. Most of us would never trade our responsibilities, but that doesn’t mean caregiving isn’t the most difficult thing we’ve ever done.

Instead of trying to sugarcoat it, how about offering caregivers some real support?

I cared for my mom for 10.5 years after her stroke. She moved in with me when I was 29 and moved to an assisted living when I was 40. Now she is about to transition to a Nursing Home. So scary, because as many of you know, out country SUCKS at taking care of its citizens, but especially the elderly.

What many didn’t realize is that, although she hasn’t lived with me for two years, I still have to deal with the pads, the briefs, the meetings, the unanswered call lights, the endless phone calls (sometimes 50+ a day) because she is lonely.

It’s exhausting. It’s guilt ridden. It’s unforgiving. – Greta M.

You are so right, some days you feel like you cant even BREATHE! My dear mother in law has had Alzheimer’s over 17years already! My mother has had dementia over 3 years and we take care of her at home 24/7! The stress level among the siblings is through the roof! God Bless all caretakers its the hardest job in the world and unless you have lived it you have no clue. – Tammy B.

Everyone thought I would get a break when my Granny had to be admitted into the nursing home when she broke her shoulder. They called me numerous times daily and would ask when I would be there to sit with her because with her Alzheimer’s she was a handful for them. It was just as exhausting and I hated that she was there. – Chris M.

Caregiving has been my life for 4 years now…it is the worst. I lost my retirement, I’m losing my home, and frankly people are sick of hearing of my son and his illnesses. The worst question of all “when will he get better?” again, no, he won’t ever get better. – Paula P.

My husband has been battling head, neck, and lung cancer for 5 years. He gets his health care through the VA because his cancer was caused by Agent Orange. While we have no financial issues, the stress gets overwhelming just the same. His 3 kids have never offered to go to a doctors appointment with him, or stay with him to give me a break. Sometimes I just want to yell at someone. – Brenda I.

It’s all about attitude. You can either sit around woo-is-me-ing or you can find joy in little things and not be as miserable. I’ve been caring for my father with dementia for 7 years now. I’m 36, not married, living with my parents to do this, have no clue how I’ll survive or even work after all is said is done and children are now out of the question. Sometimes I succumb to the misery and have a good cry. But the next day, I list what I’m thankful for, even if it’s just coffee, my cats, or the weather; try to put everything back into God’s hands; and smile when dad says “good morning” or “I love you” back to me or my mom. – Susan F.

It’s all about how you spin the situation. I’ve been taking care of my husband for 1.5 years as we battle throat cancer. I’m no iron maiden, or super woman. I spend my days exhausted and often in tears. Caregiving does suck, but you’d best suck it up and get a handle your misplaced frustration. – Fiona S.

I took care of my mother for 20 years until she passed. While I was able to work, that was my only outside activity. It messed up my young adulthood and my adult life. I had no vacations during that time. My sibling hardly ever stepped up and helped out cause he lived a couple of hours from me. Like many caregivers I have diabetes and heart disease. It takes a large toll over time. Would I do it again…No, not in the manner I did it. I now have no children to help me out in my old age. I now advice people, take care of yourself FIRST. Seek balance and don’t make that sever of sacrifices! – Karen T.

I’ve been caring for both of my parents for over 21+ yrs. I’m tired of this. When My Dad Asked Me 21 YEARS ago to stop working to take care of them, I never thought it would be this hard. My mom is stage 3 Alzheimers and can’t walk due to her stroke and my father had leukemia.

I hate it when people ask if I need help to just give them a call only to come up with an excuse.

I even become angry when these so called caregiver experts giving advice when they themselves aren’t experience caregivers. Many of these so called experts always have the same excuse when I challenge their credentials as to call this number or person about their caregiver experience. Yet I’m grateful to the very few who contacted me saying that they have experience in taking care of a family member. – Bob H.

It’s not an easy road to travel. There are organizations that raise money for research, but none for caregiver assistance. There are many that offer help, but it comes with a hefty price tag. After several years of suffering from ALZ, my sweet Mother left this earth on Aug. 12. I was her caregiver during these years. I watched my Mom totally disappear and at the end, her family was with her as she drew her last breath. – Pamela M.

I’m my moms caregiver and its draining, my life isn’t what I had expected… but to not have her here with me and our family that would be more devastating. – Harper R.

Talking about how hard caregiving can be is not meant to make you feel bad. It’s just a hard place for caregivers. It doesn’t change that we love the people we support and want to be sure they’re ok! – Karen B.

It’s so hard because you feel guilt for wanting time alone but I’ve been doing this caregiving now for almost a year by myself after my father was killed, my mom had a stroke and is in a wheel chair and has no left leg control…she’s a total dependent. I am an only child, 35 and I am already burnt out.I have some help in the mornings so I can work, but all nights and weekends are on me and I am exhausted! – Lisa R.

Caregiving IS rewarding. And it can suck. At the same time. I’ve been caregiving to a family member for 18 years and helping a team of carers do the same and it can be inspiring and uplifting. The ingenuity and love and generosity of spirit of other caregivers inspires you. And the strength of spirit of the person being cared for, if you are lucky enough for that to be intact. But, yes, it is exhausting and at times you’re on your knees thinking “What can we do next that might be of use as so far I’ve done everything and I don’t think I’m helping.” All you can do is be there or make sure others are when you can’t be who are loving and generous of heart and… that’s about it, I guess. – Phil D.

It sucks. It’s draining. It’s tiring. It’s hard. It’s painful. It’s lonely. It takes someone special to do it. It’s what we do. We never stop. – Jeannine G.

It really does suck. It sucks your energy and your attitude. Some days, it sucks your sense of humor right out of you. But we keep on, caring for that loved one as best we can, given the rotten circumstances. – Gretchen M.

We have long term health care insurance that we can access for assistance, but here’s the thing. How to convince my sick husband we need a stranger in the house to help us out? Exactly when will he think it’s “time” to call them in? I work full time and teach at a law school one class a week. And get the house cleaned, dogs fed and groomed, lawn mowed and other landscaping done, etc. yet if I want any time to myself – a conference out of town – even a late dinner with a girlfriend – I get the passive aggressive guilt treatment. I have cancelled out of and left early from more obligations I’d like to think about. He refuses to see an end of life therapist and some of his family is somewhere on a barge on the River Denial. His illness is terminal, there is no more treatment available and things are just going to get worse. So I’m not feeling the “rewarding” part at all and I don’t think your attitude needs any sort of adjustment. Keep enough of you going so you can live and enjoy life after they are gone. – Melissa M.

This damn job is no fun, but yes, there are some funny moments. It’s also heartbreaking, nerve racking, anxiety filled, scary, worrisome, difficult…I could go on all night. No, it’s not rewarding, but my parents deserve the best I can give them and so much more. – Frank A.

Its a miserable existence! Pee and crap everywhere, wandering, literally being beat up, scratched and bit, just for trying to clean her up! My MIL hallucinates and talks crazy all the time. Disassembles every object in the house, and cannot be left alone for 5 minutes! – Vickie B.

I didn’t think it was gonna be this overwhelming and such a big life changer, but I’ll do anything for my 90 yr old Grandma. My reward is God letting me spend our days together. – Adriana E.

You lose your loved one, you lose yourself, you lose your family and friends. And you are unable to help your children and grandchildren. – Elsebeth P.

Some comments have been edited for clarity or grammar.

Taking a personal inventory

Taking a personal inventory

As caregivers, we so often forget about ourselves. Sometimes it’s helpful to take a few minutes to take a personal inventory.

Reflecting on today

How did the day go?

What challenges did I endure?

What success did I experience?

What did I do for myself today?

What did I enjoy about today?

What did I learn today?

What did I learn about myself?

What did I learn about others?

What do I play to do — differently or the same — tomorrow?

Who have I spoken to lately?

Who have I seen lately?

Long-term vision

What do I want my life to be like in 5 years/10 years?

If I were to break that vision down into goals, my goals would be:

What can I do today to help myself achieve these goals?

Where can I get help achieving this?

How do I measure success?

Things NOT to say to a caregiver

Things NOT to say to a caregiver

Someone you know has recently taken on caregiving responsibilities. You want to show your support, but you aren’t sure what to say? Here are some tips on what not to say and suggestions on how to be supportive.

I hear a lot of these comments from people who probably should know better; I attribute it to them wanting to help, but not having the correct vocabulary, similar to when someone passes away. They want to commiserate, show empathy and affection, but don’t understand what to say or do. It’s okay. I’m far from perfect, too, and have said dumber things in my life. We live and learn and do the best we can. – Dean P.

What not to say

“The worst things I heard while care giving were, ‘Everything happens for a reason and God doesn’t give us more than we can handle’…also, ‘It won’t last forever’, no, it won’t but, that means my mom will have died and that’s not really a comfort.” – Odilia S.

I hate it when people say “I don’t know how you do it.” I suppose that’s meant to be some kind of compliment, but what I hear is “I sure wouldn’t want to deal with what you have to.” – DeDee M.

Don’t tell a caregiver with a sibling that will not lift a finger to help, visit or call his mother that the sibling should be let off the hook because “he had a difficult upbringing.” Don’t these people realize you grew up in the same house with the same screwed up parents? – Debra H.S.

Any comment the begins with “just be glad…” – Tammy H.H.

“You’re just a caregiver, you don’t have a real job?” – Debra R.

I hate it when people ask me what I do all day. I am a caregiver and it isn’t easy! – Kim P.

People ask some very personal questions. I don’t know when it became okay to talk about my husband’s hygiene and sex life, just because you’re curious. I just roll my eyes when people inquire. – Mandy L.

Don’t tell them not to worry because their loved one won’t be around forever. – Elizabeth M.F.

My pet peeve is when people comment, “I know just how you feel!” Reality is you can’t possibly know how I feel unless you live the EXACT same life I have. Even if you are an only child caring for your mom with TBI/Dementia and you pulled up stakes to take care of things…you really don’t know just how I feel. – Cameron G.

“You’re not working outside the home, so you have PLENTY of time! I’m just too busy ’cause I’m single and have to do everything for myself.” – Jeannette B.L.

“[People said] my mom was selfish for continuing to live on so I can continue to take care of her. That was the most hurtful thing I had ever heard. I cry and my heart breaks every day. My mom passed from breast cancer this past Feb. I took care of her until her last breath. I would do it over and over.” – Helene B.

So, what should you say?

Words are cheap…go over and help…drop by with a treat…vacuum the living room…or sit with loved one..so caregiver can get out…the thing I prefer to hear…is from someone in same position..saying…I know it’s hard…because…it validates it somehow…the most helpful thing said to me at the beginning of this journey came from my best friend..who also cares for her mom with dementia…I was bawling from the range of emotions I was feeling…and feeling lost…she said…so you don’t recognize yourself…eh?…I was so relieved…that she had those feelings as well…I so needed that emotional support…no I didn’t recognize myself…and neither did she…and it was okay… – Beth S.

There’s a saying in Spanish (Quieres se murió. Toma lo mató.) that, translated, basically says: ‘Don’t ask, just do.’ Don’t ask me to call you if I need a break. Ask me which day this week you can relieve me. – Maya S.

Tembi has other suggestions for how to make a caregiver’s day over at The Kitchen Widow.

Learning to forgive myself

Learning to forgive myself

Do you feel like you’re doing the best you can, all the time?

No matter how hard I try, it gets to me sometimes. Love alone isn’t enough for me to not lose my cool. Maybe it should be. Maybe it is for you. (is it?). But the pressure mounts…the bills are piling up, insurance is denying pre-approved claims, the laundry, the dishes, meals to be cooked, lunches to be packed, the mortgage is late. My boss is losing patience with how distracted I am and how I’m always late.

Sometimes I lose my cool. I yell. Or I just get that tone in my voice that shows how annoyed I am. And then I feel so guilty.

So guilty and so tired. I’m just so tired all the time.

It helps to hear how other caregivers feel this way, too. That maybe it’s not great, not okay, but understandable for me to not be as good as I want to be all the time.

“you’re doing the best you can, under difficult circumstances. Try not to be so hard on yourself, okay?” Denise M. G.

“forgive yourself, for not being able to do the impossible and for your very normal feelings. Those are feelings of frustration and they do not lessen the love you have for your parents…I had assumed I had to caregive alone, but then I found that there had been people I could call on for help all along. I should have spoken up.” – Nancy L.

“The hard truth is you can only do as much as you can do. It is terribly hard for us to accept that we cant fix it or do more more more. The best and most that we can do for those we love and care for is to love them and do what we can within reasonable parameters. You are giving them all that you can and you love them you have to accept that.” – Barbara F.

We all lose it from time to time. Whoever says they don’t probably doesn’t even know they did. Yes, Forgive yourself and move on. Longterm Caregiving is the hardest thing ever to do.” Diane L.B.

“Forgive yourself…..it happens to all of us more than we would like others to know! Being tired and stressed gets to the best of us and few among us are saints…we all do the best we can and just keep going!” – Micki T.

How do you keep your cool? And how do you forgive yourself when you lose it?

Guide to cancer resources

Guide to cancer resources

The Caregiver Space is here to support caregivers, but we’re not the only organization that’s here to help! Here are resources our community has found helpful. Please note that this isn’t an official endorsement and we’re not affiliated with these organizations.

Is there an organization or resource that’s helped you that isn’t on the list? Let us know.


General Information & Support

The American Cancer Society

For more than 100 years, the American Cancer Society (ACS) has worked relentlessly to save lives and create a world with less cancer and more birthdays. Together with millions of our supporters worldwide, we help people stay well, help people get well, find cures, and fight back against cancer.

The American Institute for Cancer Research

30 years ago, the American Institute for Cancer Research was founded on a simple but radical idea: everyday choices can reduce our chances of getting cancer. We were the first organization to focus research on the link between diet and cancer and translate the results into practical information for the public. AICR embraced the mission of changing lives to save lives.

CancerCare

CancerCare is a national nonprofit organization providing free, professional support services to people affected by cancer. Services include counseling and support groups, education, publications, workshops and financial assistance. All services are provided by professional oncology social workers and are offered completely free of charge.

Cancer Commons

Cancer Commons, founded in 2011, is a non-profit network of cancer patients, physicians, and scientists dedicated to improving outcomes through precision oncology. Our mission is to ensure that patients are treated in accord with the latest knowledge available, and to continually update that knowledge based on each patient’s response. By tightly integrating research and care around individual patients, Cancer Commons aims both to dramatically improve individual outcomes and slash the time and cost of drug development.

Cancer Hope Network

Cancer Hope Network is a national organization offering personalized one-on-one support to people diagnosed with cancer and to their caregivers. Through our Vision, we are committed to strive for excellence in everything we do and to provide the highest quality of service to those calling for support. With over 400 cancer support volunteers representing more than 57 types of cancer; our Mission, through the delivery of our services, is to instill HOPE, ensure no one faces cancer alone and make a positive difference in the lives of those who have been diagnosed with cancer as well as those who care for them.

Cancer Support Community

The Cancer Support Community is an international non-profit dedicated to providing support, education and hope to people affected by cancer. Its global network brings the highest quality cancer support to the millions of people touched by cancer. These support services are available through a network of professionally-led community-based centers, hospitals, community oncology practices and online, so that no one has to face cancer alone.

Triage Cancer

Triage Cancer is a national, nonprofit organization providing information and resources on the full spectrum of cancer survivorship issues to patients, survivors, caregivers, advocates, and healthcare professionals, through a national Speakers Bureau, educational events, and online tools. Triage Cancer also offers an educational blog.


Supplies and Support

Savor Health

Cancer starves people of nutrition. We use nutrition to fight back. Nutrition is one of the few things in life you can control. We use the latest research to design personalized nutrition solutions that meet your unique needs. Savor Health is like having your own personal nutrition concierge. Whether you need someone to do it for you (Delivery), empower you to do it (Information) or answer your questions (Counseling), Savor Health is the comprehensive nutrition solution to address all of the nutritional issues experienced by cancer patients and their caregivers. We’re in the business of nourishing the body, mind and spirit of people with cancer.

Best Friends for Life

A fashionable line of bags, bras and surgical accessories for the modern age of medical treatment. The Breast BFFLBag® and axilla•pilla® were launched in 2011 to enhance the breast cancer patient experience. Since then, BFFL has created the Neuro/Brain BFFLBag® for patients recovering from Traumatic Brain Injury, Brain Trauma, Concussion, Brain Tumors and Stroke. The Mommy/Delivery BFFLBag®, Prostate BFFLBag®, and many comfort bras and recovery accessories are among the newest additions to the BFFL Co product line. For each condition-related BFFLBag® sold, BFFL Co will donate 15% of the proceeds to a charity providing research and support for that condition.

Brave Girl Boxes

Brave Girl Boxes is one way for women to remember and believe that people are rooting for their survival! After all, if you’re going into battle, you need the proper tools to stay strong, to be positive and to feel empowered. The boxes are intended to deliver love, encouragement, hope, understanding, nourishment, connection and comfort. Women need to feel that they are not alone so they can bravely move forward and fight! We deliver COURAGE to women newly diagnosed with breast cancer.

Fifth Season Financial

Since 2007, Fifth Season has provided more than $60 million in financial assistance to nearly 400 families who have an advanced stage illness or advanced cancer. Fifth Season Financial provides loans to people living with advanced cancer, secured solely by the face value of their life insurance policy. The goal of our “Loans for Living” program is to provide individuals access to discretionary cash locked up in their life insurance policy, while preserving a portion of the policy benefit for the insured’s beneficiaries.

Wellist

Wellist connects you with help when it matters most. Wellist is a one-stop resource of healthy living services customized for patients and caregivers. Easily find transportation, support groups, acupuncture services, grocery delivery, and more from a database of over 3,000 different organizations and nonprofits.


Young people with cancer

Stupid Cancer

There are 72,000 people age 15-39 diagnosed with cancer each year, but young adult cancer patients are overlooked by researchers and organizations dedicated to supporting cancer patients and their loved ones. Stupid Cancer addresses young adult cancer through advocacy, research, support, outreach, awareness, mobile health and social media.

St. Baldrick’s Foundation

More children in the US die from cancer than any other disease, yet many treatments are based on what’s worked for adults. Curing cancer in kids isn’t enough — by the time they’re 45, more than 95% of survivors will have a chronic health problem and 80% will have severe or life-threatening conditions because of their childhood cancer treatment. St Baldrick’s is raising money and raising awareness to change that.


Diagnosis specific resources

Mesothelioma Community

We provide mesothelioma patients with free resources, support, education, and referrals to experienced mesothelioma doctors. We are a current sponsor of the American Cancer Society, MD Anderson Cancer Center, Make a Wish Foundation, and the National Patient Travel Center. We’ve also established a scholarship for high school and college students that will help further educate students of this rare cancer.

 

Advance directives: Dying without deity

Advance directives: Dying without deity

Advance directives are an important way to ensure you and your loved ones receive the type of care and memorial services that are in line with your wishes and beliefs. Many healthcare systems are affiliated with a particular religion and family members may wish to impose their own beliefs on others. In those cases, it’s especially important to document your wishes and share that information with your family and healthcare providers long before it’s needed.

The Institute for Science and Human Values invited Debra Smietanski and Carol Anne Johnson to outline the steps to necessary to prevent unwanted religious intrusion through advance directives.

 

Turning healthy habits into a game

Turning healthy habits into a game

For the past two years, Mango Health has been working to make sure patients take their medicine.

There are lots of medication reminder apps, so what makes this one unique? Mango Health’s team comes from the world of online gaming — they know how to get people logging in every day. Over 1 in 3 people who sign up are still using Mango Health to make sure they’re taking their medication as prescribed after a year. Three in 4 people are using the app every single day. That’s huge.

Mango Health goes beyond just tracking your medication. The app now tracks hydration, weight management, exercise, blood pressure, and glucose. It’s available for iOS and Android.

We got a chance to ask CEO and co-founder Jason Oberfest some questions:

Health isn’t necessarily something you have previously done in your career. What was your inspiration for Mango Health?

Yes that’s correct, I was previously an executive at one of the first iPhone and Android game companies called ngmoco (“next generation mobile company”). Mobile gaming may seem like an unusual background for building a health app like Mango Health, but we believe a key to changing outcomes in healthcare lies in building products that consumers want to use every day—especially in the area of chronic condition management where you need to continually inspire patients to think differently about managing their health. The idea with Mango Health was, “What if we could take everything we ever learned from making mobile games, and uniquely apply that to health care?”

We started with medication adherence because we believe it is a critical first step towards better health for millions of people. Approximately 4.2 billion prescriptions are written a year in the United States. 4 in 5 U.S. adults now take some combination of Rx medications, OTC meds, and supplements each week and yet 3/4 people don’t take meds properly. This is especially true for the big chronic conditions like hypertension, high cholesterol and type 2 diabetes. These conditions are often asymptomatic in nature—the patient is often not feeling the effects of the disease every day, and as a result the patient is often not motivated to comply with treatment. Because we know how to build products that people want to use every day, we felt that our skillsets could transfer in a compelling way to daily health management.

The fun, upbeat messages in your notifications are a great touch. How did you come up with your wording? Were you specifically seeking to help improve people’s outlook?

We want to provide an engaging, delightful experience. We want to take an area that for many people is mundane—managing a chronic condition every day—and redefine that experience. Upbeat wording and positive communication is a big part of the app and our brand, but another major factor is the bright and colorful imagery. We believe strongly that taking care of yourself can be easier, less intimidating, even fun, and we do our best to evoke that attitude in every detail of Mango Health.

Is there an anecdote you can share about Mango Health helping people avoid dangerous drug interactions or understand potential side effects?

Oh, there are so many! It’s a bit surprising how often people write to highlight how much they appreciate the drug interactions information. One woman recently wrote on our Facebook page about how she had been experiencing symptoms that had been getting worse and worse over the past two years. Because she had received the app’s interaction alerts in a more digestible format, she was able to go to her caregivers and discuss it with them. Now she and her providers are tweaking her medication regimen to see they can improve her quality of life. Stories like these are a perfect example of how we aim to help people feel more informed and thus empowered to take care of their health.

create a schedule of healthy habits using mango healthWhat is the main takeaway you want readers to know about the goals and mission of Mango Health? Is there any advice you can give to caregivers?

We may have started with medication adherence, but our vision is to be the go-to platform for many aspects of daily health management. We’ve added features to support patients in building other healthy habits like tracking blood pressure, weight, and steps walked regularly.

In terms of advice to caregivers, I’d say that the rise of smartphones has created a really unique opportunity to rethink how healthcare is delivered. I’d encourage them to consider embracing digital health — especially applications like Mango Health that patients really want to use every day.

Can you suggest another company that’s doing something interesting to gamify healthcare?

GymPact is a health company using game mechanics that I find really interesting. Essentially, the product uses a social pact system to incentivize healthier lifestyles. So every week, you make a health-related pact with a few of your friends or loved ones — for instance, to exercise more or eat healthier. You use the app to track your progress, and as a part of the pact, you set the price you’ll pay the others in your group if you don’t reach your goal. If you do keep your end of the pact though, you’ll win your part of the pooled wager. As with the Mango Health app, you then actually earn real rewards for living healthily!

It’s often hard to stay motivated about maintaining health. It’s classic human nature: out of sight, out of mind. We’re glad to see more and more companies using principles of game design and general delight to help inspire people to think differently about managing their health.

On the road, disabilities and all

On the road, disabilities and all

Tourists in electric wheelchairs on Parliament Hill. Ottawa, Ontario. Canada.When people talk about what’s important to them or what they want to do when they retire, so many people talk about wanting to travel. If you and your spouse — or your parent or your BFF or your kids — always talked about that trip you were going to take someday, disabilities don’t have to stop you from living your dreams. Sure, it takes extra planning, but there are resources and experts out there to help. Plus, the things that go wrong are part of the adventure, right?

Accessibility

Group of beach wheelchairs on sand with palm trees on backgroundEurope is known for narrow streets with stairways and tiny elevators, but there are plenty of people with disabilities living full, enriching lives there. How do they do it? Oftentimes, downtowns have accommodations that may not be obvious until you look for them. There may be an elevator accessible only to people with disabilities, a more private bathroom in the back, a temporary ramp to unfurl, wheelchairs to borrow, and people to assist you to fill the gaps. Local tourism offices are a great resource.

Anxiety

STARBRITE Traveler: A Travel Resource For Parents Of Children With Special Needs

Plan the best vacation for everyone in your family Identify special provisions and accessibly for your child with special needs

Many caregivers find establishing a routine to be critical — traveling throws that out the window. Going to new places, talking to new people, eating new foods, and staying in an unfamiliar bed can cause considerable anxiety, even before we factor in adjusting medication schedules and preparing for special diets.

Jessi Jones retired from her job as a special education teacher with a MSW to co-found Abeon Travel. She and her partner help families accommodate sensory issues and prepare anxious travelers for what to expect each step of the way. While every hotel is required to comply with ADA requirements, Jessi helps families find hotels and attractions that go beyond the minimum requirements — from braille menus to staff dedicated to making sure everyone has a good time.

Security

Louie Clay travels fairly regularly, so he knows to let the security screeners know about his pacemaker. As a 78 year old man who uses a walker, screeners generally understand that he is physically disabled without having to ask. Except when they don’t.

Louie Clay raising his arms as high as he can

Louie is ready to comply with security procedures, but cannot remove his shoes while standing or raise his arms higher than shown above.

When he was unable to lift his arms high enough to satisfy a TSA official, they ordered him to take off his shoes. Officers refused to provide a chair for him to sit in, although he’s unable to bend down to untie his shoelaces. While the TSA has policies in place for travelers who are elderly and/or disabled, these do not appear to have been followed.

Not only did he nearly miss his flight, despite having given himself an hour to get through security, he was treated with contempt simply for being disabled. He received no response to the complaint he filed with the TSA.

Airport security and airline staff have made public missteps in how they’ve treated people with disabilities and their traveling companions. There are plenty of happy endings, too. United Airlines recently had a special ‘flight’ for children with autism. They were brought through security, boarded a plane, and pretended to fly in a program designed to help kids get used to flying. The idea is that, now that they’ve done it, going back to an airport will be less stressful and more fun.

airport priority seatingTraveling with disabilities

The US Department of State has information on how to have the best possible travel experience.

As Susan Sygall, of Mobility International USA, said to Rick Steves “Bring along an extra pair of pants and a great sense of humor.”

Really, that’s good advice for all of us.

Tips for travel

  1. Call ahead. Places may be able to accommodate disabilities with advance notice. Accessible rooms may be limited in number. With enough planning, you can work around these issues.
  2. Talk to your treatment team ahead of time. Your doctor may have tips for managing a long flight, provide extra medications, or other helpful suggestions.
  3. Use a travel agent specializing in accessible travel if your trip is long or complex. There are many tour companies that specialize in accessible travel opportunities.
  4. Give yourself extra time. Airport personnel should be versed in assisting travelers with disabilities, but it’s not safe to assume they will be.
  5. Plan your route. Local guides can help you find routes around town that eliminate inclines or can arrange for whatever transportation needs arise.
  6. Know your rights. Being flexible doesn’t mean accepting mistreatment.

Need some inspiration? Check out the Disabled Travelers Guide to the World for some pictures — and tips — that will have you booking a flight in no time!

Become a home care champion

Become a home care champion

America needs more caregivers for our rapidly aging population, but we don’t provide them with a living wage or adequate workplace protections. Low wages lead to high turnover and poorly trained staff. Stressed out workers come to work sick because they have no health insurance or sick days. Workers are less reliable because they can’t afford reliable transportation or childcare.

Many caregivers make less than $10 an hour — meaning they’re impoverished, even with a full-time job.

Learn more about Fair Pay for Quality Care on the North Carolina Justice Center. Keep reading to hear from family and professional caregivers who are struggling to make ends meet.

Professional caregivers

I was an in home caregiver for 4.5 years. While always living frugally I always had to have a roommate. My income was not consistent due to the eventual passing of clients. It would take some time before I could acquire a new client. In the interim my check would drop dramatically and I would struggle to survive. How much is competent and compassionate care for your fragile loved ones worth? Minimum wage? I think it’s worth much more. – Judy H.

I’ve never understood why caregivers make as much as someone who works fast food. I’m taking care of a life. – Donella B.

I am a professional CG and I work 60 hours a week and I spend 10-12 hours a week in traffic. People think I am a bad mom for working so much because I do not get to spend much time with my son. The reality is that I wish I would spend more time with him but this job does not pay a decent wage so I can afford to work only 40 hours a week. People assume that because this is a job that requires skills and continue education, lot of knowledge because of the nature of the people we work with (vulnerable adults) we make lots of $$$, the true is most caregivers work very hard but they are at the limit of poverty, they are sleep deprived and their health is poor. – Andreea S.

My son is a home healthcare worker and a good one. He says that his company has to hire the worse people because of the low pay. – Marty C.

My mother pays a fortune to live in a memory care alf but the caretakers themselves don’t seem to make much money, some work two jobs unless they are nurses or administrators. – Gay R.

The US only recently extended basic workplace protections to over 2 million home care workers. Help make sure these protections are enacted.

Family caregivers

Family caregivers should be paid. Informal caregiving is the largest part of long term care. Other countries pay informal caregivers a living wage. It can be done. – Jeananne E.

It makes no sense to me that I should be in danger of losing my home when my IS passes, or starving to death or letting my own health go to hell because Ive had to give up any income I had in order to take care of him. Family caregivers deserve to be paid, same as homecare providers. We lose everything over the course of our loved one’s illness. – Lona S.

Financially, it is devastating, not only at the time of being a caregiver, but will catastrophically affect the caregiver financially for the remainder of their life. Prospective employers don’t care about the reason for the gap in employment history, nor do they consider the skills, knowledge, or work ethics involved. The IRS gives tax credits on so many things, but not on the most important thing… caring for life. – Dawn K.

We need to get louder and stop feeling like ‘oh, it’s out of love.’ Of course it is, but do we need to lose everything out of love, too? -Cinnamin M.

Use the Eldercare Financial Assistance Locator to sift through the maze of programs to provide financial assistance for eldercare. Then contact your elected officials and let them know you need more help.

We’re in it together

I am currently using a health care agency that sends a home health aide for my mother. I have left my job to care for my mother, but needed additional help. The problem is that these agencies charge $20/hr, which is high. However, the aide only gets paid $9.00/hr. These agencies are big business that are capitalizing on the elderly. Pay these caregivers more and make a little less for the business. I regard these jobs as very important. We are entrusting them to care for the people that mean the most to us. – Josephine F.

I’ve seen in the past [families] who can’t afford to pay much and only hire someone for a few hours and then leave them home alone the rest of the time. The whole thing is a mess. – Tracy T.

I’m a caregiver for my husband and CNA money isn’t that great. I can make more as waitress. – Debbie T.

Why would anyone NOT want to pay (handsomely) those that care for the ones that we love most? – Cherie R.

Social Security, Medicare, and Medicaid help keep seniors out of poverty and in their communities. Sign this Caring Across Generations petition to urge your elected officials to support these programs.

Some responses have been edited. You can view the originals here.

Is it possible to have a significant other while taking care of your parents?

Is it possible to have a significant other while taking care of your parents?

Many people put their lives on hold when they first step into a caregiver role. That’s fine for short-term caregiving, but putting your life on hold for years or decades means a life unlived.

Finding someone that fits into the lifestyle is difficult but not impossible. I found mine, just took 4 yrs lol we are still strong and loving one another 8 yrs. He is a home body too (perfect as they get). – Donna Marie B.

I had tried dating a few men during the course of taking care of my Mom and they were either too needy, jealous, or did not understand. Deciding not to date eliminated dealing with any of that and just focus on her and what she needed. So it’s not impossible, but finding that one person who is willing and able to not be 1st but maybe a close 2nd and understanding of your caregiving job is like finding a pearl. They are very rare. If you have found or find that person hold onto them. – Michelle R.

I tried [to date]. I take care of my mom, and she gets so upset thinking that I will meet someone and leave her that she ends up in the hospital if I go on a date. I’m not exaggerating. So, I don’t date anymore. I’ve never married or had children, never had a LTR, and I have to let go of those dreams. My mom doesn’t really like me to go out except to grocery shop or to doctors. – NC L.

I just found mine. It’s only been a little over a month, but he is so understanding about my situation. – JoZena G.

I’ve been a caregiver for my Mom for about 10 years now, and have had zero dates in that time. Besides not being able to get out much, I’m afraid I might also slip back into being almost painfully shy around women. – Ed R.

I am a live-in caregiver for a lady and have no time or means to meet any body. It’s a 24/7 job. – Karen P.

I’m the youngest of four and at 47 have given up hope of meeting anyone again, either. I was in an abusive relationship, was always accused of caring for others more than her. She’s a chronic alcoholic who when sober (rarely) was fit and able to look after herself and hold down a job. Meanwhile, I was caring for my niece who is now 36 and has a brain injury, my Dad who passed away about a month ago and I am about to officially take over care of my Mum who totally dropped her bundle once my Dad took a turn for the worse in May and she is not able to take care of his affairs or her own. Somewhere amongst that I lost myself. My siblings won’t speak to my niece or my Mum, who tells me she needs me and I am better off alone after the last one. I kinda don’t blame her for that. I have multiple physical disabilities and PTSD due to her actions. I feel so alone and wish there was somebody out there who would care for me and my ‘baggage’ as my ex called them. I call them my family. My fault is I love and care too deeply and get hurt. Some people are so cruel. Something I will never understand as long as I live. I care because to the core of my being it was what I was bred to do. It’d take one very special person to lure me away from doing what I do out of love. – Beth C.

I just never tried to find a husband as I’m to busy with taking care of my two elderly parents suffering from Dementia. They always acknowledged that my being single was the reason I was/am a 24/7 caregiver to them. But it would break my heart if I felt my parents wouldn’t support me finding happiness. – Janet S.

I sacrificed my college choice to help take care of my Father when he suffered strokes. He passed in ’03. Then I vowed to always care for my Mother who passed 2 years ago. Almost 10 years after my Dad. I sacrificed more than just college in the process, though. I didn’t realize it at the time, but I was falling into a comfortable trap of not getting out to meet people and got used to not dating. I had squashed that need for so long that I let loose after my Mom died. I still would prefer to be out instead of staying home but its not as bad. Now I’m 44 years old with no kids or husband to speak of. Yes, true, my choices. But given the circumstances of being an only child, they were choices I had to make a certain way. I would never do anything different either. I’m not complaining, don’t get me wrong, because in a bittersweet way I have my life back, but it’s without my best friend in the entire world, my confidant, my soul mate — My Mom. And it just so happens that now that I do have my life back I have no one to share it with or no little ones to pass the amazing lessons onto that my amazing Mother taught me. – Michelle R.

Even for people who are in a committed relationship, maintaining a relationship takes work and time. Caregiving brings some couples closer and tears others apart.

It has definitely brought my husband and I closer – a new dimension to our relationship; first his mom lived with us and now, we have been caring for my mom under hospice for the last year and a half. Precious moments! – Lemia L.

Trying to take care of two parents with no siblings, turned down for medical assistance, has taken a huge toll on my relationship. – Jacqueline A.

When my mom was diagnosed with ALS, my husband (of 14 years) said as long as I didn’t forget about him, he didn’t have a problem with me taking care of her on the weekends. It only lasted for 2 months, as she passed away very soon after diagnosis. My dad was a mess, so I helped him as much as I could, being an hour away. 14 months later, he asked for a separation. Which worked out, as a year after we separated, my dad was diagnosed with FTL dementia. – Deborah C.

I cannot begin to tell you the strain that categorizing has put on my marriage. I would like to just be able to go out with my husband without having to use subterfuge. Our lives…our privacy…are gone. It is what it is. We are trying very hard, but it is indeed the hardest thing that has ever hit our marriage.- Beth S.

Are you ready to give dating a shot? Here are Allison’s tips for dating as a caregiver.

The Care for All Veterans Act

The Care for All Veterans Act

Right now there’s a major oversight in the programs available through the Department of Veterans Affairs. Their family caregiver program only covers members of the Armed Forces or veterans who are seriously injured or became ill on active duty after September 11, 2001.

That leaves a lot of veterans without the support they need. But a bill was introduced to Congress this summer designed to change that. If passed, services currently provided to families of post-9/11 veterans will be extended to veterans who served before 9/11.

The Care for All Veterans Act is sponsored by Rep. Elizabeth Esty. Please call or write to your representatives to encourage them to support our veterans and their families — and all caregivers — by passing bill H.R.2894.

Image: Joseph Sohm / Shutterstock.com

Remembering & honoring our grandparents

Remembering & honoring our grandparents

So many of us have grandparents who have already passed. We each find different ways to honor their memories.

What traditions does your family have to remember your grandparents?

My grandparents were so in love. They married at 18 and were together for the rest of their lives. They’ve been gone for six years now, but my whole family still gets together every year to toast their anniversary. They’re the reason we’re all here and they were such an incredible example for all of us. – Nicole R.

I light a candle at church for my grandmother every week. – Michael D.

Before my grandfather passed I sat down and did an oral history with him. We spent weeks on it, sitting around the kitchen table talking. I learned so much about him. I edited it and we had books printed for our whole family. My sister went through all the family albums, scanned and labelled the best photos, and added them into the stories. The books are lovely. But the thing I cherish the most is the tapes. Listening to his voice is like having him here with me again. – Doris W.

We talk about our grandparents all the time. It’s like they’re still here with us. They were such warm people. They made us who we are. – Barbara D.

My grandparents died before my kids were born, but I always give them presents “from their grandparents” on their birthdays and Christmas. Each year I have them make their grandparents birthday cards and I tell them stories about them. – Deanna J.

My grandfather was a hero in WWII. When I was in high school I made a children’s book about him. Now I read it to my son as a bedtime story. – Bernadette G.

I sleep with a quilt my grandmother made me before I was born. It means she’s always here with me. – Annie K.

Every recipe I make is from my grandmother’s cookbook. – Susan E.

I found the letters my grandparents wrote to each other while they were dating. Sometimes I’ll sit with a cup of tea and read them. – Jennifer P.

My grandparents loved animals. I volunteer at an animal shelter in their honor. – Mara H.

We have a mass in honor of my grandparents each year for their birthdays. – David R.

My family has vacationed at the same spot on Fripp Island every year. My grandparents went there on their honeymoon and loved it. Now it’s tradition. – Vita J.

Every time I go fishing with my son and his cousins, I think of my grandfather. He’s the one who always took me fishing and it was what brought us together. – George M.

Seniors & chronic conditions

Seniors & chronic conditions

4 out of 5 seniors suffer from at least one chronic condition, according to AARP. We’re here to help our loved ones manage their conditions to they can continue to live a fulfilling life — so we can, too. As part of our coverage for Grandparent’s Day, I’m sharing some of my favorite resources for the most common chronic conditions faced by grandparents.

Studies show that 25% to 50% of patients don’t take medications as prescribed. PillPack makes it easy for seniors to take their medications correctly, by creating custom packets of pills and eliminating the need to keep track of refills or go to the pharmacy.

Cancer

Cancer is the second most common cause of death among people over the age of 65. In fact, nearly 1 in 4 seniors are living with cancer. Now that cancer treatment has advanced so far, it’s become a chronic condition for many survivors.

Meals to Heal provides guidance on how to provide the nutrition you or your loved one needs to stay strong during cancer treatment and the best ways to reduce symptoms to improve quality of life.

Diabetes

1 in 4 seniors has been diagnosed with type 2 diabetes, a disease that can have serious complications.

The American Diabetes Association provides a free guide to living healthy with diabetes for seniors. MySugr provides apps and tools to track and manage diabetes.

Heart disease

How common is heart disease? According to the CDC, “heart disease affects 37% of men and 26% of women 65 and older” (source).

Are you helping a loved one track their blood pressure? Hello Heart is an app designed to make your life easier by making it easy to track and understand your blood pressure.

Alzheimer’s & dementia

One in 3 seniors has dementia at the time of their passing, according to the Alzheimer’s Association. Over 5 million people in the US have ALZ, a disease with a heavy care burden for years or decades.

We’ve partnered with ALZ Live to bring you guides to navigating healthcare in the US & Canada.

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.

7 tips to make working from home easier

7 tips to make working from home easier

The ability to work from home makes so many of our lives easier. Of course, easier isn’t the same as easy.

7. Set hours

One of the benefits of working from home is being able to have flexible hours. It’s great to be able to take an afternoon off to take someone to an appointment. However, if I don’t set hours for myself I can end up accidentally working way more hours than I should and no one knows when I’m ‘on call.’ Set hours based on the schedule that works best for you, your coworkers, and the person you’re caring for. It’s fine to adjust it from there, but try to stick to a schedule.

6. Set boundaries

Yes, you’re home so you can provide care, but that doesn’t mean you’re available 24/7. Set times when you’ll be available to help and other times when you’re off-duty for anything other than emergencies.

5. Make space

As tempting as it is to keep someone in sight at all times, it’s incredibly distracting and makes it impossible to set boundaries. Create an office area (even if it’s a corner or the kitchen table outside of meal times) and make sure everyone understands that if you’re in your ‘office’ you’re busy with work.

4. Work together

Depending on who you’re caring for, you might be able to work together. Sure, they might be coloring, knitting, or working on a game of solitaire, but it’s a great way to keep someone with you and still get work done.

3. Get out

When caregiving duties are heavy, the office can easily become your only social time. Use the time you save by not commuting to see your friends, go for a walk, and have some time to yourself. These things are key to staying centered and focused — for work and caregiving.

2. Get help

If you need undivided attention for an important project or work is starting to pile up, it’s time to get help. Get a friend, family member, local volunteer, or professional caregiver to give you a break so you can catch up.

1. Connect with other caregivers

Sometimes your friends just don’t understand what you’re going through and that’s okay. Connect with other caregivers — here on our forums and through local organizations — to share advice and talk to people who get it. Plus, you can team up with other caregivers to pool your errands, find great professional caregivers, and give each other breaks.

9 tips for getting ready for surgery

9 tips for getting ready for surgery

Millions of people have surgery every year and nearly all of them have a friend or family member helping them through it. If you’ve been called upon to help someone with a surgery scheduled, here are 9 tips to help you care for them:

9. Know the options

Talk to their doctors about all of their treatment options. Get a second opinion. Look through their chart, with their permission, to make sure nothing is being overlooked. If you do the research to make an informed decision you can know you made the best choice, even if things don’t go as planned.

8. Get instructions

Surgeon’s instructions may not get to you. If you can, go to appointments with the patient and make sure to get instructions for pre- and post-op care. Check with each doctor on the treatment team and call the hospital where the surgery is taking place to make sure you’ve gotten all instructions and to resolve your questions.

7. Get training

Post-op care might include medical care you’re not familiar with. Find out what care you’ll be expected to provide and what training is available.

6. Legal talk

This is the time to make sure their paperwork is in order. Make sure they have a medical and legal power of attorney. Talk over what treatment they want should anything go wrong. It’s critical to have these decisions made ahead of time and document them properly.

5. Get prescriptions ahead of time

Make sure the doctors provide you with prescriptions and information on any equipment you need ahead of time. I learned this one the hard way.

4. Be aware of possible complications

We always hope for the best, but surgery and anesthesia can have a range of complications. Find out about common complications, what signs to look for, and what the treatment would be.

3. Schedule backup

Caregiving can be especially intense after surgery. Set up a care page to schedule respite care, meal delivery, and help with errands. You can set one up for free on Lotsa Helping Hands, Tyze Personal Networks, or another care scheduling tool.

2. Help them follow pre-op instructions

Do what you can to help them get enough sleep, eat healthy, and follow any other instructions they were given. Be sure to let the doctor know if any instructions weren’t followed, as they may need to modify the care they give.

1. Acknowledge your stress

A looming surgery date can create all sorts of nerves. Being an informed patient helps dispel fears by helping you know what to expect, but it’s still important to acknowledge your feelings. This is a great chance to write it out in your journal and check in with friends.

Alcohol and chronic pain

Alcohol and chronic pain

A quarter of people with chronic pain use alcohol for pain relief. Doctors and caregivers have major concerns about the potential for interactions between alcohol and pain medications — and the potential to develop an addiction.

Estimates of addiction among people suffering with chronic pain vary from 3% to 40%. Some studies claim that alcohol does not reduce pain while others say it’s effective at reducing symptoms.

Before modern painkillers became widespread, alcohol was commonly used to manage pain. The earliest evidence of alcohol as medicine was found in the tomb of Scorpion I, one of Egypt’s first pharaohs. The argument for alcohol as medicine became popular again during prohibition.

Today, scientists are looking at alcohol to see if our ancestors were right in thinking moderate consumption has benefits for everything from diabetes to dementia. It can be tricky to get approval to conduct studies on alcohol, since doctors are hesitant to potentially expose volunteers to harm.

In a study, published in Arthritis Care & Research, of 2,239 individuals with chronic widespread pain, the key feature of fibromyalgia, those who regularly consumed alcohol had lower levels of disability than those who never or rarely drank.

Those who drank 21 to 35 units of alcohol per week were 67% less likely than never drinkers to experience disability. (One unit of alcohol is a half pint of average strength beer, one small glass of wine, or one single measure of spirits.)

“Although we cannot say that alcohol consumption causes less disability among people with chronic widespread pain, the observed link warrants further investigation,” said Dr. Gary Macfarlane, co-author of the study.

Of course, the correlation isn’t causation. This is an early study and doctors agree on one thing — they don’t know enough about the potential health benefits of moderate drinking to suggest it.

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.

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