Spousal Caregivers

Dealing with a spouse’s disability.

This topic contains 14 replies, has 4 voices, and was last updated by  JeannineDay 8 months, 2 weeks ago.

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  • #11220 Reply

    David Waterman
    Participant

    I found that in spite of the being a volunteer caregiver and a carpenter to build wheel chair ramps for disabled people as well as widen doors and remodel baths etc. I really did not know all the issues that went into caring for a family member with a serious disability.
    I am now a writer having become partially disabled myself and I have been campaigning to bring care giving to the attention of the public as much as possible.
    One of the ways I did that this week was to write an article for CNNiNEWS to point out the issues family deals with when a family member is disabled.
    Here in NM Care giving is a huge issue but one where there is very little support for the care giver.
    It is very difficult to get enough resources and finances flowing to cover the many issues that we face as care givers.I was holding a full time job, dealing with multiple sometimes life threatening issues my wife was living through and we also had her daughter in the house who was not working, not contributing and stealing meds and supplies for her illegal drug habit. It became a mess that exploded this past summer resulting in even more stressful issues and I burned out.
    Hope we can lobby and campaign with lawmakers to make a difference for all of us in the future.
    http://ireport.cnn.com/docs/DOC-1220089
    David

  • #11222 Reply

    Veronica

    I too Am a caregiver for my spouse. He was injured in an auto accident in September 2012 leaving him at T10 t12 paraplegic. post-accident I try to maintain a full time job while caring for him and our Young daughters. I was let go from my job in January of 2013 which left me jobless but able to care for him on a full time basis. I totally understand the caregiver burnout. although I have gone back to work on a part time basis now I feel the burn out every single day and find myself crying for no reason. he deals with pressure switch aren’t healing and constant pain I feel like we can’t move forward unless his injuries can heal I get no help and don’t know where to turn no one understands what I go through on a daily basis and I get nowhere. He gets frustrated because I get short but I feel like I can’t burden him with how I feel due to his illness. So that leaves me keeping everything in and crying Alone. Hes too proud to have anyone else come to do dressing changes or bowel regimen

  • #11234 Reply

    David Waterman
    Participant

    Veronica,
    I can certainly identify with what your are going through. The issue of not allowing anyone but you to help is typical of many in your husbands situation. My wife is also very particular about who she will allow to help her. The one issue that I had to learn to deal with was the side effects of the various meds she was taking. It is a very real mood changer for the invalid. I do want to urge you to have a frank talk with your husband. The person in the wheel chair or bed often does not realize the stress they put on others. They also loose all sense of time as we know it as they are laying or sitting for long periods and don’t have schedules or appointments in mind like we do. Be gentle and self controlled when talking but make it clear about what you do and how much time it takes to do tasks you deal with.
    And arrange some kind of ‘me time’ for yourself. If you don’t your melt down will continue until you are of no value or use to your self or your husband.
    I don not know if you have any particular faith or church affiliation, but for me it was a life saver as it gave me fellowship with other people who were not dealing with as much and I also got to know some of the other people that were care givers. And this brings up another group you should seek if it is available. Albuquerque is big enough there are caregiver support groups that meet together here. If you are able to find someone to get together with in that way do it! It works wonders to keep a person focused and grounded.
    I am going to be writing articles and contributing to this site, so I will address some of the issues in upcoming articles. Hang in there! You are not alone and don’t stay alone either. find a way to have fellowship.
    David

  • #11684 Reply

    Patricia Conroy

    I find it hard to take issue with my husbands out bursts..He didnt ask for any of this. I feel hes entitled to his anger but he doesnt realize how hurtful he can be. Most days he deals well with his disability. But it doesnt take much to set him off then theres hell to pay. His physical needs are pretty easy to meet..Wish there was something more I could do to help when he lets it get to him.

    • #11709 Reply

      David Waterman
      Participant

      Patricia,
      Without doubt you are dealing with a near impossible situation. But your last response only amplifies your need for support. I feel for your husband. He is probably frustrated and beyond minor depression. But that is what will be your greatest enemy too. DEPRESSION and low self esteem. People who are depressed especially when they are feeling trapped tend to be very negative in their view of life. It is natural. Losing a daughter, and not having the normal space to grieve would be incredibly difficult. Your husband’s blindness would only increase his frustration and your burden. I have sometime found music to be a great way to keep things calm and on a more cheerful way in the home. But if you don’t get some help and some rest you will burn out. Actually it sounds like you are running on only willpower now with no reserves.
      I would urge you to seek out counselling. I am a dedicated believing Christian. So for me I can access a shoulder to lean on in a number of churches. But if you cannot connect with a good church go online and find a caregivers support group if you can. There is a lot of people out there that have experienced the same things and knowing you are not alone is a huge plus for you. I am going to pray for you.
      David

  • #11702 Reply

    David Waterman
    Participant

    Patricia,
    I was just in that situation yesterday and I found over the years that one thing has helped me cope with the outbursts.
    I was in a hospital for treatment after a very serious construction accident, and the nurse said something after I had gone through a very painful time in treatment of my wounds. She said a lot of time the outburst from a patient who is being treated is just the pain talking. They do not mean to hurt the person closest to them, but they do feel safe to vent because they know they are cared about as well as cared for.
    At the same time, the patient is not entitled to verbally abuse and destroy the people closest to them. Simply because one hurt does not justify another hurt. Just as we teach people in drug and alcohol rehab treatment, your wound does not give you the right to hurt and wound others we also learn the invalid is not entitled to hurting others.
    One time I was a caregiver to a Korean war vet who could blister a person with heated and angry outbursts causing many caregivers to walk away. His priest came to visit one day and having compassion on the caregivers recorded the patients’ outbursts on a little cassette recorder. He then came a few days later and sat down with the patient and told him he needed his advice on how to handle a man who at times appeared to be ungrateful for the care given to the man. The vet assured his priest that he would gladly listen and give the priest advice for the situation not realizing he was the man in the recording. The priest pushed the play button and the vet slowly began to tear up and then to cry. We all received apologies and he changed a lot after that meeting with the priest.
    My point is that most invalids and patients have no idea how they sound and how they are perceived by others around them and providing care.
    I am blessed as my wife does realize she is going to far with words and she will apologize profusely after she calms down. I understand her because I have survived three major accidents with injuries and I was clinically dead one time from the severity of the accident having to be revived. I understand pain, but I also know that when I went through therapy and counselling I found that counselors refused to give me permission to shred anyone verbally. Frankly we are all very good at it if we want to be.
    I would suggest that something might be done in the way of counselling and or get him occupied in something to take his mind off the pain. My wife is multi talented and an artist so she sometimes will immerse herself in artwork. But there are times she can’t due to physical issues, and then she will either vent or she will try doing something like watching a favorite movie or singing and music as she is a musician as well. Look for something your spouse could do before and try to get them involved. If that fails remember one thing, You will not stand forever if you don’t have support. So get some time for yourself. Do not let yourself be robbed of that personal time. Your peace of mind and sanity depend on it. And hang in there.
    My wife and her family dislike the term caregiver. But I am here to tell you that that is the greatest love. My ex wife walked out when I had my crippling accident. She said she didn’t marry me to watch me die. She picked up the kids and things she wanted and left while I was in the hospital and unable to move. The fact that you stay and are caring for your spouse fulfills a wedding vow and proves your love. You may not realize it, but that is huge for the person that is unable to care for themselves. And often the invalid is embarrassed and ashamed and grieving for the loss of mobility. So taking care of your own emotional and mental health is essential so that you can show the right kind of love and care for the loved one.
    David

  • #22100 Reply

    J

    Blessings to all of you. For me not a spouse but only child of two elderly parents who refuse outside help. My spouse travels as part of his business which we invested all we have and is starting up well, but he must travel. I have no extended family. Parents never belonged to organizations or churches and always kept to themselves. Our physician had independent psychologists evaluate them and much to our shock found them capable of their own decisions. I need to work financially or we will lose everything. Marriage is crumbling under the stress and I am at total burnout. My only escape is my work. My health in serious decline. Need surgery and cannot go for it due to no help for them. They have no money nor do we for home health or assisted living. They do not qualify for Medicaid being slightly over state limit. I have tried to talk here but instead got some hurtful posts that I am not being a “good person” when I explain I cannot do this by myself much longer. I honestly can’t.

    • #22554 Reply

      David Waterman
      Participant

      J,
      We often encounter caregivers caring for someone with either Dementia or Alzheimers disease. I think the biggest issue is that the caregiver can never really relax the vigil and even stop watching for a moment. It takes so mcuh out of the caregiver. One huge enemy is feeling like you have failed because you don’t do everything that is needed for the patient. We all go through that. I often say that Caregivers even when they don’t appear loving to the world are motivated by a higher calling and love that the average person. I wrote an article and it was posted on my page here at Caregiverspace titled Walk Awhile in my Shoes. It is the most recent article in my series. I found that I was being constantly criticized for what people thought I was doing wrong. There are always people like that. And unfortunately it is not our enemies in life that wound us deeply, but family and friends..I hope that you can find a place of peace in your heart in spite of the critics and people who put you down. They are not there and there is no way they can know what you are feeling. I found that many of us won’t take care of ourselves for fear of failing our family member patient. But I have learned that we cannot take care of anyone else if we do not maintain our own health both physical and mental. Keep that in mind. Do your best and remember that when it is all said and done, the patient is part of the situation too. You cannot beat yourself up for what the patient decides to do or does without your consent. You cannot control their actions, only your own. Don’t beat yourself up and don’t stand by and allow people to criticize your for what someone else has decided in their own heart to do. And there is a time to let go of the total caregiving task and allow yourself a rest from it so that you can first of all be family. Sometimes the most loving thing we can do is put someone in a facility so that we are able to be family again instead of nurse and caregiver only. It is hard to multitask across the line between physical comfort and care, and emotional and spiritual relationship and family. No one can do this forever without a rest and respite from time to time. So step out and take a break from time to time. That might mean finding a person to fill in. I learned one thing while my wife was going through the worse of her health problems. I would be sitting in a hospital waiting room and find that iI started talking with someone nearby who would also be waiting for their family member, that often that person felt very alone and was wondering if anyone else was dealing with the same issues. So above all else, stay in contact with good friends and people of like mind. When you are standing alone the stress really increases. Stay in contact with this group. Caregivers has many members who know what you are feeling almost instinctively. I will keep you in prayer.

  • #22434 Reply

    Milehilady

    J…..I have no words. You are in a very tough spot in regards to your parents. I too am an only child. I am very lucky that my daughter is right here living close by, and she has pitched in to help through some very tough times during the last 10 years. You might end up having to practice some “tough love” with your parents just to save your own sanity, marriage, and financial wellness. I wish you all the best, and send big virtual hugs. I ended up having to give up my career 8 years ago because my father would not agree to send my mom to a skilled nursing facility for rehab after repeated bouts of C Diff, and a stroke.
    We lost him to cancer 2 years ago and mom has been living with me since then. She has dementia, and it’s growing worse (of course). I have put her into a facility for a month’s respite stay because the stress was killing me. I’m planning on bringing her home next week, God help me. If her behaviors continue, I’m afraid we will have to sell everything (a ranch and lots of water rights) to pay for her care because I just can’t survive another two years like the last two have been. I’m hoping her stay has reset her brain, and she will be easier to live with, but I’m honestly dreading bringing her back. In the best of times we clashed and butted heads…..dementia has made it that much worse.
    Good luck to you……and all of us.

    • #22562 Reply

      David Waterman
      Participant

      Milhilady,
      My hear breaks for you. Having to sacrifice it all for the sake of covering expenses. People will say it is only money and not as important as people, and or they will say we need to love people more than property and possessions, but in the heart of every caregiver is the fear that there won’t be enough. For us the question was settled a few years ago. I now know there is not enough. We improvise and we sell off unneeded items and I pick up jobs on the side that don’t strain my own back problems and we find ourselves as we are involved in helping other disabled people being overwhelmed at times with the shear weight of debt that is always there hanging over every situation. And sometimews there is that question in our heart and mind that makes us feel guilty for even thinking it, but the question remains, ‘What about me?’ What will I do if I sacrifice all and then I end needing care? The answer is we will survive because we are surviors when every thing is said and done. I have had to exercise tough love a few times. When the patient just does something that I know is harmful to them, I have to step in and firmly say no. It is for their good and our peace of mind that I do this. Thus it ministers to both of us and keeps us both healthier. I have dealt with a lot of smokers and drinkers who are severely disabled and those are obviously self destructive habits, but tough love also extends to making the hard decisions and setting boundaries for everyones mental and physical health. I liked your answer to J in that regard. It is so necessary to have those boundaries without taking on guilt for setting the boundaries. Hope for your sakes that another way can be found to care for your loved ones. It will give you a feeling of being more secure in your own lives if everything does not end being sacrificed and you find yourself at the mercy of landlords and new mortgages late in life. Wish I could do more, but I too find that I look around and see the property and the resources continueing to dwindle. Do stay in touch with us.
      David

  • #25217 Reply

    Lori_Fay
    Participant

    My caregiving started many many years ago with my mom. We moved her into a place next to us so she could be closer to us. It innocently started with groceries, appointments but then quickly developed into caregiving. I would get calls in the middle of the night because she was scared and would want me to sit with her. She was disabled and had congestive heart failure. It quickly went into caring for her, her property and basically everything. I cleaned house gave instructions to others. At the time I was a full-time foster home for teen girls, so I also had my plate pretty full. When she passed in October of 2008 I was devastated. But 6 months later my husband was diagnosed with Spleenic lymphoma type B. His spleen had grown to a size of 11.5 inches long and weighed 22 lbs. Obviously we chose to have it removed and he completed 6 rounds of chemo. November 1, 2010 he had his last chemo and was told his cancer was in remission. He felt great. He decided he wanted to return to work and did so. But 6 months later he came home and was so swollen he looked like the Stay Puffed Marshmallow man. At first they told us that he had COPD, but none of the treatments worked. Then next time he came home on March 14, 2012 I picked him up from the airport and drove him directly to the hospital. After days and days of testing they told us that Garry had Pulmonary Hypertension with right side heart failure. He was given a time of 2 to 4 months to live. After getting out of the hospital we had all the oxygen tanks and medication in our home. Salt reduced diet and also his liquid intake had to be monitored. But the medication he was taking by mouth was working and with positive thoughts and beliefs we made to 2 years past the initial diagnoses. But sadly this past year his health started to fail once again. He had to have a infusion line inserted into his chest which delivered medication 24/7. It all had to be mixed by us so my home turned into a huge pharmacy with tons of training on PH and infusions. Sadly the medications didn’t work that well for him and 6 months later a pleurx was inserted into his stomach to help drain the fluids as they build up. He is now palliative care at home. We will fight to the bitter end to find something else hopefully. But the right sided heart failure and PH will be the deciding factor whether he makes it or not. His weight is plummetting everytime they drain the fluid and I watch helplessly as he loses more and more weight. I’ve talked to doctors, dieticians and nurses but always get the same reply. Feed him lots, add protein powders, fattening foods but none seem to really help. He is still brilliant and has a great sense of humour but I see it in his eyes. We are gonna lose this battle and there is nothing I can do to fix it. 🙁 My mind and body are exhausted as life doesn’t stop for us and we need to push on. God Bless all of you who are caregiving in some way, shape or form. It is the toughest job you ever have but it is the most important. But after all these years I have to ask the question. What is normal anymore?????

  • #25261 Reply

    Adrienne Gruberg
    Participant

    Lori – You and your husband have gone through a lot together, and having been through my own ordeal with my husband (who subsequently passed four years ago), I know that having a relationship like yours, one where there’s mutual respect and what sounds like much love, make life worthwhile – in a very sad but important way. I wouldn’t have had it any other way and I know that he would have been there for me too. Sure there are times when there is not even a new normal because it keeps morphing into a new problem almost every day. All I can say is love each other, cherish the time you have together and keep coming back to the site to share your feelings and find other caregivers who will understand what you’re going through.
    Hugs – Adrienne

  • #25263 Reply

    Lori_Fay
    Participant

    I’m so sorry for your loss Adrienne. And thank you for your response.

    Lori

  • #45985 Reply

    Tina

    My husband is a disabled vet. A paraplegic, 50, and is mentally stable. He can be very stubborn and quite mean at times. That in itself can make my ability to assist him difficult, to say the least. He needs help getting in and out of bed, in and out of the shower, and getting dressed. I work full-time and through the Advantage Care program, he has a bath aide that comes to assist him Monday-Friday.

    One of our major problems is his need to become friends with the bath aides because he fears losing their help. They in turn, take advantage of him and often do not complete their job duties. I come home from work expecting a,b,& c to be completed and most times only a is done. It is very frustrating for me but my husband and I can never come to agreement about it.

    We have no intimacy at all with one another which only adds to my frustration. I’ve thought about leaving several times but always end up staying. Frankly I’m at the end of my rope and don’t know what to do. I do not have any acquaintances that can relate to my situation. Did I mention how tired I am?

  • #58013 Reply

    JeannineDay

    Why don’t you try the independent living communities? Such communities are made up of single-family homes, apartments, or a combination of both, usually in a private and often age-restricted area. Independent living NJ provides them the environment they needed. With caregivers and among their type of people he may feel comfortable and relaxed.

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