Caregiving for a spouse and am on rollercoaster of emotions.

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I know I should speak to a counselor or therapist, but in simple terms--I don't have time. I'm a caregiver for my husband and still work full time. He is in a wheelchair, has primary progressive MS and is 99% unable to help me around the house and 100% unable to help outside the home as he can't drive. When he was diagnosed with MS, he had already had it for probably 15 years (no one knows) because he was MISdiagnosed for many years. He was finally diagnosed with this devil disease in 2011, was using a walker and in a short, turbulent 2 years, ended up unable to walk (in a wheelchair). Not much of a chance for me to get used to caregiving and certainly not enough time for him to adjust to the pain he is subjected to. Also has peripheral neuropathy. I am the only one who can 'do' anything: shop for everything and anything needed whether its g roceries, hardware, gifts, cards, tools, car repairs, home repairs....well, everything. Then, there are the meals to prep and cleanup, housecleaning, laundry, bills to pay, budgeting, making appointments, taking him to the appointments, keeping track of the paperwork...oh, the list goes on and on. I know I'm not alone, but it is overwhelming. I work full time so these all other things are done in the evenings or on the weekends. He has a habit of making me feel guilty because I'm not there with him. He calls when I'm out doing errands, etc. We don't have a marriage any more, so I'm sad about that. At the same time, I'm angry, mostly at the situation I'm immersed in, but a lot of times, I'm angry with him. He rarely listens when I try to include him in conversations (probably his condition and/or meds), so I have no one to talk to when it's the two of us alone at home. He yells and cusses if things don't go his way (due to the MS and loss of dexterity, he often drops things or has difficulty getting dressed). Rather than call me for help, he yells and cusses. Loud enough that a neighbor could hear the noise. I've tried to reason with him about self-control, but it doesn't help. So, I end up angry. It's like having a grown child. I need to get away by myself, but feel guilty that he can't do the same. He misses his freedom and the life he is living breaks my heart. So how can I go away to visit family and/or friends, when he can't do the same? Oh, we could go someplace together, but I want to get away from caregiving, NOT bring it with me.


It's called respite care. Talk to his MD about getting him to respite care. Also ask him about MS support groups in your area, and join one.
Of course you wouldn't be getting away if your brought your husband! Like you said, you'd just have to be a caregiver in a strange setting which would be much harder.

I'm so sorry that the MS has robbed you of your marriage and your life and your free time. And I'm sorry for your husband that he has to deal with it all too. I would imagine that it would feel like you're talking care of a big child.

I can't imagine how you work full-time and take care of your husband too. Do you have outside help that comes in while you're at work? If not, is that an alternative? It would lighten your load considerably if you could come home from work and have the house halfway decent and some laundry down as well as your husband cared for and fed.

And you do need some respite badly. Assisted living facilities offer respite care (some of them). But from what you wrote your husband would hit the roof if he had to stay in respite care. But you know what? Too damn bad. Wouldn't he get out of this situation for a while if he could? Aren't you allowed to feel the same way?

If you're not comfortable with Assisted Living respite then I hope you look into hiring a caregiver to help you out. Most agencies require a deposit and a 2-hour minimum. You can pick any time you want, whatever suits your lifestyle and your husband's lifestyle. And maybe if you could get away even if it's just to a movie or lunch with a friend it will give you the strength to do everything else you need to do.

I hope you come back and let us know how you're doing.
I too am a caregiver to my husband of 38 years. My husband has many of the characteristics your husband does, though he is not so out of control yet. He has a degenerative muscular disease and a feeding tube that leads into his stomach and not to mention the breathing treatments. I too am on an emotional ride most everyday. Unlike your husband who is in a wheel chair, my husband is quite capable of walking with a walker. He choses to sit in his chair all day and watch television. I tried taking him on a 7 hour road trip to visit his mom and sister and that proved to be a huge mistake. He spent one day in our hotel room and one day he thought he was dying so I had to find a VA Clinic, as no medical clinic would accept him because he was out of state. On our last day he threw an absolute fit in front of his family. You are right it is just like having a child all over again. I know what you mean about being lonely, I can be sitting in the same room with him and feel like there is no one there. Because of his muscular disease he, I can only make out a few words of what he is saying. I do get out of the house, even if it's to go to the library or grocery store. I am how ever looking into a program through the VA called Aid and Attendance to see about getting some one come in and check in on him when I go on a weeks vacation. I cannot take him with me because of all the supplies necessary to get him through a week. That would be impossible to do. There has to be some organization there among your community that can hook you up with some one who could help out so that you could get out more. My son lives near by and he would be glad to check in on his dad, how ever he would not assist him in and out of the shower or change the gauze around his feeding tube. I am thankful my husband does his feeding and his meds by himself for now, but I know it will not be too far off in the future when that will change. I have talked to my husband and explained to him that when he gets to be too much for me to handle we will have to look into a nursing home for him. It angers me too no end that he does not try to strengthen his life more by getting up and walking around some or he was taught exercises he could be doing in his chair not to mention he could open up his lungs by doing breathing exercises, but no he choses not to. So I truly feel for what it is you are going through it sounds so much like my situation. I do not know how you do all that you do and still work full time. For awhile I worked part time when we were living with our son and his family, but I would come home only to hear about all the shouting that went on when I was not there. Then my husband got his disability, we were able to rent a house near our son. Three long years of fighting with the VA and he now gets disability through them and all his needs are taken care of. I do not work now which is not helping build my SSI. So best you can do is try to do some research and find local group for meetings and try to find a way to be by yourself. During nicer weather I even go out on the back porch and sit or under the trees just to get away from the constant noise of the television that is on from morning to night. Good luck and there are some nice people out there, before I found this web site I had no one to compare notes to and it makes a big difference just to be able to type it and get it out there. Huge hugs being sent to you. Take care of yourself first.

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