Caring for a paralyzed spouse. Any advice?

My husband is 90% paralyzed with MS. It is hard to learn to take care of yourself first. I had to learn and at first I felt guilty. I went to a therapist once a week as there wasn't a much of a support group here. Being in a support group with other caretakers really helps and you don't feel so alone in your situation. None of us don't want to feel like being a burden, you are thinking for her and that makes it harder on you. My husband is very understanding kind of person. I told him it helps me to be with other people in the same situation. He didn't really respond either way so I left it that way. If you don't take care of your needs you won't be able to care for hers. Wishing you the best.

I was considering what you were saying about your wife's feelings when you know you need to do something to care for yourself while caring for her. You do no say if or how much help you are getting with her care. Does she like the aides? Has she been paralyzed for some time or is this fairly new? Have you ever gone into any counseling or has she since she became incapacitated? Do you remember or did you know that Dana Reeves was not at home when Christopher Reeves passed away. Yet the world remembers them as devoted to each other, particularly her to him throughout his illness and health challenges. I have no idea your ages, but these two beautiful, healthy people were both struck down in the prime of their lives. (She died a year after he did from lung cancer).
Every marriage is different. In mine, my husband and I are very open and honest with each other with all the kindness we can figure out to employ when the subjects get harder. We have both been married before and this marriage is now 13 years old, although we met 30 years ago. One of the big issues for both of us before, in our first marriages, was wanting honesty from our spouses. My husband once, years ago, wrote me a love letter saying that "I prefer hard honesty to soft truth". He says he meant it then and still means it now, so we deal with everything understanding that about the other. Your wife I would guess would prefer you take care of your needs too and if you treat her lovingly when you return, bring her some flowers, put on nice music, ask her to do something for YOU sometimes, even the smallest thing, whatever she is capable of and NOT treat her like a patient but a woman I think she'd appreciate all of it.
I recall being with my in laws before my father in law died, in 2006. He was deaf from birth and had always had a speech impediment, which was not helped by a stroke in his 60's (died at 88). He had some paralysis on one side, dragged his feet and really could barely walk. He did have his need to be a man though and hold onto self respect. Once at a restaurant my mother in law, who I loved but was a very forceful woman always, grabbed the back of his pants and hiked them up while he walked in an effort to 'help' him move forward. It wasn't her intent, but it was the WAY she did it that made me feel humiliation for him. My husband and I noticed it and both talked later about how no matter how infirm either of us gets, we will 'hold each other's hand' and never 'handle' the other in public particularly that doesn't demonstrate that we are a couple in love with each other. So I guess I am saying, to some extent, allow others to do the real 'heavy' lifting sometimes, not just to spare yourself but to spare your couplehood. You will think of each other differently if no matter what you remember that you are each other's sweethearts. TELL HER you need some relief so you can be there more for her and more patient and present when you are together. Tell her you NEED her. Just her, in your presence.
I would also recommend Stephen Ministry caregivers, even if you don't belong to a church. Find one that supports this ministry and they can explain it to you. You do not have to be a certain denomination. Anything you say is confidential and they have resources available to guide you in some areas to lighten your load. You and you wife might both like to have one. Then you aren't talking to someone who is your 'friend'. They are there just for you and none of it leaves the conversations you have together.
Since you are a man, I just want to tell you that I know men tend to hold it in. Be strong. You need assistance, emotionally, spiritually, physically. Let it in.

Thanks for all your replies and I thought I'd try to answer a few:
My wifes accident was 7 years ago and we have been together for over 20 years. She is classified as a quad with a C7 injury. She is paralyzed from the chest down and sleeps on a hospital grade air mattress bed. Even though her hand functions are limited, she can do a lot. Not having that core strength really makes things more challenging but we are hoping she may be able to drive one day. She has a lot of chronic pain which many specialists can't figure out so they prescribe pain pills but she hates how they make her not feel like herself. We are not able to do much outside activities due to this pain or the medicine effects and I usually need to lay her down every 3-4 hours. She's never been much of a communicator about her feelings which is why counseling never worked but how she handles not being deeply depressed is beyond me. Her strength and courage is nothing short of amazing and will give anyone a new perspective on what having a bad day is about.
In response to Daughteronduty post: I most certainly agree with my marriage vows for "better or worse" and am sorry I gave the impression I don't. But with all due respect, even if we married after the accident, I can assure you there is no way to know everything the future brings with this level of a spinal cord injury. There has been many changes in even the last 7 years. This injury has destroyed our future plans we were making and took away the intimacy all marriages need. I can not stop you from thinking that only means sex but trust me when I say there are many simple things people take for granted that couples do together that bond and strengthen the relationship. My biggest feeling I have now is empathy and that alone would prevent me from ever leaving. There are not other things to put in place as the simple truth is that without me she goes into a home. Besides that, I think the line for people who are "stressed out and want a new life" is too long a wait.
Thank you all for sharing and the help.

As replied by ""Daughter on duty, I also am asking how ad when did your spouse become disabled, and how severe is her disability ? My wife is disabled after a car accident, which left her paralized from the waist down( correct term is Paraplegic). At home I help with hygiene and other difficult tasks. She drives her self in her van equipped with adaptive hand controls to physical therapy at a special facility for the disabled at a local university. Since joining she made many friends there, and also joined some organizations of the disabled community. My wife takes care of her mom who is 88 y/o, has Alzheimer's, lives at home. My wife shops for her, handles her financial affairs and visits her at least once a week, and they talk daily. We travel, go to shows, restaurants, visit with friends, etc'. At times I feel I need some space and freedom, and at times my wife gets depressed about her paralyses, gets into a self pity mode, since she was a professional folk dancer pre accident. When she sees people dance professionally, she cries. Immediately after the accident(22 years ago), we started seeing a psychologist, which helped a great deal. We still see her today as needed. So as some one else wrote, support groups and professional help is definitely a great help. Good luck, and do not give up, you are not alone.

I have mild dementia, and my husband is my caregiver. We talked long ago about what might happen in the future as I am also disabled from a number of medical conditions. We have worked together to make all of our end of life plans, talking honestly with each other. We both feel much better now that all of that is done. I am 76 and my husband is 80. We will have been married for 54 years in July. As I said, I have mild dementia now, but no one knows if it will get worse. I am not able to do a lot of physical things, but I can take care of most of my personal needs. I am able to do the checking account, and other business affairs. My mind is pretty good yet, but I forget a lot. I am also very clumsy, but I am good on my computer.
Would your wife be able to do things on a computer or tablet? Download books from the internet. Some of them are even free. She could also play free games on a tablet, including crossword puzzles and table puzzles. Just some ideas for you to talk about with your wife might bring a closeness to talk about more serious things. We do have some close friends and relatives that we are both able to sound off to, and God is very available in our lives. Just some ideas for you as it sounds like our situations might be similar.
Good luck, and stay in touch.

What you are doing is very difficult, and I am sure your wife appreciates it already, no matter how cheerful you try to be. If you think a support group would help you then I urge you to try it. It's too hard to take care of a loved one unless you take care of yourself as well. If your health suffered from stress, isolation and depression to the point where you couldn't function well, then both of you would need care. And if the group allows you to come home feeling lighter and less isolated, then both of you will benefit.

My mother helped her minister who was paralyzed and his wife one day a week and she did activities like singing with him which he loved amazing grace and he could kick the ball to her and back. Through much work , he was able to get strong enough to be able to dance with his wife. This special task made all the difference in their marriage to have this dance. Find something you and your wife can do that is special between you. It will restore the bond you had and he reason you loved her to begin with.

I completely understand your situation. My husband is paralyzed of his whole left side due to a stroke in 2007. You are right most people just want the standard, "we are fine" answer. If you dared to go into what a day is emotionally and physically, I don't know if they would think we are exaggerating. It can get frustrating, tiring physically and emotionally and at times lonely....but, it is rewarding and fulfilling and yup weary too.
Find someone to talk to, friend, pastor, sibling, sometimes it really helps to vent. Take a little time for you every day, even if it is to just sit and read with a glass of wine. Talk to your doctor about some antidepressant/anxiety meds, it helped me a lot.
Take care.

I am blogging a similar situation about my friend and her husband. AgingCare deletes my link when I include it, but the blog is on Word Press, "What to Do about Mama?" In the 20+ episodes of "Katie's Story" I chronicle how Katie was able to leave the nursing facility to live at home with a 24-hour care provider, in addition to her husband. Katie (at age 64) became paralyzed after a stroke caused TBI during surgery for a brain aneurism. I think you will be interested to see how this family has been able to handle the situation with the assistance of a state program. Aside from this, I recommend communicating honestly with the people you have mentioned. Friends: Explain to them what you have shared with these readers. Let them know what you need and let them choose how they can help. Your spouse: Remember that you are a team and let her help, if she can, to formulate solutions to problems. I anticipate that she will understand your need to attend a support group, and may even suggest it herself. This empowers her. You could even join a (problem-specific) support group WITH your wife if one is available, and if this is possible for your wife to do. There's a story in my book (Keith's Story) of one couple who did just this when the wife became ill with Acute Lymphocytic Leukemia. She is in remission, and he remains a strong support group advocate.
Barbara G. Matthews

You don't say how or when your wife became paralysed but presumably this was not always the case, otherwise you would have known what your own life was going to be like when you married. Given that this paralysis is the result of some accident or illness, your wife will already be suffering from the bereavement she feels having lost her mobility, so she will already feel like a burden. My mum is 88 and has lost her mobility and even though she also has dementia and still thinks she can get up and walk around, her sense of loss when she remembers that she can't and has to be hoisted on and off the commode, and in and out of bed, and then yanked by me in and out of the car if we take her out is absolutely profound. So your wife, despite any appearances to the contrary will be very sad deep down. You have to make a big decision here - clearly you are struggling with the idea that you are in some way imprisoned for the rest of your life - and I empathise with you as I feel this with my own mum but my mum is old as I say and if you are still young (obviously still going out to work) you have a lot longer to live with this situation than I do. If you don't think you can do this you have to put other structures in place to reduce her suffering, since I guess when you married you said those words 'for better or for worse'. In this respect, you should check out activities for the disabled that whoever cares for her during the day can take her to. Craft sessions, film clubs, book clubs, etc., You need to widen her own circle of friends and activities because by doing this you increase the number of people you might be able to call upon if you work late or if you want to go out yourself, and you also give her a sense of achievement and it may tire her out so she is not so reliant upon your company/mental stimulation. You have to take care of yourself and your own needs so that you can continue to take care of her but you must be honest - are you just stressed or do you want a new life?

As the parent of a child with a disability, I can only share my challenges with people who are parents of children with disabilities. In the beginning it was essential to my mental health, so I found the time to go to a monthly support group for parents of children with the same disability as my son. These folks were my source of strength, understanding and valuable resources. You will be helping both you and your spouse by widening your social circle to others who find themselves in a similar situation. I have been caring for my son for 22 years and some of these folks are still friends that I willingly help out and they still do the same for me. (I am on this forum because I also care for my 89 year old dad and wish I had a local support group for that as well.)

This seems too overwhelming for one person to deal with. If you don't take care of yourself first or else you won't be able to take care of your wife.

Following, sending 💗

Your post reminds me that couples need to discuss this issue, before it comes to one caring for the other.

Truthfully, no one should expect you to care for someone at the detriment of your own life. It effects your health. What happens if she outlives you, which is quite possible?

I know that I just responded some on your wall, but I just thought of something. Does your wife have any siblings or cousins or someone who would be really good for her to have more contact with her in the present situation? That you share some of her need for emotional support around.

Keep in touch.

There are some hear who are taking care of a spouse.

Here's a link to threads and articles on this site about taking care of a spouse. I hope one of them or more will be helpful.

https://www.agingcare.com/search.aspx?searchterm=caring+for+spouse

I would imagine she already feels like she's a burden and is likely trying to keep up a good front for you like it sounds you are doing for her. You need to find someone like here or a counselor, or a pastor to detox the stress with so that you can talk with her without unloading it all on her. Friends really aren't good for intense unloading on a constant basis for they can only carry so much. You need and your wife needs for you to take care of you to be the best for her that you can be. Get some help for your internal stress, but don't shut each other out trying to be strong for each other. Can you take any family leave time from work to help get unstressed some?