I've been in a wheelchair for over two years because of radiation damage to my spinal chord. We've sold our house and are using the proceeds to live on. My condition has deteriorated and I require more care from my husband. I need help getting into and out of the bed, using the toilet, for example. Lately I've been unable to shower for fear of falling, so personal hygiene is an issue though I do the best I can to keep myself clean. I don't tell anyone about this because it is hard to admit, even to myself.
I've had increasing difficulty getting into and out of the car to visit my doctor so we are buying an expensive, wheelchair-accommodating van and using up a chunk of our funds. My husband and I are in our mid-70's and he said we'd manage okay financially until our 90's if we bought the van, so we did.
We have a few hours of respite care from our county agency on aging. My husband gets a break.
I know I have many things to feel grateful for, but I feel like a burden. My husband is still active and I am not. If I wasn't around, he'd be living a different and perhaps richer life. I worry about my future care, the cost and the impact emotionally both on my husband and myself.
I am trying really hard to live in the moment, but sometimes I'm overwhelmed with the challenges I face.
Any advice?
When you can, get someone to be with you while he goes out and does something that he likes to do. That is, if he will do that. Some people won't. Also, as someone else has already stated here, he loves you very much it sounds like and he loves taking care of you. Granted, sometimes he may need to get out and when you see that happening, encourage him to get out. One thing you can do though is keep YOUR spirits up. Be thankful and tell him so. I had one lady mentioned earlier, that just ordered he husband around all day, she would not allow us to play our trumpets together or me play the piano, which he loved, because it disturbed her television programs! In the months I was her caregiver, she never encouraged him in any form or told him he needed to "get out" and do something for himself. It was ALWAYS about her. He did not know how to cook. That was apparent but she expected him to and he did the best he could and then she would complain. He had been doing this for 6 years. In other words, she was a "sour puss". Just do NOT be that way. It was awful to watch how she treated her husband. We were live in caregivers and she would "need" something from him like every 15 minutes or even less. Even when it was obvious he needed to take a nap because he kept falling asleep in his chair, (she would awaken him at 3 in the morning to do something) she would not allow it BUT he allowed this to happen. He always did what she wanted.
I assume you've been married for a long, long time, and perhaps your days are numbered... who knows, right???
The best gift you could give your husband is to let him love on you 110% always and forever!
Obviously, he's your partner in your healthcare. Count your blessing and thank God you have him. I'm sure he thanks God he has you!
Don't shut him out because of your illness. Don't let him have regrets after your gone. Let him help you in the shower. Let him change your diapers. Let him cook your meals, and let him live a life of love and gratitude for you!
Sometimes it's better if a spouse doesn't do everything like changing the diapers and bathing.
Some things are better left to hired help. It's better for the couple.
You are rare indeed, most care receivers almost act entitled and sometimes are not so nice as if taking out their grief on their lived ones, including their Caregivers. Many do not allow respite, do not give them a break and definitely use manipulation to keep them waiting on them until exhaustion, creating a negative spirit.
You appear to be humble knowing that your spouse is doing what he can, and believe me your attitude of gratitude goes a long way.
Be sure you ate making sure you are using your Medicare benefits, and you don't have to purchase a brand new wheelchair accessible van, many of these products are best purchased used since they maintain value and if you speak with the companies they will tell you that many veterans start out with brand new, state of art vans, and after rehab they desire a truck or car that will be made for their disability so their van was possibly used a year or less. Must look at speaking with Agencies and National organizations for your disability which will help you with many suggestions and possibly tell you what you do not have to use out of pocket funds. For example, spinal cord problems with specific diagnoses would have National Organizations to assist . [United Spinal Association has a comprehensive Resource Center]; might use this and gain knowledge that certain diagnoses present more assistance but you must be registered ; there is even a Facebook for SCI for United Spinal for support. In my many years of working with Caregivers, I can say you might be the first Care Receiver to express these thoughts so openly. I usually hear from the Caregivers who become very frustrated because they are doing what they can and it is not enough, adequate, they feel if they cannot, then guilt, cannot get time off, alone, lonely, feel stuck, angry, then guilty and all the while some Care Receivers take full advantage of these emotions and just abuse them emotionally almost daring them to walk away from them. Psychological terrorism is real so please do not think having a disability render some people pitiful and needy. Some people are more emboldened when they got you serving them. I have had many to tell their wives from their chairs, :you get nothing if I die". So, the fact that you see what your spouse is doing means so much to me. Thanks for being you and Thank your spouse.
Well said. You truly understand what the world of caregiving is like.
My father was devoted to my mother.and never questioned how their lives had been altered by my mother's condition. They just learned to deal with circumstances as they occurred.
They also used a wheelchair van which opened up many activities compared to the struggle of getting in and out of a car. Definitely worth the money. Enjoy the greater range it gives you.
My mother felt sincere and constant gratitude for her husband's love and care through the years. People who knew them greatly admired my father's care and support for my mother. When someone said he was a saint for his care of his wife,, he would say, "It's a pleasure to take care of an angel.,"
My mother participated in social and church activities in ways she could. She would be the "phone person" for groups and committees. Her book group met at our house, friends came to our house for lunch and so on.
My parents' story may not prevent you from sometimes feeling like you are a burden, but I want to share it. The personal lessons I learned growing up in this family situation were to figure out alternative ways of doing every day tasks, and concentrating on what one CAN still do, not on what one cannot do.
You obviously have a great husband and I am sure that he would appreciate your efforts to shower on a regular basis. You have received a lot of great recommendations for getting this done and I hope for both your sakes that you can get the help you need.
I agree with others who say to inquire if is possible to receive more help with showering. Falls are frightening.
Of course, you have ‘down’ days. That is completely normal. I hear gratitude and appreciation in your message too. You don’t sound totally depressed.
You didn’t mention that your husband is complaining about this situation. So, I will assume that he doesn’t look at you as a burden. Speak to him about it, if you are concerned. Take him at his word if he says that he wants things to remain as they are. If he says that he is tired and needs to rest more or wants to be more active, discuss hiring someone for a few hours.
Are you content with things as they are? Do you fear that your care is taking it’s toll on him? Do you feel that he wishes to be more active in his life and you feel like you are standing in the way of that?
Wishing you and your husband all the best.
It sounds as if both of you have done your homework as far as your financial future.
If you don't have one, get a shower chair and a handheld shower head; or check into having a bath aid come in 1 or 2 times a week - it may be hard at first - when dad was on hospice he wasn't so sure about having a bath aide - but once he got use to it he enjoyed it and grew to adore the aide. Check with social services to see what other resources are available to you and your husband.
I pray that you and your husband are blessed with peace, grace, love and yes, joy. Enjoy each other and the simple things life has to offer.
Is your shower a walk-in shower? Is there a lip at the bottom preventing a wheelchair from going in and out? Are you able to stand at all, holding to a walker and grab bars?
This is my perspective. My mother has become my father's full-time caregiver. He is recovering very slowly from a few brain surgeries. My mum expects him to get a lot better, I am doubtful. I help my mum part-time so that she has some relief and some laughter.
I will only admit this here, but my father is a burden on me and my mum seems worn out most of the time. BUT PLEASE READ ON
Let me clarify why I feel this burden. He is not an easy man, never has been, and is prone to take out his anger and frustration on someone else. I have given up a lot of my life to help my mum with this, there is nothing I won't do for her. The burden comes from getting called names every single day, the few times he has hit me and pulled out my hair. That is what burden's me. Not the taking care, the cooking etc.. I am happy to do that. Appreciation goes a very long way.
I don't know what your relationship with your husband is like but I would guess it is a good one. You may not be as physically able as you once were but that makes you no less of the person he married. I suspect you spend a lot of time worrying about him and him about you. Tell him, your fears and let him reassure you. And then sit down together and think of little ways you can add happiness to your lives.
That didn't or doesn't mean that it's easy, but when you truly love someone, it makes the difficult times easier.
I would let your husband know that you're now needing help in the shower. If he feels up to it, let him help you. Otherwise he can hire an aide to come several days a week to help you in the shower. And you can use the extra large body wipes for the in-between times, along with the waterless shampoo caps.
Before my husband became bedridden, I had to help him in the shower, wash him, help him back out and dry him off. It was not easy, but I didn't mind helping the man I loved. I like to believe that had the tables been turned, he would have done the same for me.
None of us are guaranteed tomorrow, so please don't waste your time worrying about things that may never happen. Just enjoy each day the best you can, and be grateful that you have a husband who loves you so.
When my husband was in his 6 week dying process, before he became unconscious, he kept repeating 2 things to me. He said over and over, thank you, and I'm sorry. I understood the thank you part, as I'd been his caregiver for many years, but when I asked him what he was sorry for, and he really couldn't respond as his speech had been impaired since his stroke in 1996, I asked if he was sorry for everything he had put me through, and he said yes. I told him that he had nothing to be sorry about, that I loved him, and given a chance I would do it all over again.
I can only guess that your husband feels the same way. And if for some reason you leave this world before he does, I'm sure that (like me with my husband), he would give anything for just one more day to care for his beloved wife.
May God bless and keep you both.
Good tears though.
Sounds like you were both so blessed to have each other.
My husband of 45 years has terminal lung cancer. Is he a burden to me? Absolutely not! We don’t know how long we have together, so every day is a gift.
Are things more difficult? Sure. His short term memory is gone because of radiation to the brain. His balance is poor, so I am on high alert all the time for falling. I now help him by opening doors, which he used to do for me.
But I wouldn’t trade one moment for a day without him. We have become closer by sharing our love, fears, and feelings.
Tell him how you feel. He will tell you you’re not a burden. You’re the person he married and loves!
Practical advice: check with your area agency for aging to see if there is more assistance you can get. You should be able to get an aide to bathe you. You may be able to get transportation to medical appointments. See if they provide grocery shopping or Meals on Wheels. Anything that will help you and your husband.
Have u shared your thoughts with your husband?
Try really hard to give joy to him. Smile. Ask about his day. It may sound backwards, but giving what happiness you can will really make you happier, too.
But also share your concerns with him. Ask for help as you need it, and not just physically from him, but let him know you may need outside help. Yes, it is hard to do, but it will relieve a burden from both of you. From your description, he sounds like a good person and a good husband.
Wishing you well!
Life is full of challenges for each of us, some greater than others. With support and love, we face them and defeat them, one day at a time. I wish you the very best in doing that yourself, my friend. You sound like a strong person who's able to do just that!
Best of luck!
May of us don't get to have the life we wanted due to circumstances beyond our control, that's as true at 20 as it is now in your 70's.