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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?

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Don't borrow trouble, if your husband says he is OK then believe him.
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.
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seaglass5 Jul 2021
Sometimes all someone needs is a little kindness. I hope when you need it, someone is kind to you.
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I think you are the reason your husband has richness IN his life! While it's natural to worry about your future care and the costs & impacts of it on both of you, it sounds like your husband is on board to help you for the duration, which is wonderful. My husband is having some serious health issues for the past 2 years, and they will continue down the road, but I'm with him for the duration. He makes my life SO much better and any care I do for him comes from a desire to do so; we're in this together for the long haul, you know? I don't feel resentful and it doesn't sound like your husband feels that way either, thankfully.

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!
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seaglass5 Jul 2021
Thank you for your thoughtful reply. I really appreciate it.
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(hug) For myself, I would rather do less, and have less, WITH my husband than without. And he has expressed the same to me.

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!
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This brought tears to my eyes!
Have u shared your thoughts with your husband?
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I hope you reach out to your doctor and tell him/her how you are feeling. I suspect you are suffering from depression. I speak from personal experience. I know that hopeless, helpless, “I’m a burden” feeling.

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.
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You are sweet to worry about your husband, who sounds like a real stand up man. Most of us when we took our wedding vows, said for better or worse, in sickness and health, till death do us part, and meant it.
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.
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XenaJada Jul 2021
This made me CRY!
Good tears though.
Sounds like you were both so blessed to have each other.
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I would think you are probably not.
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.
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When u shower, do you use a shower chair. They have them where the seat is outside the tub and the seat scoots into the tub. There are handles that clip over the side. You can have bars put in the tub. A handheld shower head is great for bathing.
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I would explain to your husband you need help in the shower and if funds are available tell him you appreciate all he has done but would like to hire someone for a few hours a week to lighten the load on him. Full time caregiving is hard and maybe if you outsource some of the heavier load on him, the time spent doing those things can be filled with laughter. You are not a burden. Hugs to you
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seaglass5 Jul 2021
I have had many kind and thoughtful responses. Thank you to each of you for taking time to write. I have low days now and then and wrote during a low time. I imagine everyone has low days, caregivers and those they care for too.
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If you haven't already done so, research and educate yourself on every available aid that can make your daily tasks more manageable and give you a feeling of more independence. So many times, we have to find this information on our own.

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?
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Your husband has loved you for many years. What has he loved about you? Your smile, your interest in what he does, your gratitude for the many things he has done for you, your upbeat comments on what you have read or seen on TV, your smile in the morning when you wake – think back and make a long list. Then try to do more of them. Don’t focus on what you can’t do, it’s much harder for him to love you if you are always miserable. And you have much to cherish.
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MargaretMcKen Jul 2021
I didn’t put in the personal stuff, but this comment applies to me. As my back is deteriorating I can do less and less. Now my DH has to hang up sheets on the washing line because I can’t stretch that well, take heavy dishes from the stove to the table for me, accept that we won’t be doing the wonderful walks around here together, and on and on. He never complains, and he likes to help me. I try all the 'jokes' out on him before I post them to the jokes site, and he laughs every time. I really do my best to be positive like this. It may sound a bit like ‘What Katy Did’ (good to re-read), but in fact it is!
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Bless you. Share your concerns with your husband. Show gratitude for all he does for you and how much you appreciate his attention. As my mother always told me "Life isn't always fair".

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.
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You sound like a dear, loving and caring wife. I am quite sure that your husband is well aware of your love for him. He sounds like he loves you dearly.

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.
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I would recommend that you get assistance with hygiene. This is very challenging to live with and it was a deal breaker for me with my dad.

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.
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I'm sorry you are both going through this at such a young age. My mother is in a memory care facility and the shower is a walk-in shower with a portable seat, the shower has a long hose. Have you done things to make your apartment more livable (grab bars, shower seat, shower hose, etc.)? Discuss your situation with a local social worker who can explain your options. You might be eligible for more in-home health or financial aid (so that you can pay for more in-home help). The more you can do to give your husband a break, the better. Let your husband know how much you appreciate what he is doing.
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My mother was in a wheelchair for 47 years (due to a poorly administered medical procedure,) and my father did all her personal and nursing care throughout those years. My mother did sometimes feel like a burden and she always felt bad that she could not do some of the things for her children than a more able-bodied mother would have been able to do.

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.
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Sounds like your husband is very caring and loves you. He might even be thinking it could be him in the wheelchair and you would be taking care of him. I think most married couples are aware that they may be caregivers or may have to have caregiving themselves in the future. Maybe more respite for him or have help come in a couple times a week.
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You seem like such a loving person, I imagine he is lucky to have you - wheelchair or not. Caregiving can give people a great sense of purpose, on top of already loving someone very much, so you may find he prefers doing this for you than you going to a nursing home, for example. I care for my mother who has Alzheimers and while some days are harder than others, I'm so grateful she's with me. I love her a lot and her company and humor and good nature mean more to me then having to spend some time helping her with this and that. You are more valuable to him than he may know how to say. Just be grateful and try to share a positive disposition with him as much as you can - that alone is worth its weight in gold. God bless.
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I am very grateful for you expressing your feelings and I do hope you express gratitude to your spouse and allow his respite without envy or feeling left out.

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.
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BurntCaregiver Jul 2021
Allye1,

Well said. You truly understand what the world of caregiving is like.
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How's that go again.... for richer or for poorer.... in sickness and in health.....

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!
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BurntCaregiver Jul 2021
wolf1154,

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.
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I know buying that van sure makes it more convenient but.... how about calling and getting to your appts. using services like MedRide? This works only of course, if you plan on getting out on those rare occasions. I hope you "eat right". Many do not. I just had a patient that ate whatever she wanted and it had caused her many health issues and their son said they had always eaten that way and "That is why I don't eat over there". Actually, both she and her husband did this. He did the cooking and was happy to do that. Gave him something to do.

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.
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TouchMatters Jul 2021
Often MedRides or variations of this type of service do not 'walk' the person to the medical office. They are not responsible to help people beyond - perhaps - getting off the bus. So it is important to check out the service.
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The truth is you are a burden to your husband physically and financially. I find that handicapped people don't want to be treated like children and lied to about their conditions. You deserve this respect too. Clearly you're a very unique person because you're actually genuinely concerned with your caregiver's (your husband) happiness and quality of life. That is extremely rare. Normally the care recipient expects the caregiver to have no life outside of what they allow them to have, and will be jealous and resentful if they have anything outside of what their care recipient permits. You actually want your husband to enjoy more of life. God bless you.
Being a burden to someone does not mean they don't love or want you around anymore. Your husband keeps you around because he wants you with him. Sure part of why he stays is out of marital obligation to you, but that's not the only reason. He has a choice and whatever his reasons are for staying with you, his number one reason is love.
You can't say what kind of life your husband would be living if you weren't around. He chooses the life he has and the person he has it with.
The reality is you need more care than you're getting. No one's hygiene should be neglected because they can't do for themselves anymore. Please look into a few more hours a week of aide care because you need it. Don't worry about what your future care will look like or cost because there's nothing you can do about it. If the time comes when you're out of money and need Medicaid then you'll have it.
No matter how careful people have been with their money or how well they plan for the future, if they have to go into a nursing home at some point they take it all anyway. Unless someone's been paying into a long term care policy. Depending on the coverage most LTC policies eat up around 30% or more of a person's monthly income in premium payments. So either way, the money gets spent.
You're alive and you have a spouse who loves you. Spend some money to get the new van. Spend some on more aide care to help you. Don't worry about ten years down the line. Good luck.
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Have you met with an elder law attorney. What If one of you should need a nursing home? Is there a plan in place?

Find an agency to come in a few times a week for a few hours to assist you with hygiene.
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It sounds like you two have a boatload of love between you; so please don't add to your physical burdens by creating mental ones. There is lots of good advice on this forum - so my suggestion would just be one practical one that I am 100% sure will relieve you of at least one of your hygiene issues. Go on Amazon and order a portable bidet kit for your toilet. It installs easily under your existing toilet seat, it's inexpensive (Luxe Neo around $40) and with the turn of a button will leave you clean and fresh every time! One less problem to worry about : )
As for showering, a physical therapist can teach you and your husband how to transition into a shower chair, and you can shower seated using a hand-held spray. I wish you both the best - keep us posted - we care!
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I think the word burden is relative, from what I have seen, issues can be from many many things, addictions ( gambling, drug, alcoholism, sex), mental disorders ( agoraphobia, depression, bipolar) , financial issues ( spending ,divorce, children ) ,excessive cheating, mental or physical abusive etc…
is your husband perfect? No one is, If you guys have enjoyed each other & gave each other mutual respect, more than likely, he doesn t think it is a big deal,
people have “stuff “ & if we love someone , we deal with it , because they have “stuff” & as time goes on , will get more, to me ,it’s about respect ,a sense of humor & ability to utilize help ,that matters,
ex( a person who screams at me all day while drunk , using all our cash at the track , sleeping with god knows who , refusing to get better , would be a burden…
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You are not a burden. Since you are mentally sound, consider all that you still can do. Also, consider how you can make an impact on other lives: write, man a phone as a volunteer or for pay, start or join an online support group for wheelchair bound people, create art.... use the wonderful imagination and skills you have to enrich your life and others.

As for the hygiene issues, consider betting a bidet attachment for your toilet. It will clean your nether regions every time you use the facilities. Sponge baths are also fine for most days of the week.
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Get your doctor to write a prescription for an aide to help you shower I think they came twice a week for my Mom.
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since both of your are retired, what's the problem? Gives him a purpose in life. Better than watching television all day. Try to get on Medicaid and once on that they pay for transportation such as to doctor appointments. So does hospice
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TouchMatters Jul 2021
It isn't 'a problem' - it is HOW this woman feels.
Compassion and sensitivity go a long way.
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I agree with cwillie. None of us knows our future, and that is probably a good thing. If situations were reversed, and your husband was the one in poor physical shape, would you still care for him? I know it's hard in your situation to see any good in what you are going through, but I hope you will turn to God in prayer. He is in control of our situation, and He holds us in His hands. God bless. I will pray for you.
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You should be able to get Aides to help with your Bathing/ Showering 3 times a week.

Dont worry about being a burden, the situation could be reversed.

Do what you can for yourself and with the Caregiving help to give your husband breaks.
If your husband was in the military, You can get free help from them from the VA, you'll get up to 30 hours a week.
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