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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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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 7, 2021
This made me CRY!
Good tears though.
Sounds like you were both so blessed to have each other.
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Thank-you for your post. I appreciate your openness, as it helps me to hear from others in a similar position to me. I am a double leg amputee as of three years ago. My husband is still active, and I am not, so I share that with you. We also share the loss of our "different and perhaps richer life." My husband mourns the loss of the life he expected to have during our retirement, which makes me feel sad and guilty. (To those who might think my husband is wrong in any way - don't - he is a wonderful man who gives me tremendous love, compassion, and assistance.) The only advice I have is to accept that we (you and I) have been put on a long, difficult, less traveled road. It is completely acceptable to feel all the feelings you have. Don't beat yourself up or think that you are doing it "wrong."

Also, have you tried a shower chair that slides from outside the shower to inside the shower and then using a hand-held shower head? Might help. Also, we bought a bidet seat that sits on top of the regular toilet seat? Life-changing.
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Reply to lotstolose
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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 7, 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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God bless your heart. You sound like my 93-year-old mother. Gave her whole life to her family and now she feels remorseful of negatively impacting the quality of my life. This sort of selflessness makes me want to be there more. My mom can barely walk and she is more concerned about my future well-being than herself. I just tell her that I love her forever. No if, ands or buts... She gave me life and life must be sacrificed for life. In the wilderness, it's life for life or you don't eat. As a Christian Christ sacrificed his transitory life so those who love him can have it more abundantly in Heaven. She thinks she's costing me something but she isn't. She is merely giving me the opportunity before she leaves this world to care for her and return all the love and affection she gave and showed me. I thank God for giving me the opportunity to show my mom that I would never leave her alone. My brother is rich and I am not, but I'm her favorite son she always tells me... In the end, people do not care who you are, what you have and all your degrees. They only care about how much love they felt from you. How you made them feel valued. As hard as this caregiving ordeal is, I wouldn't trade the opportunity for the world to show my mom how much she really means to me. I've surprised her. I was an unruly teenager who took a long time to grow up and mature, today she cries and wishes my father could see me now. I've become the sort of man that he would be proud of and no amount of money can ever replace that feeling of having grown into somewhat of a man. Caregiving is hard but the glory of your sacrifice will descend with you into Heaven where your belongings and riches cannot further go. May God bless you.
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Michelle2828 Jul 9, 2021
Beautiful.
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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 6, 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 6, 2021
Thank you for your thoughtful reply. I really appreciate it.
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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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Reply to RedVanAnnie
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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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Reply to BurntCaregiver
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HI Seaglass5
I read this and I then read out aloud to my husband. I asked him does he feel this way, because I've been taking care of him for years. He told me that yes he does feel like you do at times. I told him that I might get frustrated at times, but he's not a burden. I told him, you're my soulmate. So, with all that said, I bet your husband loves you very much. If he didn't love or he thought you are a burden; he never would have agreed to selling the house and also getting a van. You sound like a woman with a gentle soul. You said you have a hard time bathing. Can the respite care help you in that? I know you may think it's bad when you have to depend on your spouse for so many things, but if he didn't care he wouldn't do them. So please, try not to be so down on yourself. You sound like a gentle spirit and if I lived close to you I would give you a hug and who knows what else. May God send his angels to give you comfort and strength. May God bless you! (Hugs)
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Reply to SylviaT
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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 9, 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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