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?
You are clearly none of those things SeaGlass. Everyone here cares for you and loves you. It may sound strange coming from just letters on a page but we really do value you and you are not a burden to those around you. Feel free to reach out if you want to talk :)
I know you are not mentally unable to make decisions or having to make financial ones, but I would advise that you and your husband both have POAs drawn up, initially in favour of each other but with a back up for if the other is not able to carry out the duties. We never know what will happen in the future but we have more control if we plan, it doesn't make us more of a burden on each other but it helps if we become in need of a level of assistance that requires someone else's input.
This might help. On the hygiene. Baby wipes! They are great for all over the body. My daughter hates the bathroom where I am care for my Grandmother. So on days we can't get her to a bathroom. We use Baby wipes. Or A small container of warm water, a wash rag and a towel to dry of with. For many moons people had to go to bath houses and only had a pitcher and a wash basin in there homes. Your blessed to have a wonderful man whom sticks to his wedding vows.
Gloria
What can you do? Write love letters.
Your memories, what’s important or saucy thoughts or fantasies. It will help keep you in the moment and give you purpose and him joy (we seem to forget adults thrive with praise and shows of love as much as children do).
It may not be easy, but then again, your effort to brighten his day matches his effort to care for you, and that makes you a giver to balance the help you need.. If it’s too hard, try a one line note or a quote or a joke once a week. It gets easier when practice helps unlock creative thinking.
And when bad days come, he’ll have your letters to lighten the load and you’ll have the next letter to look forward to writing.
Have fun! You both deserve it.
It;s time to call the county and tell them you need additional help, and that your husband cannot be the sole caregiver. :You and he needs more help.
Yes, you are a burden. But isn't that part of the LOVE that comes in a marriage? You would care --with love-- if the tables were turned. Would you call your husband a burden? Yes, but that's part of the deal in a loving marriage.
Get more help! Focus on something other than YOU (your meds, your abilities, your finances....) Grow violets, learn to crochet, read a book,.....)
May God bless you and your husband.
In other words, I would support this woman to reframe her own word / self-reflective feelings about herself vs agreeing with her.
So here's how we solved the bathing issue for DH. Been using www.scrubzz.com non rinse "sponges" permeated with antibacterial soap. I just ordered a new supply and added their new shower cap design for washing hair. The regular sponges work for hair too. Hope this works for you.
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)
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.
Also they can help you afford some home modifications if you need it. Such as bars in the bathroom, a detachable shower head, lift chair, etc.
God Bless You! Know that you are loved! I too care for someone and have to help with all her needs. I would NOT give that up for anything else because I love her and WANT to help her and enjoy her company.
What can you do to change your fear of falling? I don't know what your shower looks like, but please let me offer a couple of suggestions. Since you do not own the place you are living in, you won't be able to change the bathroom. Oherwise, you could convert it into a roll in shower. If you have a tub, there are benches that extend over the side of the tub, you can sit down and scooch across to the tub. If you are OK with getting into the shower area, purchase a stool or small chair to sit on. if you don't have a shower head with a hose on it, I recommend getting one.
Someone on this forum suggested putting a large dab of shampoo on the seat and when you wiggle (my terminology) around you will soap the, as my mother called them, necessaries. then you can rinse them off.
Exercise to keep your legs and arms strong. I too have a really bad spine, I try to keep my trunk muscles built up to support my body. You will also feel better when you exercise.
My heart goes out to you it is so hard to feel useless. Hang in there.
I wouldn't recommend this. And, a person might dislocate a hip (I'm a massage therapist). A bidet toilet sounds much better to me !
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.
Compassion and sensitivity go a long way.
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.
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…
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!
Find an agency to come in a few times a week for a few hours to assist you with hygiene.
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.