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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 ever feel like you are a burden. You are loved! Everyone I've spoken to who is a caregiver does not mind caring for you. They love being a help and I know you are a good person to be around because you are able to think of others <3. From the forums the only time someone becomes a burden is if they are mean, selfish, and abusive.

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 :)
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Just remember you are loved. This is what marriage is all about and if the tables were turned you would be caring for your husband. Be happy you have a guy who loves you so much. Do you have a friend or family member who could come and stay over a night or 2 so hubby could take a break ? Maybe even just check into a hotel and catch up on sleep, room service and maybe they have a pool there ? Stay strong . Maybe a counselor or a good friend to “ vent” to? Prayers and hugs being sent to you🥰❤️🙏
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Talk over what you have said here with your husband, and believe what he says. We all marry not knowing what it will bring but because we love the person we marry and if things get hard we expect to be there for them. Your husband sounds a very loving, understanding and supportive person - listen to what he says. You didn't ask for the disabilities you have, you are not a burden unless he finds you one and says so.

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.
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Your a sweet heart and you and your husband sound so cute.
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.
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seaglass please dont feel this way. I took care of my Mommy and I'm so grateful that I was able to do that for both of us. I would have been a big mess if my Mom was anyplace else. I am so lost and broken now without her and I would give anything to have her back again. The only thing that is helping is that God will bring me to her. I just wish it was sooner rather than later. You are still here and I bet your husband is so grateful for that. He loves you....and I know you love him. That's what's important.
Gloria
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Based on your comments about how he cares for you, if you weren’t around, your husband would likely be wishing he could hear your voice just one more time.

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.
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What if the situation were reversed & he was in the wheelchair & having the difficulties that you are facing. I'm sure you would do just as he is doing. I suggest you speak with a counselor &/or psychiatrist regarding depression &/or anxiety. You may also benefit from a consultation with a Case Manager, PT, etc. Contact your doctor's office or local senior care agency for assistance.
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seaglass5: Imho, everyone ages differently; life may sometimes not be a 'bed of roses.' However, we must be grateful for life itself. The respite care is critical for your husband and I'm so glad to hear that you have that in place. Hopefully, your husband does know what he is talking about regarding your financial situation. You may want to meet with a financial planner just to verify that. Best of luck.
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If you can have a physical/occupational therapist do a home assessment, they can recommend techniques and devices to make your care easier and better.
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I will give you my true, honest opinion. If you were my spouse, I would be thankful to still have you in my life. I would do anything possible for you. Please try not to feel you are a burden! Please accept that your husband loves you and will do anything and everything for you.
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Petite1 Jul 2021
beautiful response and I totally agree.
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Speaking from experiences (quite different from yours), I'd rather spend time with someone I love and like who needs care, than with an able-bodied abuser or horrible person. You have a conscience so you probably fall into the former category and your husband is with you because he loves you not because of your physical condition.
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Don't be ashamed of your situation. Thank God you are alive!
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.
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TouchMatters Jul 2021
To this woman's husband, his wife may not be 'a burden' as you readily say. He may feel a responsibility (as a loving husband). Using the word responsibility, or perhaps an/other/s words feels more sensitive and compassionate than saying burden. He may not feel that way at all.
In other words, I would support this woman to reframe her own word / self-reflective feelings about herself vs agreeing with her.
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I truly am sympathetic, I worry I'll move from carer to caree as am handicapped too and don't want to be a burden. I need to journal what logistics I've learned to hopefully help son if he needs to be my carer.

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.
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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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Lord, I can understand completely where you are coming from as I became disabled in my 70's due to an old spinal injury and now can't walk. It is nearly impossible, difficulty, time, frustration, pain level - but I FORCE myself to do the impossible. I still drive (safely) and work two jobs (51 years and l5 year) even though I will be 88 and despise what my body has made me into. I still handle l00% of all of my affairs, tend to my kitty, just finished six years of online college courses, and the list goes on. But the difference is - I have not a soul in the world - no one is left. Two friends remain but they live far a way so l00% of everything falls on me and it is not easy. I can imagine how you feel with the husband being in the picture. Is it affecting him personally - not in terms of what he has to do for you but psychologically? Is he going through more difficult times and giving up a great deal of his life? I don't know enough about the impact from what you wrote. Does he mind caring for you or is he resentful. You need to analyze and determine the situation and then you can decide what YOU want to accomplish which would be the best for both of you - stay in your home with him? have a caretaker? assisted living? Once you know more of his inner feelings, you will know what to do. And your feelings of guilt should not be guilt - just anger and frustration as to what happened to you. You need to figure out what you want and expect in the future - as does he. In the meantime seek advice of some professionals for some input as to the right actions. But what you feel makes perfect sense and is most logical. I'd be upset and angry too and worried.
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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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Don’t worry about things that may not happen.
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You are NOT a burden! We all need help at times and your husband loves you! It is great that you got some respite. Depending on where you are you can also look into in-home care through programs like IRIS. They can help you financially and you are the one in control of who you hire ...including family and people you live with. So you can have your husband as a care-giver. He already is and now it could provide you some income.

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.
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Your local Area Agency on Aging should be able to provide you with aides to assist your bathing and grooming and other tasks. Check with your local Senior Center. They should have information on available help for disabled seniors.
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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 2021
Beautiful.
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Seaglass5, you mentioned; 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.

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.
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TouchMatters Jul 2021
Couldn't a person easily fall off a chair with shampoo on the seat?
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 !
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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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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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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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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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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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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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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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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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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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