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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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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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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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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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Don’t worry about things that may not happen.
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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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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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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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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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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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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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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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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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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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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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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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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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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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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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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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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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