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dawn1947 Asked January 2019

I'm having trouble being my husband's caregiver and his wife, friend etc. Anyone else in this situation?

My husband had a stroke about two years ago and has had several surgeries and other medical issues. He does have rides to doc appointments and to dialysis. My caregiving for him is 24 hours 7 days a week. I am burned out and not sure how much longer I can care for him. Peace, dawn1947.

Godguidesme Jan 2019
Dear Dawn 1947,
I feel your pain in many ways, as I am doing the same for my husband.
The roles changed; We “lost” our partner; we are the navigator of life; we are our husband’s strength.
Having said that, our load is so heavy that we MUST get replenished physically, mentally and emotionally. Some things worth looking into:
** Call your town, call your State’s department of Aging, or various religious organizations to find out if they have
a group of volunteers who can visit
your husband so you can perhaps
take a walk for fresh air or just get away a little, or if they can provide funds for paid help at your house.
**Reach out to friends and ask for specific help like bring a meal or
sit with him
**Call Alzeimers AssociationThey give $1,000 for respite. They will explain or guide you elsewhere
** Ask a good neighbor to give you a break if possible
**Talk or write your frustrations out to release them ( this forum is the best)
** Talk with your husband’s Doctors to see if they have or recommend a Social Worker to help YOU
** Try to exercise and meditate even
15-30 minutes a day. Natural endorphins are produced and give you needed euphoria
** Try starting a “Go Fund Me” Hopefully you will get some money to pay a Health Home Aide to assist you.
** Look into some Adult Day care for any volunteers they may have or at approximately $100 a day they may transport him on a wheel chair and keep him for the day, assuming he can be transported.

Please do make some adjustments before you are totally worn out.
Yes we are in this for the long run but this shall pass at some point. Stay strong.
I said a prayer for you.
Sending you hugs 🤗
dawn1947 Jan 2019
Good ideas, thanx❤️
SandySL Jan 2019
I am not sure I have anything to offer others haven't but I want to say I understand as have gone through a similar situation. It is horrible when we become our spouse's caregiver/decision maker/-- everything. I find that my roll as wife is gone -- I am now the negotiator of his situation full time. I could no longer care for him at home as he is totally disabled and all ADL's are gone except he can feed himself if food is cut up. He does not have dementia but sometimes think that makes this situation harder. This is emotionally wrenching -- I am no longer working and don't have family on the home so those stresses and joys are gone. I am drained -- but know I must go on and be his advocate in this maze.
Hugs to you -- it is so (can't find the proper word) when our spouse/life partner/companion in all things becomes our job. My whole life -- waking and "sleeping" hours are taken up with worries of how I can keep doing this ,, emotionally, financially -- I have tapped all resources as you must. Most are not available to us but a few have been -- keep trying.
My friends are my saviors. Do not give up time with friends. They do ask about my husband, and do mean well. A couple would help if I asked. A couple really do understand and are good listeners. Mostly they help me have a "real" life -- dinners out, a book shared, maybe a movie. They are my salvation without always bringing in the care moment.
I just want to offer support -- it is so very hard -- I cry a lot -- I will say be strong but I get tired of being strong.

Oh this is a depressing post, sorry. Embase your friends --
dawn1947 Jan 2019

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Ahmijoy Jan 2019
My husband is bedridden. He had been losing mobility for at least 4 years and about 18 months ago, collapsed and couldn’t get up. I do everything for him but feed him. I also work 20 hours a week with young children which in itself is exhausting. I take care of the house and make most of the financial decisions. Other than work, I don’t go out at all. I’d love to have a sit down meal in a nice restaurant.

I do what I have to do, including the job. I do the best I can. We cannot afford a nursing home and wouldn’t qualify for Medicaid. We’d lose our home and I’d have to rehome my animals who are my only comfort.

You are not alone. Check his insurance and see if he would qualify for a health aide a few hours a week. We all believe we can’t do it. And then we go ahead and do it.
dlpandjep Jan 2019
Hugs to you Ahmijoy.
NYDaughterInLaw Jan 2019
Your situation must be so hard on you and there's no end in sight. I think that when caregiving is temporary it's easier to get through it, but with chronic diseases and progressive illnesses there's no end in sight. No one can work 24/7 or be on call all day, every day losing sleep and feeling chronically sleep deprived. It takes a huge physical and emotional toll. Recognizing that you are burned out is an important first step. What resources do you have to tap into so that you can start to step away from being your husband's 24/7 caregiver?
dawn1947 Jan 2019
❤️❤️❤️
IsntEasy Jan 2019
If you're feeling that way, you need help. Don't wait until your own health suffers. Then, someone else will be caring for him anyway and what will have been gained?
Have you explored assisted living and home care?
dawn1947 Jan 2019
Deniese Jan 2019
Write to Home Instead they have a grant that they give out 4 times a year in which they will provide you with 2 days of 24 hr caregiver help. The catch is it is up to them on who they chose with the amount of people that write to them. Just as you wrote aging care add more info. I am a caregiver to my 93 year old Dad and is a 24/7 as well. But he is somewhat independent in that he showers/dresses himself and can do some stuff around the house. I got the grant back in May of last year and finally used it the first week of December. They allow me to break it up in which I had 4 days of caregiving help for 12 hrs.
DarleneLeslie Jan 2019
I didn't know about the grant. Thank you for that information.
Grandma1954 Jan 2019
Is your husband a Veteran? If so he may qualify for help through the VA. They do provide Help that will come into the house. It is not for a great length of time but it does help.
Is he a candidate for Adult Day Care? This would be good for both of you, he can get socialization and you get a couple free hours a few days a week.
Senior Services may also help with programs as well.
I am sure others will respond with organizations that will help as well.
You should find a Support Group that you can attend, this forum helps a lot but it does help to talk to real people and possibly build connections with people as I am sure you have lost friends since you can not get out easily to go to lunch, a movie...
dawn1947 Jan 2019
Thanks, peace, dawn1947❤️
Lizhappens Jan 2019
Get help. No matter what it takes. Figure something out and get some help. Take a break. Take care yourself. You can get over the burn out if you start taking care of yourself and not making yourself do it 24/7. Do it for your health, and your sanity. And you will be giving your husband back the gift of you.
dawn1947 Jan 2019
Thank you so much❤️
Singalong1 Jan 2019
I'm with you on the care giving. My husband has stage 4 lung cancer in remission, prostrate cancer returning again, COPD, a tongue that is being checked for cancer and Dementia, now where he can't remember day to day and sometimes hour to hour. The care facilities around me are $4-5000 a month, out of my price range. I have a granny quarters that I am going to rent to a lady who has caregiving experience to see if that will work. I'm also checking out senior daycare facilities as an option. I would also welcome any other ideas.
dawn1947 Jan 2019
Thanks and I'm sending healing energy to you❤️
DarleneLeslie Jan 2019
What a awesome job to do what you're doing. It's obvious you really love your husband. But YOU need help! I don't know what your financial situation is, but if you can afford to hire someone for a few hours each day, do it. Do you have children? Can they help? Even to just sit with him for a few hours to give you time. Is he a veteran? There is a program available but he has to be a patient. Make an appointment at the nearest veterans hospital. They have transportation available if it is a long drive. Their van also has a wheelchair lift. If possible give the "difficult" work of the morning, bathing, shaving, and dressing to someone eles. He may not like it at first, especially if he's used to you but you have to encourage him to get used to someone else. You'll get sick. If something happened to you, who who come in to take your place? Stay well.
dawn1947 Jan 2019
Thanks for your support❤️
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