My husband is wheelchair bound and has Neuropathy , some Parkinson's and a mild dementia. He cannot get up fast enough to urinate so he lives in Depends. At times he loses bowel movements as well. We could be in a car, restaurant, I always have a change of clothes and soap and a washcloth. It's a mess! People have told me to get help. Help??? He wakes up all hours of the night completely drenched with sweat and urine. Even with lots of plastic and a large pad, the sheet is still wet. I have to change him from head to foot along with the bed. If I had someone coming in the morning, I would not need that person. He or she would be sitting around for 2 , 3, or 4 hours.....whatever the schedule is. I try to explain that to people but they do not understand. It's expensive to pay someone 20 or 25 dollars per hour to have them sit around. I take one day at a time and whenever it gets too much for me, I will consider a placement for him. I do pray ever day and try to abide by my religious beliefs. I still remember the day we were married in 1956 and promised "for better or worse" in our marriage vows.

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Much thoughtful advice given below. In the meantime as your work out what you think is the best path forward, please contact your place of worship (their admin office) and find out how you can seek some volunteer help. Our little church helps people all the time, often people who do not even attend our church but are in dire need. If you have long-time friends and neighbors, don't be too proud to ask for them to do little things for you here and there. Often people are so willing to help, but don't know what you really need. Blessings!
Helpful Answer (1)
Reply to Geaton777

"For better or worse" does not mean that you need to wear yourself out unto death in his care.

If you were proposing to drop him off in a care center and take off for parts unknown to sit on a beach in perpetuity (I'm thinking of Maisie-bird in Horton Hatches an Egg), then I'd say that you should re-think your priorities.

However, an elder caring for an elder with dementia and incontinence (alone, with no "help") can be a death sentence for the caregiver. I have a couple of caregiver aunts who predeceased their elderly demented husbands. It was not pretty.

"Help" means that you get breaks. Help means someone to clean the house and do laundry; take out or brought in meals, respite in a facility so you can go to a family event. It means taking some time to go to YOUR doctor appointments (want to hear about my friend's mom who ignored her cancer symptoms while caring for her bed-ridden husband?), get your hair cut and the oil in the car changed.

Help MAY mean that he resides in a care center where YOU act as his advocate and his voice and visit as his loving wife.

Please take some time to take care of yourself. ((((hugs)))))
Helpful Answer (2)
Reply to BarbBrooklyn

Medicaid will come to you and evaluate him. Call your local Social Service Dept and ask about Medicaid homecare. They may help u with placement. Your Office on Aging maybe able to help.

Have you tried not giving him anything to drink after a certain hour before bed?

That "better or worse" phrase was written at a time when people only lived till 60 or 70. When families were big and everyone helped. Not that way now. At 80 you have limitations. You are going to hurt yourself and then who will care for DH. My husband is against going to a NH. I have told him I will care for him as long as I can but I will not promise not to put him in a NH. Your health is important. Wouldn't it be nice to get up in the morning, take your time, visit DH after lunch for awhile, go home have dinner and a decent nights sleep. You need to live what life u have left.
Medicaid will leave you with enough money to care for yourself. So make that call.
Helpful Answer (3)
Reply to JoAnn29

It sounds as though you are soon going to have to give over his care to an Assisted living or memory care place. I think it will soon become too much. We can't have him killing you off before he goes himself. Please consider it could be close to time for placement.
Do know that the more plastic you are forced to use the more sweating there will be. It is hard for skin to breath with all the plastic. Look on the forum under incontinence as there is some good advice there.
It sounds really tough right now. I am so sorry. It is good to know your limitations. Not everything can be as we wish it was.
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Reply to AlvaDeer

Yes I agree. Start looking for or get a recommended HOSPICE place from his Dr. It is time to do that. Or even Palliativs Care. My dad is similar. He has Alz. Late stage. He does the same thing. Gotta go, gotta go then stand there looking at the toilet. Lol. Not funny but you gotta laugh. Point is there's no use to rush them to the bathroom. Incontinence is always double the work. And always worse in the middle of the night. For us it's about 3/4 in the morning.
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Reply to LooseIt

I understand how you feel. When my husband was in rehab for mobility issues two years ago and returned home, I was convinced to get a bath aide. He was ok, but came with nothing. I had to run around and gather all the supplies, water, soap, bedding, etc. I truly may as well have done it myself. And...hubby had a bowel movement fifteen minutes after the aide left. Social workers have tried to convince me to get housekeeping help but I don’t want anyone in my house and we have a large, anti-social dog. I’ve learned it’s just easier to do it myself, as well as I can. However, if caring for your husband involves dangerous lifting and moving, you may want to seriously consider alternative arrangements.
Helpful Answer (0)
Reply to Ahmijoy
shad250 Sep 16, 2019
He held it until Aid left. Lol
At some point you may need or want help when that time comes be willing to get it.
Until then just tell people that you manage just fine the way things are now.
I hope that he is able to get up so you do not have to change him and the bed with him in it. If you do have to change the bed with him in it there are ways to do it and once you get used to doing it the procedure is fast and pretty easy. Easier if you have equipment to help you.
If he is eligible for Hospice you might want to call, you would get help a few days a week and you would get the supplies and equipment that you need to make it easier and safer for you and your husband.

And a caregiver is not just there to change your husband or the bed. They are there to help with laundry, light housecleaning, they can get lunch ready while you get out and do some grocery shopping, go to t church, have a cup of coffee with a friend, pick up the latest book at the library. Or just sit and collect your thoughts.
Helpful Answer (2)
Reply to Grandma1954

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