My husband has prostrate cancer and Parkinson’s. He fights me on changing his depends. It’s already to the point where we can’t go out or to other people’s homes. He spills food on the floor when he eats (I have to have him in a bib), chokes of food sometimes, losing ability to pick up on social cues, can’t get off a normal toilet, needs me to wipe him and dress him. Now our home smells like urine cause I can’t get him to change his depends as often as he needs to. So now I can’t invite people to our home and he is depressed that he never sees anyone. I have a caregiver 40 hours a week (when she can come) so I get out and do things with my friends. This is so hard.
Is he more cooperative about hygiene with the caregiver?
“ There often comes a time when someone is too resistive to care by a spouse or other family member , rendering it too difficult to manage at home. “. My mother’s doctor told me this .
Medicare does not pay for just CNAs. This person already has an aide 40 hrs a week. I worked for Visiting Nurses and they will only go out to a client if there is a doctor order. Then its only for what the doctor ordered. It could be doing a pill planner, checking vitals, woundcare. Very rarely did the nurses bathe a client or pottied them. If that service was needed, then a CNA needed to be hired. Our nurses were only there to do what the doctor ordered.
If so there is a "new" program that Medicare has called GUIDE.
there are many advantages to it including up to $2500 per year towards in home respite care, Adult Day program and 24/7 Community care.
I think at this point you need to go with him each time he goes to the bathroom and make sure that he changes if needed. (you could "accidently" rip the brief at the side so that he has no option but to change it.)
Also getting him to the bathroom EVERY 2 HOURS, I know it sounds like a lot but it may prevent the soiled brief so they do not have to be changed as often.
the food issues will get worse.
he will choke more often.
You can ask the doctor for a "swallow test" to see at what point you are in having to mince his food or puree it. the same with liquids, they may need to be thickened and they will let you know how much they need to be thickened. The visuals for thickening go from a nectar thick in texture all the way to pudding thick.
You could choose to go on this way. Or NOT. He is your beloved husband, and you are his beloved wife. Would either of you recommend that the other one live like this?
Please find him a good care facility where his needs will be met by trained professionals who have experience in caring for those with issues like your husband's. He will get much worse, never get better. In a facility he'll have a care team 24/7, people to interact with, new friends, you can be there as often or as seldom as you like, and your home can again smell like a home rather than a neglected public restroom. Your mood will become more normal, and you can again be your husband's cherished companion, not his care slave.
My husband is in a memory care facility. I'm there almost every day. The staff gave him a cute nickname, they love him, and he is content. This past week, he's experienced visiting pets of employees, Disney movies while relaxing in recliners in the TV room, a visiting dance team performing, a birthday party for a resident, and a dance party during which an aide held his hands and guided them in dance moves so that though he's in a wheelchair, he was able to participate. When the music stopped, his aide kissed his forehead and thanked him for the dance. He loved it. Oh, and he's had his own visitors as well.
Keeping a seriously ill person at home is not always a gift to them. It's often like a prison - for everyone involved. I wish you luck, which may appear in the form of a differently thought out plan for his care. I'm so sorry you are having to deal with all of this.
She should be changing his briefs, and cleaning him, helping with bathing, and disposing the used incontinence products.
1 - He should be in briefs - adult diapers, and someone else may need to change them on a schedule. Making it a consistent schedule will make it easier for him to adapt and accept that this is what needs to be done.
2 - Use incontinence wipes (Walmart's Assurance brand are great!)
3 - Buy small waste bags - like 4 gallon - and have somewhere to dispose of them Outside of the home! I keep a 30 gallon can on my back patio.
4 - Buy disposable (or washable) pads to cover furniture and on the bed.
5 - If he is choking and having difficulty eating, he needs more than a bib. You can have him evaluated by a speech therapist for swallowing ability, but if you want to skip the time and expense involved, just assume he has difficulty chewing and swallowing safely, and learn how to modify his diet for Dysphagia. Basically, soft foods, minced foods, thickened liquids
( I like Nestle Resource Thicken-Up Clear)
My husband, post stroke, was always spilling his drink, or dropping it, so I started buying plastic cups with snap on lids, designed for toddlers, and I use flexible straws which are easier for him to use. I also buy paper cups with a ripple sleeve exterior, which is easier for him to grasp and hold on to. Those also have a snap on lid which I can push a straw thru the drink hole.
My husband, at 53, suffered a massive stroke which caused considerable brain damage, leaving him without critical thinking ability, and very impulsive. He didn't lose his stubbornness, though! He feels threatened by any personal cares; diaper changes, bathing, trimming his hair or beard, washing his hands, etc.
It is literally a fight every diaper change. I have to do it anyway. I get pushed, grabbed, hit, as he pulls away from me, trying to avoid being cleaned. This is something you should be having a skilled CNA do! You may need a team of 2 for bathing and diaper changes, if he is resistant.
If he qualifies for hospice care, they will provide CNA's to bathe him weekly.
I already gave some tips to mitigate the smells in your home. Here is another one - you will have to wash soiled clothing right away. Or at least, rinse out in the sink. And, crack a window open to air out. If you can get the smelly house under control, and start inviting friends over, you both may feel better, and that could give your husband the motivation he needs to cooperate with his incontinence routine.
It’s hard and painful, I know many times over.
We even make promises with those loved ones sometimes, early on that we will never let them end up in a home or put out to pasture.
Sadly, we are taxed and lose ourselves in the process and our relationship with our loved ones begins to suffer.
They can’t control what’s happening to them and most can’t control their behavior which even can be physical.
We can control things and most of the time when things don’t work out the way we want and need them to and Companionship turns into Guardianship, we MUST do what is healthiest for All.
You can request another Caregiver or Nurse. Even switch companies.
I suggest calling 211 or more organizations.
If he’s a Veteran, they have resources as well.
Consortiums exist in every county and even lawyers and judges are connected with the social workers who hire and place caregivers with patients connected with the consortiums.
County Ombudsman can assist as well.
Senior day Centers in your town or nearby have caregivers who take care of some of their people.
Visiting Angels, etc.
Nursing Students looking for a room to rent in exchange for caregiving our loved ones in their own home.
Caregiving for our loved ones always runs us into an early grave.
When we have done our best and things only keep worsening,
we can’t worry about promises or what anyone thinks and feels regarding having to reach out and move them into a licensed facility with skilled caregivers and licensed healthcare providers.
Some places have cameras so that family can keep an Eye on their loved ones whenever they want.
Medicare and Medicaid even help or cover costs, some use sell off property money, CDs, Stocks and Bonds to pay for care.
We are not a horrible person or adult-child for having to do what is best in the long run, but what good is anyone after caregiving has run them into the ground and can’t help our loved ones at all or end up in a hospital or mental health facility ourselves, because it impacted us greatly.(?)
Companionship or Guardianship ?
Best to you and kudos to you for doing the best you can.