I take care of my husband, who had a stroke about 2 years ago. He's pretty much bedridden, although he has a walker for trips to the bathroom (and most of the time he gets there without peeing on the floor). But, although the stroke made it so he cannot read with comprehension -- hard as he was a poetry expert -- he's pretty much compis mentis. He watches TV. I take care of his meds (he is a non-compliant diabetic and had a quad bypass, now takes xarelto among other things) and put the needle on his insulin pen, make his snacks and meals, and I handle what he used to.
I teach English full-time at our local community college. (My shrink said. "Don't you dare retire; you'll be miserable" and he's right.) Nothing is close by -- doctors are from 30 min to 2 hours away -- because we live in the north woods. So everything takes a long time to do. I leave him with his alert pendant and food in order to teach, get groceries, see my therapist and other medical people.
He won't leave the house now because he had a fall coming in the door about 9 months ago -- I think he may have been having a TIA because I could see that he couldn't lift his foot.
He won't let me wipe him after a BM, and he can't wipe himself well (lack of flexibility), so he constantly gets poop on his sheets and resists having me change them. He refuses to wear disposables and just spends his time bare- bottom, which makes the idea of getting someone in for a few hours a week seem impossible.
Sorry this is so long. I realize I have little to complain about. But I'm so tired.
Meanwhile, he has an alert pendant as well as a DNR, which is why he's willing to be alone. Psychically he's ready to die, but his body's not there yet. And yes, he could have another stroke alone, but it could happen when we're asleep too. He's about to be 82 and feels like he's had enough. But of course he could go on for years, too.
What would happen if he has more strokes alone? Also, just because someone with dementia doesn't generally like to leave the house, doesn't mean that they may not suddenly do it without warning. If it's past the early stage, people with dementia need constant supervision. I recall that a friend of mine's mother had dementia some years ago and he was not prepared for what he found upon his return from an overnight trip. She had smeared feces all over the entire kitchen, bedroom, bath and hallway....floors, furniture, etc. She had no idea how it got there! He had to hire a professional cleaning company to clean the house. Soon afterwards, he was able to get her into memory care.
I appreciate all your kindness and your advice. This forum is, for me at least, remarkably restorative. I would hug you all if I could.
You mention a lot of things DH 'refuses' to do. How 'bout you have a little chat with him about the New House Rules that will be enforced (like wearing Depends 24/7 and getting help to clean up after a BM) or you'll have to look into long term care placement for him. He is not the only person living in the house that has rights; you do too. In fact, you have MORE rights because you're doing the dirty work of washing/cleaning/caring for him in addition to working an outside job. Hello? It's time for DH to man up and do his part now! If he's 'non compliant' with his diabetic diet, I'd remove ALL sugary and high carb foods from the house. Lock them up in a separate cabinet if necessary, but keep them out of his sight and his reach. Exacerbating diabetes will only cause YOU more work, headache and heartache in the long run. Again, we're hearing all about what DH will not do, and it's time to help him figure out what he WILL do to help his wonderful wife out!
Wishing you the best of luck in dealing with this difficult situation and with getting DH to see YOUR side of things. Taking care of him is no easy feat!
I was told that I had no value unless I was doing something for others. If I ever put myself first I never heard the end of it. Now that I am divorced and the Mistress of my own destiny, and 5 years of therapy, I ask anyone who comments, how it could possibly be any of their business how I spend my time or money.
I still tend to over commit myself, but it for organizations I choose and whose values match mine.
I'm concerned about your initial question..."what right do I have..."?????
Is someone telling you that you have no right to be stressed or is that some antique ancestor who walked barefoot to school uphill in the snow both ways in your head?
You have EVERY right to be stressed!
Please hang out with us. You are valued here!
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Tacy, you've pretty much nailed my location. If you'd message me privately, I'd appreciate the name of the elder care attorney you referred to.
As to three hours being pretty skimpy, it's taken a couple months on a waiting list to get to this point. This county has a lot of elders -- retirees from downstate as well as locals -- and not so many people who want to work as carers (understandably).
If I keep posting, you'll see how long-winded I am. So I'll shut up now.
Thank goodness you have a job to go to.
Yes, take advantage of the 3 hours a week. Who cares if you husband does not want help. The fact that he is willing to lie on poopy sheets, means he really is not compis mentis. Perhaps the care provider can get him in the shower and get those sheets changed.
Have you looked into Bidet toilet seats? One may help with keeping his backside clean.
Could you get him into boxers? I know they would not absorb, but they could protect the sheets from poop.
I hope you are not sleeping with him in the mess. That would be a deal breaker for me.
Although he can no longer read, does he enjoy poetry audio books? That may keep part of his brain engaged.
Please don’t resist the idea of getting outside help. Most professional caregivers are adept at dealing with the idiosyncrasies of each client/household. To be certain, I would make it known to any potential hires so that there are no surprises. I’ve seen a number of cases where a loved one would let an outsider help when they completely resisted the family. I’ll keep my fingers crossed for you!
Having help for 3 hours a week is "nice" but sounds like a spit in the bucket compared to what your husband needs. I would look for more help ASAP. Or do as suggested above - tell him you need more help or he needs to do more or he needs to move into a facility. Something has to give here.
Dont let his refusal to be cleaned stop you from getting help. That may be what makes him decide to at least try to stay clean. Nothing like a stranger seeing your poopy bottom to shift attitudes.
I think that you need to tell him that you get help in or he has to go to a facility for care, things staying the same are not one of the options.
I get that his life must feel over, but he isn't even trying and he is taking you down with him. Time to make some tough decisions.