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Oh boy, do I need some words of wisdom from this group. I've been helping my parents for about 7 years, with each year bringing me more responsibilities. I've been their POA, handling all finances since then, too. I also participate in their healthcare. I made medical decisions for Mom, but not for Dad, although he lets me take him to doctor visits and stay with him. I even get to talk a bit. I also get to fill his pillbox!
My 95 YO mom passed about a month ago. I moved her to Memory Care late-August and she died October 31. I applied for Medicaid for Mom when she moved to MC...a very time-consuming process. And a few months prior to that I secured a small pension benefit from the VA for my 95 YO dad...an even more time-consuming process! My parents were married for 73 years.
Mom was on Hospice for nearly two years and the last year of her life, I practically lived at their AL apartment as her dementia progressed and after a stroke that left her unable to walk. Please know, however, Mom's personality never changed. She was sweet right up to the last days of her life. I was totally burned out and was able to take a few week-long camping trips with my amazingly supportive hubby this past summer. Once I moved Mom to MC, I was hoping to breathe a little easier. Well, that didn't last!
Dad has grown nastier and nastier over the years and I am at my wits end. I think I could write a dang book and I'd still be leaving stuff out, so I'll cut to the chase about him.
Over the past year, Dad's incontinence has gotten really bad. He lives in AL (still pretending to be independent) and refuses all care that I've arranged for him. He won't take showers. He won't let them help him with changing his clothes. And he won't let me help him, either. He gets angry about everything. I brought him home for Thanksgiving and it went pretty well, until he couldn't get up off the toilet by himself. He yelled at me and my hubby to leave him alone. So we did. After about 5 minutes hubby went back in and offered help, which Dad accepted. I took him right home because I didn't want nasty pants on my furniture.
I visit him daily - try to go during lunchtime so he's eating while I'm there. Today, he told me he wants to come to my place to make one of his favorite meals with me. I don't want him over because of his soiled clothes...yes, I can still handle his meanness, but I can't handle unsanitary!
My thought is that I tell him he can come, but he must take a shower and change his clothes or he can't visit. This is going to hurt him and there's going to be a lot of yelling. Is there a nice way I can tell him this...I can be as stubborn as him, but I really don't want to fight or yell. He's my dad and I love him - I used to be daddy's little girl and now I'm just a bossy daughter who thinks she knows more than him (in his eyes).
Also note we have an upcoming meeting with care coordinator and wellness director. I hope he will be nicer and more cooperative with more people in the room. I really want them to tell him he must give up his dirty ways. Can they do that for me?
I think he's depressed but won't admit it. I also think he has a bit of dementia, but overall his mind is way better than his physical body. Doctor thinks Dad may have signs of Parkinson's but he doesn't want a referral. Dad's memory is still really quite good, but he's fallen 4 times this year.
I need a few of you experienced caregivers to smack me back to reality. What are your thoughts?

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Yes to all-disposable briefs all the time. Yes to anti-depressants. Also, stop visiting him every day. This is preventing him from socializing on his own (which he may not do anyway, but you don't need to be his entertainment committee). Your being "helicopter" daughter is causing your own burnout.

About dementia: by time close loved ones start seeing regular or daily behaviors (stubbornness, nastiness, lack of hygiene) they are already in moderate dementia. He needs to have a medical appointment to give him a physical to check for Parkinsons and dementia, and in many cases this physical is required before his primary doctor prescribes meds. You may need to concoct a therapeutic fib in order to get him to go (Medicare requires an annual wellness exam, which is actually free, whatever).

He may now be a candidate for MC so please start bracing yourself. Getting him an accurate diagnosis and meds for depression will help if this transition is near.
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southernwave Dec 1, 2024
100% agree about the hovering helicopter daughter behavior
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Replace all his underwear with disposable briefs . Get him on an antidepressant .

Don’t take him back home unless he allows staff to help him with showers and incontinence care .

I went through the same thing . I stopped taking LO’s out due to this . No home visit a or out to restaurants .

If he doesn’t comply , assisted living will not keep him there once other residents or families complain about the odors , or possibly even sooner .

Then memory care would be needed next. Yup , Dad’s not liking being told what to do from his child .

Tell him if he doesn’t comply with hygiene he will have to leave and go live in a nursing home. And yes , ask the facility to speak to him as well . They will do that .
Good Luck .
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DeniseV Dec 1, 2024
Thank you waytomisery. I appreciate your comments. This is a tough one for me. I literally just got my mom's ashes back from crematorium yesterday. I've been putting off writing my concerns on this form for several weeks, but somehow having my mom's ashes helped me to reach out to the people who would be able to push me to action. May God Bless You.
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You are very smart and very experienced and I think you know that your Dad no longer HAS choice in this. He has progressed too far. So this is where it gets messy.

This doesn't sound like depression, but does sound like dementia.
All throughout your note to us I was saying to myself over and over and over again "WHAT KIND of ALF allows THIS to go on; this is improper placement".
Your father now needs assessment; he is not competent in his own decisions. He needs either memory care or nursing home and almost certainly medication. He needs good 24/7 care and he cannot be in ALF. That isn't fair to their other clients. I cannot imagine what level of care he has risen to? Because it only goes to four and he's way beyond that.

You really are more intelligent, more aware of how all this worst than 99 44/100ths of our posters. I think you know your father no longer can make his own choices, needs a thorough neuro-psych evaluation, and needs to progress in placement.

I am so sorry. What a crucible of care you have been through, and what a crucible of life your parents have had to negotiate.
I wish you the best.
I think you know right now today where this "meeting" is going. You are going to be told that he is no longer suited for ALF care. So at least I think that's set in your head. The rest is the neuro-psyc eval, the placement. I am so very sorry.
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DeniseV Dec 1, 2024
Thank you, AlvaDeer. Your suggestion for "needs a thorough neuro-psych evaluation, and needs to progress in placement" is well-received. Talking to his MD tomorrow and requesting referral. As for the AL, my parents have been there for over 4 years and Dad was doing quite well until my mom started really going downhill last year. When we moved Mom to MC, he was over there every day (after breakfast until after dinner). Things have gone south for him really quickly...just about a month. I have confidence in Dad's doctor, the AL and MC. I just hope we can move quickly now. May God Bless You.
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My dad is in a similar situation. I'm struggling trying to fully convert to disposable underwear (one method that has been mentioned, but I have not done yet - just go in, take away all undewear, and in their place put only disposable underwear).

They likely have laundry service at the AL, ask them about the frequency and if they are able to keep up with his dirty clothes and if they are able to change his clothes regularly. You may need to make sure that he has at least 7 days supply of clothes if its weekly laudry, whatever that amounts to

As others have said - a move to MC may well be needed soon.

As for coming to your house - I suggest to be firm with your requirements, dont compromise whatever is your rule. "My thought is that I tell him he can come, but he must take a shower and change his clothes or he can't visit" - tell him this and enforce it. If you go to pick him up and he hasnt done that, turn back around and leave without him.
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DeniseV Dec 1, 2024
Thank you, Strugglinson. Your comments are well-received.
I hope challenges with your dad are minimal. Praying for you both.
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I’m sorry to say it but if your dad will not change his soiled cloth underwear he will not change his soiled disposable underwear either. You can take away all the cloth and supply him with stretchy, pull-ups but they require the same physical flexibility to take them on and off and the cognitive ability to know how to do it, when to do it or even to understand that he should.

I don’t think this is just your dad being cranky and uncooperative so setting him off by telling him his visit depends on him being clean will not be useful. Not all kinds of dementia manifest in the same way. This is no longer about what dad wants, it’s about what he needs to be safe and healthy for as much time as he has left.

I’m so sorry for the loss of your sweet mom and now, this. It’s so much for you to handle in such a short amount of time.
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DeniseV 5 min ago
Thank you for your kind and honest words Peaceup. It is a dilemma and my little brain can't take much more. May God bless you!
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I understand what you're going through with the incontinence and refusals to take showers or sponge bathing. My aunt is the same way. She will get angry if you offer to help her with bathing/showering. She tells fibs that she's bathed herself, and you know it's a lie because you smell her.
We got her in Depends, but she will rarely change them herself. I once walked in and saw her asleep with the Depends down to her ankles. She tried, but fell asleep.
The anger, the denial, the incontinence. Like you, I can ignore the anger and meanness. What I cannot ignore is the unsanitary condition of her home, which is one reason I haven't visited.
I have no advice, except to let you know that I understand. Dementia is horrible in watching our loved ones change before our very eyes.
Also, sorry for the loss of your mom. It's a lot to deal with and I wish you all the best. 🙏🏽
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DeniseV 7 min ago
Thank you Tiredniece23. Dementia sucks. May God bless you and your aunt.
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I am sorry you are having such a rough time. It sucks.

I don't have any better advice than anyone else. I have been blessed that my mother has remained pretty happy and easy to deal with so far. I just wanted to chime in my support for you.
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DeniseV 17 min ago
Thank you, Lovemom1941. My mom was so sweet and agreeable for the most part. I miss her so much. May God bless you and your family.
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Think of Dad as a small child because everything you discribe about him screams Dementia. Agree to take him to your house if he cleans up and allows the aid to help. Full top to bottom. Make sure DH is there if you have problems with him going back to the AL.

His clothes probably need a good washing like more than once. There are products out there to take out smells. I wash in Tide original and found it cut smells better than Arm and Hammer did. I soaked Moms slacks in vinegar before washing. I never put them in the dryer because they were polyester and the dryer brought up the smell. Spraying vinegar on the underarms of shirts and letting sit before laundering may take out stains and smells. Yes, time for Dependsvidbhe is not wearing them. Another thing he needsvif coming to your house.

He needs to be evaluated. He needs labs to make sure its not something physical causing his problem. An AL may not be the place for him now he may need MC too.
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DeniseV Dec 1, 2024
Thanks JoAnn29. I add Borax to the laundry and that does the trick. Talking to doctor tomorrow and see if we can get a referral. This AL facility also has MC, so I can get him to the top of the waitlist. May God bless you.
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There’s no telling him this or that because he’s beyond being able to understand. As others have said, this is almost certainly dementia. I don’t agree that his mind is better than his body. His failing mind (brain, cognition, whatever you call it) is causing his body to fail - the falls, the incontinence, being unable to get off the toilet.

I’m so sorry. I know this is hard on you. It’s time to accept what’s happening and understand that he can’t be as he was before. You can’t make him better. I wish you luck in finding the right guidance toward placing him where he now needs to be.
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Do not take him to your house anymore and stop being so available to him.

He is very clearly at the end of his time in assisted living and at the meeting they may very well tell him he is getting evicted.
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DeniseV Dec 1, 2024
Thank you southernwave. Yikes I hope not evicted!! I will get him evaluated...talking to doctor tomorrow and see if we can get a referral. This AL facility also has MC, so I can get him to the top of the waitlist. May God bless you.
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