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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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Absolutely tell him. Not many people can tolerate unsanitary dirty etc. Those are very basic expectations. You are not asking for something unreasonable.
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Reply to Evamar
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It’s appropriate to tell dad that he must be washed and diapered for you to take him anywhere. And it’s appropriate for the Al management to inform both of you in the same room that he cannot keep living there if he refuses help in cleaning himself up.
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Prayers sent.
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DeniseV Dec 4, 2024
Thank you, Llamalover47!
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Thank you so much for sharing your experience and dilemmas. First of all, I am so sorry that you are experiencing all of these challenging situations. I will find the advice from others helpful, since I am also seeing many of the things you mentioned, including wearing dirty clothes, though dad and I currently live together (which adds to the stress). He recently relented to wearing the disposable underwear at all times, after having accidents (from one end or the other) three or four days in a row and describing them as "I'm not sure what happened, it just came rushing out." He didn't even recognize the diarrhea or loose stools one day wasn't urine. I've also started reminding him to try and use the bathroom every couple of hours. He stained at least three dining room chairs already with urine accidents and didn't even notice. My fear is that he will poop on the couch (and I probably need to get covers for it). He also refuses to use a napkin unless I hand it to him, and then he gets annoyed. That means he eats greasy food and touches things all over the house. I had no idea how bad his dementia was when I suggested we find a place together earlier this year, though I knew he needed help. Sending you strength and hoping both of us can find our way on this journey of caring for a parent with dementia.
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DeniseV Dec 4, 2024
Thank you marygIndiana! And wishing you and your dad love and peace!
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Im Not trained so take with a pinch of salt ok
right - so your father was severely embarrassed and upset at not being able to go to then loo? It wasn’t just getting up was it
to address with Doctor light laxative drinks
support bar needed near toilet

he was prob more angry with himself than with anyone else and he is aware of his decline further adding to the problems
so help needed with support and possible constipation - a common issue with elderly

As for him coming to your house
I would say sure dad as soon as you start looking after yourself
so let’s start now and go fir a clean up

my dad went thru a lazy stage - mixture of laziness - the effort it took and maybe depression/acceptance of his decline. I recall one day saying you need a wash dad you’re smelling
and he replied so what I’m old!
I actually told him no excuse and it’s just being dirty and I was setting some water
we got my dad a bowl and put some nice warm water in it with a little disinfectant and liquid soap and a flannel and we help him wipe down then leave the room for him to wipe private areas then return to help him put clothes on
it all helps
My dad objected at first then got into a routine - sometimes would say he’s not dirty and we’d say no - we wash daily
he then admitted he nearly fell in the shower
so stopped using it. We got a plastic chair and put that in the shower fir him to sit on and made him change into a clean pair of boxer shorts
then we helped wash him
left the room or turned our backs for him to wash private’s then helped him dry - lifted towel high so he could take off wet boxer shorts and dry and then we helped him dress
pulling new boxer shorts ( in continence ones )up to knee
then all ge had to do was pull it rest if way up
the profess started getting faster
Showers at intervals but wipe down daily
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DeniseV Dec 4, 2024
Thanks Jenny10! I'm glad that worked for you. Brilliant move on your part. May God bless you all!
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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 Dec 4, 2024
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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I'm so sorry. His mind is NOT better than his physical body. If it were, he might still be incontinent but he would be bothered by it. He'd be upset if he had to sit in it. He'd allow someone to help him, even if reluctantly. This behavior is either dementia or mental illness (dementia being more likely).

If you believe he's thinking clearly, tell him you cannot allow him to help you cook (cook!?) unless he cleans up. It's unsanitary, unhealthy. I wonder what he'll say, if his answer will be reasonable.

Your grief and exhaustion are so apparent. Hopefully you can get him to the doctor soon and in a more appropriate placement. Probably best to put off taking him anywhere by yourself for a little while. I hope things settle down for you soon.
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DeniseV Dec 4, 2024
Thank you iameli. You are right on all counts! 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 Dec 4, 2024
Thank you Tiredniece23. Dementia sucks. May God bless you and your aunt.
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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 Dec 4, 2024
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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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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DeniseV Dec 4, 2024
Thanks Fawnby. Your comments are appreciated.
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The state I live in his about 5000 adult family homes, some of which will take the $50,000 spend down of assets to Medicaid. All assisted living, memory care and adult family homes subject to state audits regarding the six ADL's, incontinence one of the big six that gets audited as untreated it leads to more issues with hygiene, bed sores (which might lead to skin organ failure, an extremely painful way to die), sepsis (not a pleasant way to die), UTI's, etc. I would start shopping around for Adult Family Homes that will take him in and get this under control before all his money runs out, and get him to a place that deals with dementia, and men. I would not trust any eldercare communities to be ok with having this be out of control as they can get shut down for not dealing with incontinence. Denial the first step of the grief cycle, is it possible you are still grieving over your mother? I don't mean to alarm you but incontinence, being mean and refusing to self care a serious sign of decline in dementia or senile aging of the brain decline, possibly into the middle or heading into 6th or 7th and final stages. Make sure wherever he goes to count how much money left and ask what happens if he ever gets full blow throwing chairs violent as that might mean he has to go to the geri psych ward and might get booted out from where he lives. Try to find the last rodeo for him because it is not helpful to the family nor the checkbook to keep changing his home setting at this stage. The meeting will probably involve having a negotation about how he needs full blown memory care or it might get reported that he is refusing to care for himself as they have to cover themselves. I work in hospice and just letting you know they might also suggest hospice for him as hospice does some great end of life support comforts for late stage dementia, and helps the family cope with grief and difficulty of end of life. I don't mean to alarm you saying hospice but some people go on services with hospice for a couple of years off and on services.
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DeniseV Dec 4, 2024
Thank you Penny Ames. I appreciate your comments. You raise valid concerns. 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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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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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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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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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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