Not really a question, more of a rant. But any thoughts and suggestions are appreciated!!
So FIL who was widowed a year ago April is in AL with dementia, He is miserable, refuses to socialize, thinks he doesn't belong there , refused care, yada yada. Finally is showering 1-2 times most weeks, last couple of months with or without help depending on his mood, but still does not change his pullup often enough and refuses toileting schedule.
This past month has expressed that he knows he is declining. He has been in the hospital 4 times since December with acute on top of chronic respiratory failure. This time he is also in CHF.
The man despises rehab and PT. The last time was this past April. And he did improve , but has been declining again .
Last night he said he does not want anything done , he is too tired. In my head I agreed that he is probably too weak for rehab and was thinking of palliative care in SNF.
Went to see him this morning and FIL was back to "denial" about his condition. He said the doctor said he needs to get stronger. FIL thinks that means he just needs a few more days before he goes back to AL. FIL just wants out of the hospital. He did seem better today, but I doubt he can go back to AL before going to rehab. I also think its questionable that he would do well enough to return to AL at all.
It is so exhausting for all (Including FIL), this back and forth every other month with the same chronic problems. At some point DH who is POA will have to make the call as to how much is done and when to just let FIL rest.
But when that is , is a tough decision again. It was much easier when he was doing more poorly and FIL himself saying not to do procedures etc. FIL is a DNR, which he is still adamant about.
Modern medicine keeps bringing him back from going over that edge, where we would all say for sure let the man rest. It seems so cruel to put this man through rehab again and again , just putting off the inevitable.
It gets complicated as well since FIL has some lucid moments. It would be much easier for DH to say "Stop , let him rest." if FIL was less verbal or less able to make wishes known. But his wishes are often unrealistic as he is not always aware of how ill he is. Last time FIL was very against rehab, but did it to avoid SNF. I doubt he remembers that he wasn't allowed to go back to AL if he didn't do rehab. We may be headed for the same ugly scenario , as he thinks he can go where he wants" so long as he pays the rent".
So now what? how many times does this happen until DH decides that FIL should just rest in palliative care in SNF no matter what he says? Maybe FIL won't be well enough to get back to AL, we will see.
How common is it for elderly people to resist changing soiled pull ups? Or soiled clothes? We seem to see this situation on the forum quite a bit.
Do they lose their sense of smell and don’t they find it uncomfortable?
Way, did you see this as a nurse?
"I also wonder how much of this is dementia and how much is stubborness and or mental illness."
Bottom line is this:
You advised no blank checks.
Hold firm.
You advised the consequences of refusal of care. Done.
I would normally say have this chat at least 6 times.. to let it sink in.. but you've been there, forwards, backwards, sideways, upsides already.
Been there, got that T-shirt 🤣
"But I don't sit around with wet pants" as they indeed sit there in wet pants. Embaressment. Denial. Conscious of it or not. Who knows. Actuality the internet does..
Diogenes syndrome, also known as senile squalor syndrome.
I didn’t realize that you did that much. I thought you only picked up the slack when your husband traveled.
Then, you have even more reason to be upset about this situation. It’s too much for both of you to be dealing with.
It’s probably a combination of dementia and stubbornness. Plus, he’s struggling with losing his independence which is hard but it happens to many people as they age.
Very few people retain complete independence in their old age.
I agree,
In actuality though, other than the financials, I've been doing alot as well, at least half of whatever FIL needs. DH usually defers the medical stuff for me to deal with also. Plus DH is away for work sometimes. So I am also burnt. After looking after my parents for many years, I don't have the bandwidth for FIL stubbornness. And , he isn't going to change. This is how he wants to live. I give up. It does not make sense to bang our heads against a wall when this man is a hopeless cause. He refuses psych eval or to talk to psychologist etc.
I also wonder how much of this is dementia and how much is stubborness and or mental illness. You are correct, he is not in reality. He is in denial and very manipulative. He has been obsessed with saying he's independent and doesn't belong in AL since before he got there.
Absolutely! You do need your lives back and to share joyful moments again.
It is devastating to lose yourselves due to sacrificing everything for a parent. I went through horrible depression which can cause feelings of anger and frustration.
I believe that your husband is feeling a lot of complex emotions.
Think back to when you were dealing with your caregiving experience. You dealt with your situation with your mom and so you know how hard it can be.
Also, acknowledge that each of us will process these types of difficulties differently.
We don’t always see things clearly when we are in the middle of it. You are on the outside and are able to look at this situation with your FIL more objectively than your husband is able view it.
Your FIL is taking advantage of your husband’s vulnerability right now. He’s quite manipulative. I do think he’s in denial. and unaware of reality but boundaries still have to be placed in order for you and your husband to have your life restored.
I agree. DH is stuck. I've been asking for months to see friends, go out. We have no life. He just sits at home , and lately in a bad mood. He says it bothers him to see is father like this. I told him , I don't see it changing. He's been like this so long. I told him if it bothers you , don't visit as much.
He says he will try what I said. I told him I'm fed up with FIL. Let him rot. He will not change, or accept help. Don't even talk to him about it any longer. Leave him be. This is how FIL wants to leave this world. Thinking he's Independent ( but dirty) . We need our lives back.
I have to be totally transparent and share something that really hurts me to this day in hopes that it will help you.
I was blind, just like your husband. I was so overwhelmed and confused.
I love my husband with all my heart but I had developed a very unhealthy relationship with my mom.
Codependency doesn’t even begin to describe it. My oldest brother hurt my parents so badly.
Then my brother died! It broke my heart to see my mom bury her first born son. I think somewhere in my mind I felt like I had to do all that I could for my mom because she was so deeply hurt by my brother.
I swear to you that I was not intentionally trying to neglect my husband, but I know that I did neglect him and hurt him. I deeply regret it.
My husband was supportive of me and of my mother too but it was normal for him to become sick of the way things were. It started to affect our marriage and I am so thankful that he didn’t divorce me.
I am glad that he got fed up enough to tell me that something had to change. I ended up in therapy to talk about my feelings and behavior.
Mom’s started to change due to her developing dementia. She was becoming harder to please and started playing my other brothers and I against each other.
I ended up telling her to go live with my brother. She was with him until she entered her ‘end of life’ hospice care home.’
My brother started to see what I was dealing with after he had mom. He apologized to me for not understanding my side.
I just told another poster who is having issues that her husband needed outside help (therapist) and maybe your husband does too.
Your DH needs to figure this out because no one is benefiting from his silence concerning your FIL.
FIL can’t keep getting his way! You’re right. He has had his time to enjoy his retirement. Y’all should have your time now.
Wishing you the very best, Way.
Fast forward to last night. Last night DH decided he was going to bring checks up for FIL to write the 2 grad gift checks out for step grands that he wanted to write out. DH felt if he did this , maybe his father would comply better with care. I said he's never going to comply with care. I dutifully went to the dollar store ( while DH finished at work), to get two graduation cards and I tagged along to see FIL to make sure DH did not get talked into leaving blank checks and FIL getting his way.
We walked in and FIL says to DH, "Well I refused care and they didn't throw me out." He had the biggest grin on his face when he said it and started to laugh. I said , "Its not funny, all that means is that you sat in pee all day again in your diaper". Yes I said diaper this time and don't care. The man was mocking us , Basically saying screw you, I got my way and refused care again. Which went over DH's head. I had to explain to him later. DH can not spot this man's manipulative, passive aggressive, personality disorder that I think he has.
Then DH told FIL that he brought checks, and grad cards to write out. FIL said I'll do it later. I gave DH a side eye. DH said let's do it now so I can mail them . FIL said to leave them on the table. DH was caving in. I said "No , blanks checks can not be left," FIL would not look at me. ignored me . DH said , Dad we can't leave the checks. FIL still refused. I said " Let's go" to DH. DH told FIL to call him if he needs something. We went home. I couldn't believe that DH almost caved, he said , he can't be bothered arguing with him . I told him , if that's the case and he can't tell his father "NO" he should give up POA. He of course said he's obligated to help him. I told him that he is not. Went to bed, neither of us slept well.
Today, was spent trying to convince DH that he has to just let FIL sit there. I said do not go see him. Let him call you when he really needs something. I told him we went up there with checks and it was a waste of our time. Now FIL will have to wait. I told him if FIL brings up anything about how he's getting away with not accepting care, to say you are not discussing it. I said I wouldn't discuss anything . Just drop off what he needs and leave. I told him other than the check business, he doesn't even have to see him. He can have a staff member bring him whatever you are dropping off. I had to do that with my mother at times.
I told DH , never to discuss care with FIL again, not after the way he mocked him over it. Let him rot. If AL calls again , tell them to deal with it or kick him out. I also told DH that FIL kept refusing to fill out those checks because he was wearing you down to leave the checks to get his way. I'm beyond angry now.
I get it. It’s extremely frustrating to deal with people like your FIL.
My FIL t shirt would say
Entitled A**
Abusive
Spoiled
Selfish
What would your FIL’s t-shirt say?
Venting. Yes, add hats too! Maybe cute socks as well.
When you make a profit you can add jackets!
My Hat: Sensible written on one side, Silly on the other.
Gives options 😉
Hopefully some people can look in the mirror, have clarify to SEE & TURN their shirt, hat & decisions around...
How much longer?
Hey, if someone asks, ‘What?’ You can just smile!
” I should be on a break “
Good one!
And ‘No Way!’
I can’t possibly do that! is another one.
Are you crazy?
You’ve got to be kidding!
Hey, we don’t have to be politically correct all of the time! 🤪
Sit Here! 🤣 Very nice, Way! They can have matching totes!
How about this t shirt ?
NO…..JUST NO !
How about waterproof recliner pads for LO that say “ SIT HERE”
When are you going to open up your t-shirt shop?
Way gets the first one off the press!
Hers is, Done!
Mine is, BeenThereDoneThat!
DH - Mine and Way’s is, I have hit my threshold of pain!
What’s yours?
Ask for other sayings. I’m sure that there are plenty that you could make!
Way and I get a discount! 😃
Husbands get a discount too!
You can also do lower priced items like key chains and tote bags.
Order a t-shirt for your husband that says.
I HAVE HIT MY THRESHOLD OF PAIN!
You can wear your favorite t-shirt.
DONE!
https://www.delish.com/cooking/recipes/a48612/giant-chipwich-cake/
My husband is the same way. He is Mr. Chill but when he reaches his limit, he will say something. Your DH might end up saying something.
You know my husband’s expression when he has had enough. He calls it his, “threshold of pain!”
We will see. I think DH will just try to hobble along with this though, tread lightly as much as possible , and hope for a quicker ending .
DH is non confrontational .
I don’t see him walking away at this point or going to court for guardianship . I will keep encouraging minimal visits .
DH doesn’t owe this man anything . DH was thrown out of the house when he was 21 and still in college . DH parents were trying to get rid of me because I was not raised the same religion as them ( we were engaged ) . We ended up eloping . Not much contact after that . FIL is lucky we do anything for him .
As far as I’m concerned , FIL gets what he needs , not what he wants.
It seems to me that are two options here: guardianship, which requires the courts to declare FIL incompetent (which he would fight) and walking away.
Clearly FIL is mentally ill and needs a higher level of care. But as you state, he is crafty and capable of showtiming. He might end up with a determination of competence and the ability to run his own show.
In DH's shoes, I would step away, call a lawyer for advice about to resign POA in such a way that doesn't amount to abandonment and let FIL and the facility figure things out.
They in turn will probably send him to a hospital and refuse re-admission, leaving the hospital discharge team to place him appropriately or send him to a shelter if he refuses.
He may show up on your doorstep, in which case you call 911.
Have you read Liz Scheier's Never Simple?
Yes , I know he has anosgnosia.
He has been on an antidepressant for many years and has refused med changes . He says “ I know what works !! “.
FIL was told by the doctor last year that he has dementia . FIL blew up and said his “ mind is as good as ever “ . He insists he does not belong in assisted living . He insists he does not need help and that his “underwear is not wet “. He believes so long as he refuses help from the staff, he is independent . On rare days he is more semi lucid . Yesterday was not one of them .
FIL has refused to go see a psychiatrist, or neurologist . He says they are trying to lie and say he’s “ incompetent “ , and the facility’s philosophy is to take his independence away “. He looks at it as him against the facility trying to take his freedom away . A psychologist that comes to the facility talked to him , FIL kicked him out .
FIL believes they are wrong and that he is independent and does not have dementia . He keeps trying to prove he’s “competent and independent” .
IMO , there is no hope. My narc mother (now deceased) had vascular dementia and was very similar . Nothing worked with her either and the geriatrician I took mom to told me nothing would work due to her narcissism . She didn’t even advise a med change . My mother used to talk to a psychologist for awhile at her AL until she found out/ realized he was a psychologist . Then she said she’s “not crazy “ and refused any more sessions .
FIL is just as stubborn and has a very high opinion of himself . My mom was in a different AL than FIL . When Mom got worse , I was given 30 days to get her out of her AL for the same reasons as FIL, uncontrolled incontinence , refusing showering , extreme odor to her and her room.
We told FIL it may come to that . He may be kicked out , but we have told him that in the past as well .
DH came out of his ( home ) office a bit ago. Spoke briefly . I suggested severely limiting visits and phone calls. Just drop off if he needs something , which he shouldn’t need anything this weekend , we just did shopping .
DH emailed the executive director to let her know we talked to him , but FIL is in the same broken loop that they ( the facility ) think he’s incompetent and that he does not need help . He says “they want to take my independence and freedom away “.
DH agrees this is the last attempt . Let AL deal with it , let him rot or kick him out . I recently again suggested trying a different med , but the PA that is his primary at AL says she does not want to give him a different med yet that may cause him to fall . His walking is very unsteady .
It's the technical term for the lack of understanding of his own condition that I believe FIL has.
Has he been seen by a Geriatric Psychiatrist? Is he on any psych meds?
I will suggest it
Thanks
I think it will be good when FIL's dementia gets worse so you won't have these long and protracted battles with him about giving him his checkbook, credit cards, driving, etc. It's harder when they have these lucid periods and you have to wage WWIII with them about simple things like money or changing their diapers and bathing.
On the plus side greedy grandkid's mother is officially cut off from the purse strings now. I can bet her visits will get less and less now that she knows she can't keep getting money from FIL.
Sad that all the memories that will be left for DH once FIL passes is relief once the anger and resentment subsides.
Will DH resign his POA?
Can he simply tell AL "I have no sway over him. Do what you need to do"?