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.
I get it. It’s extremely frustrating to deal with people like your FIL.
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 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.
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.
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,
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.
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 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.
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?
You really have reached your limit! It’s tough going through this again.
Oh my gosh, I just saw a heartbreaking post. ‘Mom’s illness roller coaster’
Oh my word, Thanksgiving Day! Horrible!!!
You are correct, I can't back away or FIL will be in control of DH again.
I don't have it in me to put up with FIL in control any longer, especially since cognitively I can see it's only getting worse.
DH admits he isn't good at this. He'd just give in to him. Which is why I told him to limit contact.
Limiting contact may be your only option at this point because FIL won’t be able to pull your DH’s strings. Right now, he sees DH as his puppet!
Drank too much coffee earlier but I am tired and need to try to sleep.
You and I are meeting for the first time at Bingo today. It’s today. I’m bringing chipwiches for us. Caviar for Daisy. Wish we could have caviar too, but it has to go all to the cats: we shook paw and hand on it.
Will your DH go see a therapist?
I doubt he would go to therapy, it would mean having to talk . DH was raised to bury his head, feelings , and voice in the sand by his overbearing mother ( she divorced FIL a few years after we got married ). Like Mids DH , he is a different person when it comes to his parents . He needs courage to stand up to them or walk away . DH stood up to them when we were young . But he is finding it hard now because they are old and frail .
MIL is 86 and lives 4-6 hours away from us ( depending on NJ and NYC traffic ) and refuses to move from her two story condo . She needs a walker , won’t use one. She’s stooped over at about a 70 degree angle and has a drop foot from knee surgery gone bad and trips and falls . She is in denial and tells us she stands up straight when we tell her how stooped over she is . ( Next time I’m taking pictures and videos of her walking and showing her how she’s bent over from the waist ) . She bear crawls up her stairs , won’t move or get a stairlift. Won’t set up POA etc . (She says she has a will and that’s all she needs).
Still drives. She says she will know when she’s not able to drive anymore. DH’s aunt has called DH to tell him to take her car away. The aunt is in very good shape ( 10 years younger ) and told DH that his mother doesn’t brake to stop until she’s at a stop sign and she ends up stopping in the middle of an intersection . The aunt says MIL also has a lead foot and slams on the brakes ( which she has always done) .
DH has tried to talk to his mom about POA . She refuses but finally did put him on her bank accounts after multiple conversations about how someone may need to pay her bills for her should she stroke out .
DH solution for now about his mother is do nothing . He says without a car , how will she get what she needs. She lives with her partner who has early dementia and cancer and only MIL drives . Partner’s family is happy with this arrangement so they don’t have to lift a finger . They do have cleaning service come to the house. They say they don’t eat much. MIL has lost a lot of weight .
MIL has arthritis in her shoulders so bad that she admits the partner helps her with dressing . This came out because MIL’s partner did not want to fly to my son’s destination wedding . I offered to either help MIL or hire and aide . MIL refused and did not come . I witnessed that she can’t put on or remove her jacket . It has to be done for her , once on she can zipper it herself .
At times DH says to me she’s on her own , and let the state worry about her . Although I suggested to step back with FIL and let the state takeover but he said NO . Which makes me think when the mother finally calls for help , DH will run . DH has said he will not suggest to move mother near us in PA . Says he will try to get her in AL back home on Long Island when she lands in the ER . He said he should have left FIL in Florida and dealt with it long distance .
For now I’m hoping I can get DH to put up some boundaries and maintain them .
He just asked if he should call FIL to ask him if he needs anything . I said NO…..etc.
FIL has almost died 3 times in the last 6 months. We didn’t think he would still be here . Now DH thinks FIL will last for years .
I would agree with you . The next time I see MIL , I am telling her that her lack of planning should not be DH’s emergency .
But I suspect , I will get nowhere. Her way is the only way . She’s always been like that . I’m also thinking she may have a bit of dementia as well .
DH has said his mom is on her own , but he won’t follow through with that , he will help her . ( which means I will end up involved helping as I am with FIL . DH gets stuck at times and doesn’t follow through . ). I would prefer to avoid this since she is so difficult and just leave MIL up to the state as DH has suggested but it won’t happen.
Hopefully , she will live in an AL hours away from us . We think that would be best . DH does not think she will ask to move near us. I’m not so confident of that . DH also said he’s not moving her near us . I asked him “ how do you tell someone they can’t move to where they want to move ? It’s a free country .” He would have to just refuse to help , which won’t happen . Sheez.
DH also doesn’t think she will want to leave her ( our original ) home town and friends. But I know many of her friends have died , or can’t get out anymore . I also know she is jealous that FIL lives near us. She thinks he’s getting loads of attention that she isn’t getting from us . I think if she has to go in a facility she will want to move near us for frequent attention from us . We will see. So here we are in the “ wait for a disaster club “ for the third time . ( my Mom then FIL , now MIL )
In fact, I have an appointment with my mentor in a few minutes (a cat) (he comes highly recommended by another cat).
Hope all is well.
Hahaha, venting.
https://www.nyacp.org/files/District%20Meetings/Compromised%20Driving%20Ability_final.pdf
Years ago, when I had requests for this & that piling up from the folks, my son gave me a direct stare & asked "what age do you have to be to say no to your parents?"
Oomph! That hit me in the gut.
As it should! A wake up call!
I stared back. Then laughed.
I am old enough 😆
We discussed: In fact we are always old enough, it just depends if we are willing to meet the consequences.
"All reasonable requests will be considered"
This was our outcome & my new catch-phrase.
Avoid rehab to go home alone to have family be their nurses, aides & rehab staff? Nope.
Lift people in & out of cars because they refuse wheelchair taxi? Nope.
Provide 24/7 on call service to avoid getting home help? Nope.
Reasonable? Nope.
Rediculous.
Meanwhile, update from my mentor (he’s a cat) on self-care. He told me the exact same thing Hothouseflower just posted:
“Go out and live your best life.”
If you ever check in on the site. Please know that we miss you!