Hi all.
I’m so worried about my partner. He has to contend with such a lot. Firstly, his 85 year old dad has been in hospital with infection and confusion. He’s out now and improving - looked after entirely by my partner who lives with them.
His mom is showing signs of dementia - she constantly nags him to do the same paperwork - usually renewing car tax or insurance - which has already been done. She won’t be reassured and keeps needing to check. This has been going on for 18 months getting steadily worse.
She forgets who her husband is regularly and is, at times, verbally abusive towards him.
My partner has been so incredibly patient with them, he’s so kind and caring - perhaps has some level of denial that both his parents are struggling in this way. He tried to see the bright side every day, even when his mom constantly nags him - she constantly interrupts our phone conversations, always in the background asking him to check paperwork. His mom also refuses to believe she has anything wrong and won’t go to the gp. I think there is some aspect of ‘show timing’ as she can perform for visitors. But I’ve seen the other side - her constant checking, forgetting what she did an hour ago but remembering in depth about her childhood. I am not sure how to support my partner other than listen and cook for him when he gets chance to come to mine. It’s so hard to see. Any advice would be gratefully received.
Where is his mom getting all this paperwork that she's nagging him about? I hope he is actually the one handling all this type of financial work for them. If not, it's time. And, poof!, the paperwork disappears and she does not need to see it and worry about it and bug him about it all the time. Of course, she will obsess about something else but it might be nice to have a break from this type of thing.
She definitely needs an evaluation. When was the last time she went to the doctor? He may have to tell a little, harmless, white lie - Mom, the doctor says you need to go to see his today. It's been too long.
She may not like going, but that's OK. She could benefit from some blood work and determining if there is anything besides just good old dementia contributing to her behavior. I wonder if she has some anxiety, apparently, and could be helped with a med for that.
Is the dad still capable? Once he's more recovered, does he help with the mom and do anything around the house?
So now your partner needs to start taking care of himself. He needs to hire some help for his parents, with their money, ASAP. He is going to burn out. Caring for 1 high need parent is more than enough, but 2 will cause him some serious issues. He can do the simplest thing to start with like hiring cleaning people. Getting as many things as possible delivered to the house to cut down on errands. Though he should have someone who can be their sitter, under the disguise of being a "maid" if needed. The helper can try to do light cleaning, laundry, etc. And your partner can take you out for dinner!
Is your partner the PoA for either of his parents? If not, first and foremost he should work with his Dad to get this done in order for him to legally be able to act as his Dad's advocate. Sounds like his Dad has enough cognition to do this, so he should do this first. After this is completed, he should help his Dad go for a physical (and your partner should be in the room during the exam). Your partner need to request the Medical Representative form at this visit and have his Dad designate him as his MR. This way your partner can exchange info with his medical team without his Dad needing to be present. They won't talk to your partner without your Dad being present if this HIPAA form isn't filled out. At this same exam your partner should discretely pass a note to the staff requesting a cognitive exam for his Dad so that there is at least a baseline measurement in his records.
Then, there's his mom. If your partner is her PoA, then he needs to tell her a "therapeutic fib" in order to get her into the doctor's office for a cognitive/memory exam. He can tell her it's part of the requirement for the "paperwork" she is always wanting him to fill out. Then he does what I suggested above with his Dad to get a record of it in her medical files.
If he is not PoA for his mom -- and they have the financial means -- he can pursue guardianship through the courts. It can be costly. The only other option is for the county to step in for guardianship. Please know that there is no legal pathway to make decisions on behalf of someone, or manage their affairs, unless there is an authority granted through our legal system.
if your partner thinks his Mom can comprehend what a PoA is and does (she doesn't have to remember it -- just understand it), and your partner has no other siblings or relatives who would ever contest a newly created PoA for his mom, he can go through Legalzoom.com or Rocketlawyer.com to get one completed with her (he will still need to take her to a notary and sign it before 2 non-family witnesses to make it legal). Don't listen to anyone on this forum who tells you to never do it this way. My mom has done it this way, as she is single and I'm an only child. It is working just fine for her and it was way more affordable, fast and convenient than going through a lawyer. If it means it allows your partner to help your mom better, then he should consider this.
Educating himself to dementia needs to happen. You should watch some Teepa Snow videos on YouTube -- she's an expert in this field and gives very excellent layman's explanations of what dementia is, how it changes our LOs, why they behave the way they do, and how to better engage with them as caregivers so as to make it the least stressful. After you watch a few, then you can recommend he watch them because they were so helpful.
Dementia is a progressive disease. Your partner has to work hard now to get on top of managing the poop show because it won't get better and it won't stop. He may want to consider touring some good, reputable facilities (without his parents) so that he sees there are many very nice ones. He should consider consulting with a Medicaid planner, to make sure his parents can qualify if/when they need it (and many, many elders do because they live so long they outlive their retirement savings).
Your partner is part of a vast fraternity of caregivers who have been in his shoes. I'm hoping he will "go to school" on the experiences of others so that he doesn't burnout unnecessarily. Bless you for helping him!
Hubby and my SIL were in denial a long time. I could see big, giant, red flags waving everywhere, but they had to be ready to deal with the problem. As I’m sure you know, it is a degenerative disease and will not get better on it’s own (sometimes medication can help, but only temporarily).
Start by pressuring your partner to get help. I don’t know about where you are, but in my area there are geriatric outreach teams that come to your house. There are some exhausting intake forms, cataloging her life and overall behaviors and problems. As they’re in the house for over an hour, they will also write down what they see. She will only be able to pretend so long. There is also a cognitive memory test that the psychometrist came and did with her. The score is out of 30. Anything less than a 27 shows memory loss and cognitive function loss. MIL was scored a 16…
I think working on getting a diagnosis woke both my husband and SIL up to her ability level, which they had become accustomed to and didn’t want to rock the boat. I kept warning about the dangers until they started to do something. Ultimately, she’s their mother, not mine, so I could only push so much.
Your concerns are spot on. Keep talking to your partner about SAFETY. What happens if she leaves the stove on? Sets a fire by accident? Falls and can’t get up? Wanders off? These dangers are real and likely if left ignored.
Keep supporting your partner. You’re doing an awesome job!
https://www.alz.org/alzheimers-dementia/what-is-alzheimers
How long have you been together?
How long has he lived with his parents?
Does he think there's a problem?
I ask these questions because I have the impression that he is used to the set-up, but you are comparatively new to it. What changes would you like to see?
its very hard to see someone you love struggling to cope. That’s why I’ve reached out on here.
Thanks again.