How can we talk to my dad and help him understand he needs help - we're just starting this journey

katemahercsu

My mom is now starting to show show signs of dementia after several years of memory loss and early stages of Alzheimer's. Which we knew was coming, but my brother and and I are recently learning more finally getting permission to access medical records.  After talking to my mom's dr.  I also learned that he has been repeatedly been telling my dad - who is the "caregiver" for my mom to get on a waiting list for a memory care facility. That the day is coming when he will need it. But my dad doesn't share this information with us. I've been discovering more and more, but not from my dad. i.e. mom forgot where she parked - but he still lets her drive in the town they live in.  Again, didn't hear that from my dad.  What's frustrating is I talk to them several times a week and after we've all been vaccinated for COVID see them once a month which is what they say they're comfortable with.  I think it has been in an attempt to shield us from my mom's progression.  I've also learned that now she is telling stories she believes to be true but clearly aren't. Which her dr confirmed is sign of dementia - does anyone else have insights?  

 Right now the main obstacle my brother and I face it trying to get my dad to get her the help that he can't provide. None of us can. But his mindset is so set on not burdening us with this and keeping her at home as long as she says she wants. But he's not in the physical condition to do this. Any suggestions on how we talk to him, support him, get him to realize we're all in this together and want to provide the care his wife and our mom needs?  

I really appreciate anyone's insights into this.  Our journey is just beginning, but I know many of you have lived with this for a long time.  My best thoughts to you all and all you and your families have been through.  So to share thoughts and insights with others just joining here looking for some guidance - I'm beyond grateful.

dayn2nite2

Do you think he’s covering or is it possible he’s having cognitive decline too?

loveskitties

Perhaps it might work to discuss "options" rather than a firm "must".

I am in the same boat.  My dad has dementia and my mother is his primary care giver.  Both are in their 90's!  Except for "bad days" my mother insists that they stay in their home and not move to a care facility.  She is concerned that a move would cause a more rapid decline for my dad.

We have put it to her that the wait lists are long for care facilities so she needs to determine if they will eventually move or if they will have in home care when needed.   There are no other options.

Even with this discussion we still can't get her to make a decision.  She is first on the DPOA so our hands are tied.  We (family) have discussed this at length and have determined we will just have to wait for the crisis to occur (which it will eventually) and then deal with the fall out as best we can.  

Wish there was a solution, but there doesn't seem to be other than preparing yourself for the day when options are no longer possible.

harshedbuzz

kate-

I had a similar experience with my own parents and may be reading things into this as a result, so YMMV.

Job One for you and your brother is to devise a "shovel-ready" Plan B that can be executed on the fly. At a minimum, you need a place where mom could be cared for if he becomes ill or is one of the 1/3 of caregivers who die first. If she would move in with one of you, you need a room ready and to have vetted an agency for HHAs. If she would be going into a MCF, you will want to have toured them and be familiar with entry requirements and waiting lists. It's also a good idea to know which 3 SNF would be your top choices in the event one of them needs rehab after a qualifying hospitalization. 

To answer you question about the stories that aren't true. These could be delusions (outright false beliefs) or, more likely, confabulations. These happen when a person's memory is unreliable and they can only recall snippets of information which they backfill with details that are untrue. Unless these could be harmful to her or your dad, it's best to let them slip. Dad's brand of dementia is noted for conflated memories; the ones where he was confused about what car he owned or that I neglected my kids (when it was my sister) I let pass without comment, the ones where he bragged about behavior that would land him in jail or my mother have multiple lovers I shot down. They say not to correct a PWD, but he was genuinely relieved that my mother only loved him. 

Reading between the lines, it seems like your parents might be a bit like mine were vis a vis dad's dementia. They might have phrased it as "not wanting to burden" but they were straight up secretive about dad's obvious decline. Early on, when dad still knew he was slipping, he pretty much tried to offend anyone who might take away his independence because of their concern. As a result, I was the only one with eyes on the situation. My mom wouldn't even agree to push for a screening until she almost died because he was too impaired to recognize she was acutely ill- I think dad's PCP knew he wasn't firing on all cylinders and called me as mom's emergency contact when she was admitted to the hospital.

Understanding dad's motives may help you unravel this. With my mom, there were several factors weighing into her initial refusal to have him diagnosed and later to admit how far he'd progressed and her need to bring in help. 

One strategy that was helpful was to sit down with her and encourage her to make a plan in case she died before him. They had no end of life documents aside from wills prepared. Talking about what she wanted got her thinking about the bigger picture.

It also might be worth asking him if his insurance policy would even cover your mom with a medical history that includes an Alzheimer's diagnosis. My agent said dad's would not. In an accident, they could lose everything. Two years ago my mother had a second accident in 2 months and was sued. She does not have dementia, but the process of being deposed and scheduled for court was very trying on both of us. The process took just over two years; given your mom's rate of progression, can you picture her defending herself in  court in a years time?

It helped me to also actively encourage her to look out for her own health in order to be there for dad and for her family. I knew I was destined to lose one parent to dementia- I wasn't prepared to lose both and I let her know that. 

Getting to the bottom of why dad is refusing help in the house is useful. It could be that they've made a promise to care for each other at home. It could be they're reluctant to have strangers in the house. I get it, one of the early HHAs we were assigned stole some of my mom's jewelry. It could be he doesn't want to pay the $30/hour a helper would cost. Are you able to provide him with a break?

HB

MN Chickadee

My parents were like this in the beginning too. It's common. Often spouses cover for each other and find this way of living where they just work around the dementia and pretend it isn't there. It works until it doesn't. It made me really uneasy, so I went ahead and toured and selected memory care facilities alone. I put mom on wait lists at 3 of them without my parents knowing. My dad didn't invite much input or help until it got so bad he couldn't go on. She was losing a lot of weight, taking the house apart and finding mischief everywhere. I asked him if it would be ok if I went to a doctor appointment with her. He agreed. This got my foot in the door. Having more communication with the doctor was the first step. I then told dad he had to have a break because I was worried about his health. I got her in an adult daycare so we would all have some respite and she could have something to do. I sold it more as benefits for her. That she would socialize more, it would help her cognition and keep her active. He agreed for these reasons, not because he would admit needed help. We were able to keep her home almost 2 more years with that arrangement. When she started not bathing at home we were able to have the aides at the daycare give her a shower which alleviated a lot of stress. 

Once she started to become incontinent he couldn't go on. I had to step in and totally take over everything. I think he would have died first if I hadn't. It was affecting his mental and physical health and this was when he finally admitted he needed help. I took the reins and laid out a plan and he went along with it. It took kind of a stern "let's be real" heart to heart where I was very direct, and also demonstrated that I had a firm grasp on what the disease was, where it was headed, and what resources were in our area. My goal was to give him no choice.  I took him to tour the MC places I had chosen. But all of it didn't need to be so hard if he would have just admitted she was sick, that it was terminal, and accepted some help early on. When she got lost driving he had her stop driving but let her walk around the neighborhood. Of course she still got lost. This stuff was so aggravating because it looked so preventable from where I was sitting, but sometimes our parents are stubborn. It's hard for someone to accept that their spouse of, in our case 50, years was slowly slipping away. 

Part of it was he didn't have time or the mental energy to think about this stuff. He was immersed in the day to day challenges, he didn't have time to read up on it or do research. You might find that doing all the legwork and research may help. Present him with vetted options. Find a neurologist or a good cleaning lady or a home health aide or whatever is needed and present it as "let's just try it temporarily." You may have to push some boundaries - roles reverse. The kids start to parent the parents and it's weird at first. If he doesn't have to do anything maybe he will try it. I was very grateful I had done the memory care legwork on my own. Having to do all that when we were in crisis mode would have been hard. 

yummiep

Hi all, I am new here but I also have similar situation. I actually am looking for adivce. My parents are in their 90s, and both have dementia. Mom has hernia and colon cancer. They too, pretend that everything is okay; and most of the time I found out through the helper whom my dad dislike. He claims she steals all the time. He won't let her in when my mom hasn't got up from bed and send her home when they want to eat. I feel so bad for the helper. I managed to get her into hospice care a month ago so I have a nurse that come once a week. He always said the doctors and nurses are useless. Anyway, my mom got scabie, I told my dad it's not an allergic reaction it's bites. He denied it and calimed that the bedroom is clean and there's no bites. I know they haven't clean the bedroom because they won't let the helper inside most of the time. And my mom hides thing so she didn't want the helper to know. Anyway, it's now all over her body and the nurse told me I need to put cream on her and at least completely clean the room if not the house. I can see my dad starting to kick and scream tomorrow when I go. I am dragging my brother to go with me because both of their beds needed to be clean. He usually yell at me for doing things he doesn't want, and he has a tendency to dismiss anything unless it's really broken - like the faucet, the pipes, the stairs. The basement was infested with bugs one time and he still denied it. He kicked the wall when my hubby and i told him that and he would say we don't know anything, he's been here on earth long before we were.

Can anyone give me suggestions? I can't take them out because both of them refuses to go out; I can't distract them because they will be keeping an eye on me no matter what we do. I can't explain to them because they won't get it.

Thank you!

M1

Hi yummiep and welcome. This is an old thread from three years ago, you will get more responses if you start a new discussion. So i took the liberty of copying your post to a new thread. It sounds like a very difficult situation.