Dad not seeing mom's dementia, I am exasperated

ChipsAndDip

I feel like I cannot do much besides watch a series of debacles unfold and help pick up the pieces afterward. The last six years mom's cognitive decline seems very clear, and a number of my parent's friends mention it to me. When I bring it up to my dad, he mostly refuses to discuss it and sometimes it escalates with him angrily swearing at me walking away or hanging up the phone. Mom and dad live independently in their home, both are mid-80's, and dad is the primary caregiver. 

Their PCP has gone through a questionnaire with mom and done some type of clock test, and she keeps responding correctly. Parents refuse to see a neurologist. Mom also has neuropathy, has limited mobility and uses a walker. Most days, they pass time sitting on the couch watching old movies. Mom used to do physical therapy, but lost ability to follow those instructions and is getting physically weaker. Dad seems exhausted. During my last visit, I walked around the house and noticed he no longer puts sheets on the bed, so they sleep on the bare mattress under a comforter. The house is cluttered with empty take-out food bags, discarded mail piling up in a corner, and the refrigerator has spilled food on shelves. Dad refuses to allow me to arrange for a cleaning service, nor will he schedule it himself. I called a local agency for a caregiver, but dad flatly refused. Dad also refuses to discuss assisted living options. Mom is agreeable, but dad refuses. I found their local senior center has activities and meals, but dad said because mom cannot easily move around, he is not going to pursue it. 

Against this backdrop, mom occasionally has episodes of extreme confusion. Dad thinks it is a UTI or medication side-effect. His routine is to take mom to the local emergency room where they admit her for a few days and release her finding nothing wrong. The last two hospital visits she was released into a rehab center for one month to regain strength. It seemed a bit counter-productive because she had extreme delirium there. She talked about people in the room who weren't there, thought she was in a train station waiting to be picked up, and said she had been busy canning peaches all day. Once released, she returned to a 'baseline', but it put a lot of stress on my mom. I question if dad's refusal to accept mom's condition is causing him to make bad decisions in mom's care. 

Can you tell me if you see other perspectives? Is this just age-related decline? If not, what is the best action for me to take?  

Thank you. 

Quilting brings calm

It is probably a combination of things:  denial, fear of the unknown, lack of education about dementia, inability to learn and retain knowledge about dementia, cognitive decline in your dad too, fear of finances, etc.  My step dad can barely read or write at 82.  It’s impossible to get him to understand Mom’s condition.   Unless you have full POA, there’s only a few things you can do: 

If your mom can seem competent for a while, you could print off a POA form at your state dept of aging, take her and a witness to a notary public and have her sign it in front of them,  That would allow you a little leverage over HER affairs. However you probably won’t get your dad to sign one and therefore you won’t have access to joint funds. 

You could apply for guardianship over one or both, but that’s a court process and a battle since your dad would certainly object for both of them. 

You may have to wait for a crisis - although her being sent to rehab was one and no one intervened and said she couldn’t  go home. Most likely because your dad said he would take  care of her - but also because people seem to just let families flounder. 

At the very least - write their doctor a letter.  Detail everything you just told us.  Deliver it by email, by snail mail, by hand or through a patient portal if you can access it on her behalf, and again on his behalf.  

Next time she is in the hospital - tell everyone that will listen that your dad cannot take care of her, that he isn’t taking care of her and that she can’t go home.  Tell them the conditions in the home,  Not sure it will help if he contradicts you.  

You are not alone.  Many of us cannot control our parents and are having the supposedly well one cause difficulties. 

ChipsAndDip

Thank you Quilting. 

It does help to know I am not the only one going through such dynamics, especially with parents and with the "good" parent who seems to be causing more problems than not. You state that next time she is in the hospital, to tell someone about the conditions in the home and that my dad is unable to properly care for her. I will keep that in mind, but I also know my dad will contradict it, and he is still able to clean it quickly if he knows someone is visiting. I assume such a maneuver will not end in any change and likely just cause conflict and perhaps an ultimate cut-off. My dad is already not happy with me about most things.    

I guess I also was looking for some confirmation that such dynamics are not just what most might consider "normal aging". I wanted to know if I am gauging this accurately. I do think my dad is not properly addressing her needs. He would be insulted if he knew I feel this way because he thinks he is doing great. I think he sort of likes feeling like her hero. In reality, I feel like he is just messing everything up. It sort of turns my stomach.

Lena2

I'm sorry to hear you are having such a hard time and I am also here looking for confirmation on what I can do if anything. Father in Law was the same with my MIL when she was dying of cancer. I think he was insulted and his pride hurt when I tried to get her help during the week. Its so frustrating to feel helpless when family members are in denial that there is anything wrong.

Jo C.

Hello Chips and a very warm welcome to you.  I am sorry for what is happening and can certainly understand your concerns and stress regarding this significant challenge.

You can always contact Adult Protective Services and they will make a visit.  While they will probably not take any action, your father will then know that APS has started a file on them; perhaps that will make a difference.   Just ask them to keep your name confidential as to who called them.

You may also want to call the Alzheimer Assn. 24 Hour Helpline at (800) 272-3900.  If you call, ask to be transferred to a Care Consultant.  There are no fees for this service.  Consultants are highly educated Social Workers who specialize in dementia and family dynamics. They are very supportive, have much information and can often assist us with our problem solving and planning.

My mother adamantly refused any help whatsoever for her and my step-dad when she developed FrontoTemporal Dementia; step-dad had Alzheimer's.   They refused to leave their home and were competent to make such a decision; they did not feel they needed any help, but they sure did.

What I ended up doing, was hiring someone myself, but had to be creative on how I presented this, "gift."   There were several adult siblings and spouses; I was able to call them together to go over to the house for a, "visit."  At this visit, we brought cake and made coffee.  In the midst of this, I presented an envelope with a ribbon on it . . . . we had this planned in advance . . . . we all made excited sounds of joy with big smiles . . . inside the envelope was a "gift certificate" I made on  the computer; it was for a "gift" of a "chore person" - it said in a letter with it, that they had worked so hard for so long and we wanted to take that burden off their shoulders and this was a gift and that I would be bringing the very nice lady to meet them when she starts the one day a week assistance.

Well . . . we were so busy smiling and clapping our hands and being absolutely delighted, that not much could have been said to throw it back into our faces.  (Puff, puff, pant, pant.)

I paid for the first couple or few weeks of the once a week person; I had chosen a person who was a good fit and discussed with her how to "woo" the folks as that woo-ing would enable me to hopefully have her kept on.

Well; I did have access to the parents bank accounts, so I was able to write checks for the helper after my gift ran out. In our case, if the person had woo'ed the parents enough to have them trust her and like her, and if she did a good job, they may then want to keep her if they see how nice their life and home is with her services.  It actually worked and they both loved her.

Anyway; that is just my experience.  If all is refused, then there is nothing you can do except wait for the next shoe to drop, and it eventually will. If you are in the house and decide to do a few things like putting sheets on the bed, or picking up or cleaning the refrigerator or bathrooms, that is at least something.

If things are this serious, I do wonder how reliable your father is with proper meals being made as well as being reliable on dispensing of medications with the right meds at the right time in the right dose. 

Sometimes, we are sadly caught up in a situation where we can do nothing except wait for that next shoe to drop, as said, and it is hard to stand by and let that happen.  Just keep letting all healthcare providers know of the situation, something may eventually come through that.  Also, do you think your father could possibly be having early cognitive changes?  Just a thought.

Let us know how you are and how things are going, we will be thinking of you,

J.

Love&Light

Welcome ChipsnDip (love the name)

Sorry you have to be here, but this is an amazing resource for folks in your situation. When my MIL stated showing signs of physical and mental decline, my husband and I just agonized over not being able to help her. We tried everything, including AL visits and deposits, references for in home care. None of it worked and we were sick about it. We resigned ourselves to waiting for the 'event' that would allow us to step in, and when it did, we were ready. We had the in home care agency picked out as well as an AL. The event was that she collapsed and went to the ER, after that she allowed us to 'help.'

Similarly with my father and his AD, his wife and he were in such profound denial and would not consider moving into AL when they were able. So I did the same thing, planned out all of the MC options near them, plus in home care agencies I had vetted. Then when the 'event' happened, I went into execution mode. For my Dad, this was at the very beginning of the pandemic and his wife went into the hospital with COPD. We didn't think she would make it and it was very obvious that he needed MC level support. 

I'm so sorry you're going through this. It's obvious how much you care and want to help. I think JoC's idea of a fabulous gift of help is quite nice. Who knows, it may work before an event happens or you have to get hard lined. Best to you!

Laurie67

 Hi, I am new here and just want to see if anyone may have any advice for me. My dad was just diagnosed with ALZ in February 2022 but has been showing many signs quite a bit before this. My mother has vascular dementia and has been in AL for a year. They have been married over 60 years. She''s doing incredibly well where she is. I know dad would benefit with this type of living or even in memory care? Love my dad but he is stubborn and won''t leave his house and will not let anyone come in to help care for him. Glad my mom is in AL because he wouldn''t let anyone come in his house to take care of her either. It''s hard enough to take him to the doctor. My dad has serious back issues and doesn''t get around very well. His house is 2 stories and has steps. I''m a nervous wreck afraid he will fall. I have a part time job and my 4 other sisters have full time jobs. He refuses to come to my home. But, to be honest, he needs care. He is very insistent and will NOT talk about leaving. He has 7 or 8 stray cats that he feeds that he is very attached to and 2 inside that pee and poop all over the basement, it stinks inside and stinks outside. It''s just a ridiculous situation. I''m overwhelmed by all of it. I would welcome advice if you''ve been in a similar situation. Thank you -

harshedbuzz

ChipsAndDip wrote:

I feel like I cannot do much besides watch a series of debacles unfold and help pick up the pieces afterward. The last six years mom's cognitive decline seems very clear, and a number of my parent's friends mention it to me. When I bring it up to my dad, he mostly refuses to discuss it and sometimes it escalates with him angrily swearing at me walking away or hanging up the phone. Mom and dad live independently in their home, both are mid-80's, and dad is the primary caregiver. 

Hi and welcome. A lot of what you have written feels very familiar to me. I had concerns about my dad's mood/cognition as early as 2005 and it took a crisis in which my mom nearly died, a psychotic episode and a dramatic 3 hour late night drive across 3 states to get dad diagnosed in late 2016. 

There are a lot of reasons a spouse might be "in denial". For my mom I feel like admitting dad had dementia felt somehow disloyal as his partner. Dad didn't have a lot of fans and had mostly burned through family and friend groups in 3 states because of his unfiltered behavior. I think, too, that she was terrified of losing the financial and independent life she had if people knew dad had dementia. And, frankly, I think she was the frog in the warm pot of water set to boil- she was too close to see clearly.

Their PCP has gone through a questionnaire with mom and done some type of clock test, and she keeps responding correctly.

These are screenings and there are some PWD who can pass them for a time. has a lot of cognitive reserve. (aka smarter than the average bear) This is especially true for certain kinds of dementia and/or if the person My dad tested fairly well for a man his age and education level not 9 months before his brain forgot how to swallow food and killed him. What's important here is that the PCP did blood work to rule out potentially treatable conditions that can mimic like vitamin or hormone deficiencies. 

Parents refuse to see a neurologist. Mom also has neuropathy, has limited mobility and uses a walker. Most days, they pass time sitting on the couch watching old movies. Mom used to do physical therapy, but lost ability to follow those instructions and is getting physically weaker. Dad seems exhausted. During my last visit, I walked around the house and noticed he no longer puts sheets on the bed, so they sleep on the bare mattress under a comforter. The house is cluttered with empty take-out food bags, discarded mail piling up in a corner, and the refrigerator has spilled food on shelves.

You know, if you wrote this about an 80-something- year old man living alone, most of us here would suggest taking him to the PCP for a screening for dementia/depression. So often people new to dementia think of it only in terms of memory loss, but there are also losses in executive function skills which are needed to stay on top of the IADLs. It's not uncommon to have 2 parents with dementia. FWIW, some studies out of Europe suggest 20-35% of people 85 years old have dementia.

Dad refuses to allow me to arrange for a cleaning service, nor will he schedule it himself. I called a local agency for a caregiver, but dad flatly refused. Dad also refuses to discuss assisted living options. Mom is agreeable, but dad refuses. I found their local senior center has activities and meals, but dad said because mom cannot easily move around, he is not going to pursue it. 

My mother was loath to spend any money on this sort of thing. Perhaps he feels he can't afford the luxury of a cleaner or HHA. Or maybe he doesn't want anyone in the house. Or maybe he feels he's on top of things just fine. It still might make sense to attempt a "Come to Jesus" discussion. This strategy worked for me a couple of times when I needed mom to make a sensible decision when her preference was ignoring the elephant in the room. I used it to get mom to name me as her POA after she nearly died with dad as her medical advocate. I also bullied her into placing dad as she wasn't up to his day-to-day care saying it was her one opportunity to select the facility herself as I would take first available. 

Against this backdrop, mom occasionally has episodes of extreme confusion. Dad thinks it is a UTI or medication side-effect. His routine is to take mom to the local emergency room where they admit her for a few days and release her finding nothing wrong. The last two hospital visits she was released into a rehab center for one month to regain strength. It seemed a bit counter-productive because she had extreme delirium there. She talked about people in the room who weren't there, thought she was in a train station waiting to be picked up, and said she had been busy canning peaches all day. Once released, she returned to a 'baseline', but it put a lot of stress on my mom. I question if dad's refusal to accept mom's condition is causing him to make bad decisions in mom's care. 

He's getting her care which is good. This might be a roundabout way of getting himself some respite without admitting he needs it and having most of it covered by insurance. And the people at the ER haven't reported her as "at risk" so that's a positive. Is there anyway you could force a neuro consult next time she is hospitalized? 

Can you tell me if you see other perspectives?

There are as many reasons for this kind of reaction to dementia as there are PWD. But a man in his 80s whose home is a disaster raises the question of his own cognition. 

Is this just age-related decline?

Ugh. Early on when I mentioned concerns about my dad to both my parents- damned rookie- dad told me "it's a normal part of the aging process". This line stuck and I heard it often. Doctors tell me there is no such thing as it applies to cognition. 

If not, what is the best action for me to take?  

I see 3 options aside from attempting the CTJ. 

1. See a certified elder law attorney to explore whether you have any shot at guardianship of one or both. Nothing you write suggests it's at that point, but s/he might be able to give you ideas about what behaviors would tip the scales in your favor. But if there is spoiled food and unpaid bills you would have more leverage.

2. Involve APS. It doesn't sound like you are there yet either. But starting a file makes sense.

3. Draft a Plan B. You need to come up with a scenario to make this happen should your dad die or become incapacitated first. This is what I did when my mom was stonewalling me. When she was dithering over getting him to a specialist, I researched best available doctors near me as medical care quality and availability is abysmal to iffy where they lived. When dad became psychotic- I had a plan. I also toured a dozen MCFs so I would know which one would be best for dad and what I'd need to do to place him. I also had picked out a SNF which would take dad self-pay on-the-fly should I have a wait to get him into my preferred MCF. 

Thank you. 

ChipsAndDip

Lena, Jo, Love and Light, HarshedBuzz - Wow. Thank you for the insight and advice. 

Making a backup plan, researching ALF and MC options is good. Then I will be prepared. Visiting with an elder attorney is also a good step and something I never thought of. 

So many angles to this, it seems overwhelming. Focusing on the practical steps I can take for my parents, as well as keeping my sanity in the process, is really helpful. The extra bonus is also that I feel acknowledged that my view on this is warranted.  

Thank you, everyone.    

MN Chickadee

Some people do have to wait for that crisis. There's no reason you can't be on the wait lists at some facilities to be ready, just don't tell your parents. I would tour and get on the lists of AL and MC so you are ready if one or both of them suddenly needs to move. An elder law attorney is a great place to start, they can lay out any options reagarding APS and guardianship. Is there any way to use therapeutic fibs into getting a POA done? Maybe you and your spouse are doing it and the attorney said dad can come and get his done for free? 

Also, if the privacy forms have not been filled out her PCP can't tell you anything but you can tell them stuff. You could consider calling or sending a letter ahead of the next appointment stating how things are at home, what you are seeing, and ask them to dig a little deeper. This could backfire, as some doctors may tell your parents and some may not. Could be a scorched earth tactic but depends on how at risk they are.  You might get farther just stopping mentioning it to dad, try to be his BFF and outwardly support whatever he wants to be in his good graces, and working behind the scenes where you can. 

Dad's handling of every day life does not sound normal. Is there a chance he is having some cognitive decline too and it's just masked by the enormity of his wife's? 

Are you able to show up during these episodes of her being in the hospital? If so maybe you could get the ear of the attending doctor in the hall to plant the seeds of needing further investigation this time. Explain they have done this dance before and this time they need to get some real answers as to mom's cognition and explain what you are seeing at home. They likely are not hearing the whole story from dad. In my experience, doctors in those situations don't usually ask about HIPAA, they assume if you are there at the hospital and you are immediate family then you're in the clear. 

And if worst comes to worst, be ready for the crisis. It will probably come eventually hard as it is to accept.