Dad caring for Mom with Alzheimer’s won’t let us help

Janene

I just found out yesterday that my mom received a Alzheimer’s diagnosis several years ago. Her memory has been getting steadily worse, but . . . she’s 91, so it didn’t seem so odd. It’s a lot to absorb, but the problem I’m struggling with isn’t my mom. It’s my dad, her caregiver. He is 88 and likely dealing with mental illness of his own. He refuses to discuss the details of my mom’s situation with me or my sister and refuses to let us help with her care. He’s been caring for her single-handedly for several years, but she’s getting bad enough now that he is starting to crack. Dad is paranoid that my sister and I are trying to steal his (non-existent) money. Mom is on hospice care and he allows the nurse and other caregivers to come in, but he refuses to let my sister or I help. He refuses to hire extra help. He leaves her alone for 3-4 hours a day, something the hospice nurse says is a bad idea, but he won’t let us stay with her. He often makes her cry, forcing her to leave home to go to a restaurant for lunch where she’s likely to have a toilet accident. She’s mortified and no longer wants to leave home. She cries. I tell him to knock it off. He’s angry with me and believes I have amped mom up and caused her to “act out” and says that what she needs is a “firm hand.” He doesn’t want me to spend too much time with her, becoming angry when mom and I have a conversation that goes round and round—her asking the same questions and me answering them over and over. I figure, why not? He figures we should both shut up. I read the thread about family members who refuse to help, but I have the opposite problem. My sister and I are competent, loving, and desperate to help our mother whom we love. Dad won’t stand for it.

Thank you for your help. I’m completely confused and heartbroken.

[Deleted User]

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harshedbuzz

Janene wrote:

Hi Janene and welcome. I am sorry for the reasons you find yourself here, but so glad you did. There is so much to unpack around this tragic situation.

I just found out yesterday that my mom received a Alzheimer’s diagnosis several years ago. Her memory has been getting steadily worse, but . . . she’s 91, so it didn’t seem so odd.

The kind of forgetfulness associated with Alzheimer's is not normal. And it includes other critical changes around mood, executive function, empathy, apathy and social filter.

It’s a lot to absorb, but the problem I’m struggling with isn’t my mom. It’s my dad, her caregiver. He is 88 and likely dealing with mental illness of his own.

It is very unusual for a person in their later years to develop a major mental illness? Has he always had a tendency to mental illness? Depression? Bipolar? Psychopathy?

He refuses to discuss the details of my mom’s situation with me or my sister and refuses to let us help with her care. He’s been caring for her single-handedly for several years, but she’s getting bad enough now that he is starting to crack. Dad is paranoid that my sister and I are trying to steal his (non-existent) money.

TBH, this sounds more like dementia than mental illness, though I know from person experience with my own dad than the two can not only coexist the latter can really flavor the presentation of the former. The controlling and paranoia are straight out of the Dementia Playbook. 

 Mom is on hospice care and he allows the nurse and other caregivers to come in, but he refuses to let my sister or I help. He refuses to hire extra help.

It's great that he's got hospice involved. He may not be hiring extra help because of the cost; an agency aide is $30/hr where I live with a 10 hour weekly minimum. If his money is truly non-existant, this isn't an option for him.

He leaves her alone for 3-4 hours a day, something the hospice nurse says is a bad idea, but he won’t let us stay with her.

This shows a stunning lack of judgment. TBH, I am kind of surprised none of the hospice people have not reported this to APS. It's appalling. Assuming your mom qualifies for hospice because of her dementia alone, she is in no way capable of handling a home emergency. 

Back when dad was stage 6- well before he would have qualified for hospice- my mom arranged for a new HVAC system to be installed. She would still leave dad for an hour here and there to pick up prescriptions or groceries around the corner. On this day, she had a medical appointment and asked me to come in case the techs had any questions. She didn't want dad mixing it up with them- his spatial reasoning was shot and he was constantly trying to fit things into weird places. As I chatted with dad in the living room, a smoke detector went off because they were soldering- the teach called down to tell us. The alarm sounded for almost a full minute. For the first 60 seconds, dad just sat there. Then he looked at me and asked "what's that infernal racket?" I explained about the soldering and the techs. He sat for a couple seconds, stood up and toddled off to look for my mother. Dad forgot the steps to take in an emergency and he forgot my mother wasn't home. After I told mom what had happened, she never again when further than the front yard without a caregiver on hand. 

He often makes her cry, forcing her to leave home to go to a restaurant for lunch where she’s likely to have a toilet accident. She’s mortified and no longer wants to leave home. She cries. I tell him to knock it off. He’s angry with me and believes I have amped mom up and caused her to “act out” and says that what she needs is a “firm hand.” He doesn’t want me to spend too much time with her, becoming angry when mom and I have a conversation that goes round and round—her asking the same questions and me answering them over and over. I figure, why not? He figures we should both shut up.

As badly as your dad is behaving, I think he is worthy of some empathy as well. Was your relationship with dad fraught all these years or is this new? You seem to be hyperfocused on how this disease is impacting mom with little compassion for dad who is a happy marriage would be losing his beloved partner. My own mother struggled mightily with dad's cognitive and emotional changes and the limitations they put on her own so called golden years. Sometimes, she was in denial because she was so close to the situation. Other times she was resentful when tone deaf friends and family blathered about their latest trip to Europe, winter in Florida or the great new restaurant that just opened. 

My mom, especially, struggled with incontinence as it stole what little dignity he had remaining in her mind. She and I actually had something of a dustup when I found her scrubbing an entire hall of feces all the while forbidding me to call it the result of incontinence. She insisted he'd just had a "little accident".
I read the thread about family members who refuse to help, but I have the opposite problem. My sister and I are competent, loving, and desperate to help our mother whom we love. Dad won’t stand for it.

Are you willing to take over? In your shoes I might make one last pass at getting cooperation from dad if only so I could say I tried. I might pose the request to be looped in so that I could take over seamlessly should he be unable to care for her because of illness or death. His reaction to that should give you a good sense of where he is cognitively. 

Victoria's suggestion of contacting the family doctor with a bulleted list of your concerns about dad's cognition and care of your mom is an excellent first step. Yours would not be the first family in which both parents had dementia, but one parent wasn't identified because their presentation was more subtle or they were not as advanced in the disease. 

If that fails, this may be one of those rare instances where it would be appropriate to employ the nuclear option. You and or your sister could apply for emergency guardianship/guardianship of your mother based on neglect in her home. In your shoes, I would make an appointment with a CELA to discuss a plan to get guardianship of mom and potentially dad as well if he is deemed incompetent. 

HB
Thank you for your help. I’m completely confused and heartbroken.

Cynbar

You say your mother is on hospice. There should be a social worker available to you who could help assess the situation and work with all of you in coming up with a plan. If you haven't had contact with the social worker, ask your nurse case manager who it is, or call the hospice office directly. He/she is usually a master's level, licensed clinician who will have a lot of skills to deal with complicated family dynamics (which are usually exacerbated at end of life.)  Please call --- I think the social worker can be very helpful to all of you.

Janene

Hello,

Thanks so much for your help! Answers to your questions:

* I'm pretty sure my dad has POA for my mom, but he would never consent to giving anyone POA for himself. I don't know anything about health care proxies for either of them. Just asking these kinds of questions makes him angry and suspicious, so we quit asking years ago.

* I don't know who my dad's doctor is . . . and it's not something he'd tell me even if I asked.

* Good idea about checking property tax records. I'll do that. I'd be surprised to find he's behind on financial things, but he is become quite confused in other areas so who knows. For example, he thought the hospice nurse told him that mom would be ready for morphine in a couple weeks and he took that to mean that they'd be "putting her to sleep." I asked the hospice nurse if she had any idea how he got that idea and she said maybe they'd told dad mom would be ready for another drug (that sounds a bit like "morphine" if your hearing is bad like his is).

I'm making a list of information to gather (or attempt to gather). Thanks for pointing me in the right direction! This would be overwhelming without help.

Janene

I am in touch with the hospice social worker. She said she'd visit mom next week and try to convince dad to get more help and not leave mom alone. I doubt she'll be very far, but she is a good resource for us, absolutely!

Here is another example of my dad's confusion. He told me the hospice chaplain and his assistant rotate weekly visits. The assistant sings for them, which my dad loves. Turns out the singing "chaplain's assistant" is actually the social worker who was amazed when I told her dad misunderstood her professional role.

Janene

Thanks again to everyone for the help! More answers to your questions:

* My dad has always struggled with mental illness but I don't know the details. I believe he's had a bipolar diagnosis (?) and I am certain has had frequent and severe bouts of depression.

* Dad could afford to pay for help but is very tight with money. He leaves the house twice a day to exercise. He walks several miles in the morning and rides an electric bike (he's 88!!) for several hours in the afternoon. He says it's the way he fends of depression. The problem is leaving mom alone while he's gone. She is in no way equipped to handle an emergency. The hospice nurse considers her a fall risk and worries that she might leave the house looking for dad if she woke up and he wasn't there (although she has not done this yet). Dad's solution is to keep her asleep with lots of CBD. The nurses know he's giving her this but I'm not sure they fully know how much (neither am I, but I do see him giving her a CBD cough drop every time she "acts up" or when he needs to leave to exercise. He thinks she'll stay asleep but one day surely she won't. 

* I first met the hospice staff a few days ago; they were happy to see me for sure and appreciative of the insider information. They have been concerned about mom's safety but as far as I know have not reported to APS. On the other hand, maybe they have. The social worker said she couldn't give me information because of HIPPA. 

* I completely agree about my lack of empathy for my dad. We have never had a close relationship. His current behaviors are not new. I have contacted a therapist for myself to help me figure out how to deal with all this, and I am sure dad would react to me better if I could be more understanding. It's just so hard!

* You ask if I'm willing to take over? I'm not sure. It would require a lawyer (Dad would never consent) and feels like a lot of added trama to an already fraught situation. I also think Mom is better living in her own home for as long as she can. At some point, I might have to take over, but I don't think we're there yet. But I should contact an attorney anyway just to gather information and get started on that should the need arise. 

* I have told Dad I'm happy to help by staying with mom while he's out. I've also offered to help him consider long-term options for her care (and his) . . . but just bringing these subjects up makes him mad.

Thanks for your insight!

harshedbuzz

Janene wrote:

Thanks again to everyone for the help! More answers to your questions:

* My dad has always struggled with mental illness but I don't know the details. I believe he's had a bipolar diagnosis (?) and I am certain has had frequent and severe bouts of depression.

I can relate to this. My dad, who was my PWD, also had mental illness likely bipolar given family history but in describing him to psychology professionals I've worked with they lean towards borderline and even mild psychopathy. 

Because so much of what dad said and did in the earlier stages was not all that different from scripts I'd heard growing up, it was really hard to draw a line in the sand between dad being dad and dad having dementia. "Personality" can persist well into later stages, so it is possible he has mental health issues and a cognitive shift. It's worth exploring as 2 people with dementia can kind of prop and cover for one another until a crisis. 

* Dad could afford to pay for help but is very tight with money.

I can relate to this too. My dad was always cheap; more so as dementia took over and he found himself living in 1977 with 1977 prices. My mom was loath to pay for outside help, too. Dad had daytraded away about $350K in the early stages and she wanted to preserve assets for Stage 8 and her own eventual care.

He leaves the house twice a day to exercise. He walks several miles in the morning and rides an electric bike (he's 88!!) for several hours in the afternoon. He says it's the way he fends of depression.

It probably does help him with mood. I hate to criticize someone for "taking time to put on their own oxygen mask" but he's gambling with your mom's safety.

The problem is leaving mom alone while he's gone. She is in no way equipped to handle an emergency. The hospice nurse considers her a fall risk and worries that she might leave the house looking for dad if she woke up and he wasn't there (although she has not done this yet).

This must be so hard for you. Not only is a PWD at risk in an emergency, many of them gravitate to creating dangerous situations left to their own devices. When I flew to Florida when mom was hospitalized with liver failure, I watched dad cross polarity jumping a car so I wouldn't take his. Knocked me clear across the garage. Ten minutes later he put a sterling fork in the toaster knocking him across the kitchen. A number of families have had moms start kitchen fires cooking stove top on towels or cardboard or putting unsafe containers in the microwave. 

Dad's solution is to keep her asleep with lots of CBD. The nurses know he's giving her this but I'm not sure they fully know how much (neither am I, but I do see him giving her a CBD cough drop every time she "acts up" or when he needs to leave to exercise. He thinks she'll stay asleep but one day surely she won't. 

CBD would likely increase her risk of a fall. 

* I first met the hospice staff a few days ago; they were happy to see me for sure and appreciative of the insider information. They have been concerned about mom's safety but as far as I know have not reported to APS. On the other hand, maybe they have. The social worker said she couldn't give me information because of HIPPA. 

Ugh. I hope she can put the information to good use. 

* I completely agree about my lack of empathy for my dad. We have never had a close relationship. His current behaviors are not new. I have contacted a therapist for myself to help me figure out how to deal with all this, and I am sure dad would react to me better if I could be more understanding. It's just so hard!

Oh boy do I understand this. My dad and I never got along. My late sister was his favorite and I endured years of lesser treatment. Plus, one of his dementias was an alcohol related one which puts this whole situation into the context of a self-inflicted wound. Ironically, when his dementia started, he accused me of all of the poor decisions she ever made. 

But I had done work around this earlier in therapy and came to a place where I could accept- most days- that when I said "it's the disease talking" sometimes it was the mental illness and not the dementia. Seeing it that way helped me stay emotionally OK and be an effective advocate and caregiver. Towards the last weeks of his life, the really ugly stuff seemed to fade and I got a glimpse of the sweet little boys his ancient aunties adored. 

* You ask if I'm willing to take over? I'm not sure. It would require a lawyer (Dad would never consent) and feels like a lot of added trama to an already fraught situation.

That's why it's the nuclear option. There's no going back.

I also think Mom is better living in her own home for as long as she can. At some point, I might have to take over, but I don't think we're there yet.

Maybe. Maybe not. If she's being treated unkindly. Left alone so he can do his thing. And taken out so she can be humiliated by incontinence. She may do better in a place with professionally trained dementia-informed caregivers and activities designed to engage and entertain her. My mother adored my dad, but I have to say he got better care from professionals because he cooperated with them. 

I moved my parents nearer me from FL and MD so I could keep them safe and help out. I don't think the move had any deleterious effects on him. My mom missed her warm winters and beach but dad was confused enough he thought he was in FL with weeks of the move.

But I should contact an attorney anyway just to gather information and get started on that should the need arise.

This is a great idea. Make it a CELA. You can find one at nelf.org.

Getting guardianship from a spouse is not easy, but with both sibs on the same page and dad's utter disregard for mom's safety you might prevail. The judge might even order neuropsychological testing for your dad which would determine if he's drifting into cognitive impairment or dementia.

* I have told Dad I'm happy to help by staying with mom while he's out. I've also offered to help him consider long-term options for her care (and his) . . . but just bringing these subjects up makes him mad.

It sounds like dad sort of has a routine- leaving in the morning and afternoon. What if you and your sister took a shift each day arriving just after he'd left. That would allow you to be the safety net and him to get his much needed me-time. Sometimes with the elderly, especially PWD, it's easier just to act rather than ask permission. 

While you're there, look for prescription bottles that may the have the names of any doctors he sees. 

That said, taking on caregiving is a tremendous responsibility. When I moved my parents here 5 years ago, I thought in terms of this being a relatively short term project. They took over my life with me supporting mom. And then dad died and she had a couple of medical events. She's delightful and independent in her ADLs and IADLs, but I am it for social interaction in COVID-times and she no longer drives, so I am the one ferrying her around 100% of the time now because of the virus. 

Thanks for your insight!

Hugs from one daughter to another.

HB

Janene

Thanks for your support! I like your idea of remembering that it’s the disease talking, in this case my dad’s likely mental illness. I think that will help me be more patient. And I agree that his leaving the house a couple times a day to exercise is vital to his well-being. It would be great if my sister or I could sit with mom during these times and if we could get in after he left we might. But I’m sure he locks the house when he leaves and neither of us has a key. We’d have to break in and then face his wrath when he returned, both about breaking in but also about being alone in the house at all—he thinks we’re trying to steal his financial documents. He’d be certain we’d gone through his files and/or stolen stuff. He also won’t leave either of us alone with mom. In fact, I was trying to remember today when I was last alone with her. I think it was in high school before I got a drivers license. She would drive me to school or whatever. I don’t think I’ve been truly alone with her since. He won’t allow it.

It’s a crazy situation but I’m feeling less hopeful than yesterday (after I’d just discovered this whole mess). I don’t think there’s a good or easy solution but surely there’s a way to get through it intact.

Thanks again. It’s super helpful to have a listening ear and advice.