New here ... lots of questions and concerns

Leslie R.

Hi everyone ... I'm new to this site, which I found while looking for a support group for family members/care givers for Alzheimer's patients. My mom (78 years old) was officially diagnosed about 2 years ago and as the disease progresses and her symptoms worsen, I have more and more questions and concerns.

I'm an only child and live about 30 minutes from her home. I'm recently retired so I try to make myself available for visits as often as possible. Her primary caregiver is her husband (80), who is physically and mentally healthy, but I'm starting to worry about the level of care he's providing. I can tell that his patience is starting to wear thin at times.

Her diagnosis couldn't have come at a worse time during the COVID pandemic which forced her to isolate at home and has been unable to see friends and family members. As a result, she has become nearly 100% dependent on her husband for EVERYTHING. When I mention this to her neurologist, she recommended that we ask her husband to "step back" from doing everything for her, but at this point I'm not sure what she's even capable of doing for herself. She no longer drives, cooks, or cleans the house. She struggles with using her cell phone and computer/e:mail. She asks her huband's permission to do anything or go anywhere. It seems like she relies on him to make every decision - what to wear, what to eat, etc. One of my biggest concerns is that he often gets upset with her when she expresses worry or confusion (esp. her confusion about upcoming appointments) and yells at her, which only upsets her even more and makes her cry.

I try to visit her at least once a week and bring home-cooked meals since I don't think she's eating healthy anymore. I also try to get her out of the house those days to give them a break from each other. During the height of the pandemic, she was very reluctant to go anywhere, but she's starting to relax a bit and lets me take her to restaurants, shopping, movies. But these are short outings and she's anxious to get back home.

My biggest worry is what will happen if anything happens to her husband and he can no longer care for her. I know this is something we need to discuss as a family, but I'm not sure how to approach the subject and whether she should be involved in the conversation or if this will just upset her even more.

Does anyone have experiences that sound like these ... or any suggestions on this topics?

Any feedback would be much appreciated!

terei

Read many many of the posts on this site + familiarize yourself with what is in store for your mother + your family.

Firstly, I will say, NO, she should not be included in any family discussions that have to do with her current or future care.   She will not be able to retain the information anyway + it will only serve to at the minimum, upset her + at the maximum, cause a meltdown. If she cannot use a cell phone, she is unable to make important life decisions.

If you can encourage your dad in reading the same info.  Him caretaking is a huge stressor on him + it will get more and more challenging for him(as it is with everyone).  When the doctor said to ‘step back’ she meant to get help in to support your father, not that she should be expected to do these things herself.  Once your mother has lost her ability to do these daily things,  she will not be able to accomplish them. period.

This is a progressive disease.  If your father is having trouble now, it is going to get worse as time passes + your mother becomes more + more dependent + increasingly unable to function.  It sounds as if your mom is being compliant + you are not seeing any over the top behaviors.  That is good.   It makes things easier for everyone.

If it was my family, I would be talking about having caregivers come in + start looking at possible MC facilities for future placement.  There are lists you can get on if you want to.  

You are right to be concerned about what will happen if your father becomes unwilling or  unable to care for her.   Then you will be in a crisis situation with no plan B in place which may force you to make decisions under pressure.  Good luck.    PS I assume all legal paperwork has been done within the family for both your mother + father’s financial + medical DPOAs, wills, etc etc etc.  If not, a certified elder law attorney should be consulted ASAP

SusanB-dil

Hi Leslie - welcome to 'here'...  Yes, it is hard to see a LO in such a state. 

I agree with terei with what's been said.

just want to second the concern with DPOA paperwork and HIPAA access.

My other concern is with her husband - and it seems he is either starting to feel overwhelmed, or perhaps doesn't want to face the whole situation, and you have noticed how this is affecting her.  Do check out the 'solutions' tab up above.  I know others will weigh in with more info.

Lindsay22

Hi Leslie, 

Welcome to our corner of the world that no one comes to voluntarily. At this point it seems you are going to need to have a conversation with her husband (I'm assuming he isn't your father) about planning for the future.  Right now he is the one with default authority to make decisions on her behalf but this can be changed with a DPOA which I would suggest.  You don't say much about your relationship with him but I would suggest you couch it as "we need to think about the long term for mom" and what might happen if he isn't able to provide in home care anymore.  You also need to get an idea of their financial situation.  As an only child with a step-parent I know how tricky this can be but after everything I've gone through I insisted that my dad and step mom make me at least aware of long term financial situation and what I would need to know in the case of their failing health. 

It's possible that if they are able to afford it he wouldn't be opposed to getting her into AL. Our perhaps a day program.  You don't know until you talk to him.  You could also start by suggesting some in-home help and pose it as help for him on the things mom used to do (cleaning, driving to appointments, cooking etc.) Again, if they are able to pay for a "housekeeper" in the early stages this can give both of them some relief and lower the tensions surrounding everything being on him. This individual can also act as eyes and ears for you on how things are really going in the home. 

As the others mention you will find TONS of info on this site based on our collective experiences.  It is very very hard and often a long and uncertain journey but this community is here for you. 

harshedbuzz

Leslie R. wrote:

Hi everyone ... I'm new to this site, which I found while looking for a support group for family members/care givers for Alzheimer's patients.

Hi and welcome to the best online group you never wanted to join. I am glad you found us, but sorry for your need to be here.

My mom (78 years old) was officially diagnosed about 2 years ago and as the disease progresses and her symptoms worsen, I have more and more questions and concerns. 

I can appreciate that. I am going to be a bit blunt, but please understand that this doesn't come from a place of unkindness or judgment. 

I'm an only child and live about 30 minutes from her home. I'm recently retired so I try to make myself available for visits as often as possible. Her primary caregiver is her husband (80), who is physically and mentally healthy, but I'm starting to worry about the level of care he's providing. I can tell that his patience is starting to wear thin at times.

This sounds familiar to me. I am an only and ended up moving my parents closer to me so that I could provide more hands-on support to my mom (80) who was caregiver to my dad with mixed dementia (84). I get a sense from your word choice that her husband is not your dad, no? Do you generally enjoy a good relationship? Dementia can really tear apart even the closest and most functional of families as it's common for some people to not be on the same page in terms of the best approach or even have the same sense of how impaired their LO is. 

One thing I noted with my mom was her serious denial about dad's cognitive shift; she was losing a partner she'd intended to spend the rest of her life with while I was losing a parent which, while sad, is to be expected. I found at times that I had to extend her grace even when her choices made me crazy or created drama. 

Another piece is that caregivers who are elderly, lack the stamina and resilience they had when younger. The caregiving piece takes more out of them. And faced with mom's terminal diagnosis, he's living with the notion that his last years on this mortal core are not going to be as he'd imagined. He may be worried about care costs, being devastated financially and even about her care should he die first. 

The best thing you can do for your mom, assuming she isn't being abused, it to support her caregiver in any way you can. Visits are nice and all, but it sounds as if this man needs some serious respite. Perhaps you could schedule a couple of afternoons each week where you take mom shopping, to lunch to a hair appointment so that he can have some time to himself that he can reliably look forward. Perhaps he has family he'd like to travel and see; you could stay with mom for a week giving him time off and yourself a better idea of your mom's current baseline and what's 24/7 care is like. 

Her diagnosis couldn't have come at a worse time during the COVID pandemic which forced her to isolate at home and has been unable to see friends and family members. As a result, she has become nearly 100% dependent on her husband for EVERYTHING.

While it's tempting to blame COVID-times, it's really hard to say that her decline would not have happened anyway. My own dad went from diagnosed to dead in less than 2 years. Every PWD progresses at their own pace.

When I mention this to her neurologist, she recommended that we ask her husband to "step back" from doing everything for her, but at this point I'm not sure what she's even capable of doing for herself. She no longer drives, cooks, or cleans the house. She struggles with using her cell phone and computer/e:mail.

He's probably doing as much as he does because she no longer can. It might even be a point where she's can attempt some things but gets upset when she's not successful so he's sparing her that. It could also be true that he hasn't the energy or patience to clean up after she's made a mess of something.

She asks her huband's permission to do anything or go anywhere. It seems like she relies on him to make every decision - what to wear, what to eat, etc.

This is common. Many PWD have a "person" who is kind of like their security object and sherpa. In some instances, the PWD "shadows" their caregiver and will follow them everywhere through the day. This seems like no biggie until you have lived it. Many women, specifically, seem to regress to an almost childlike state in their personalities. 

One of my biggest concerns is that he often gets upset with her when she expresses worry or confusion (esp. her confusion about upcoming appointments) and yells at her, which only upsets her even more and makes her cry.

This isn't good. My mom had a short fuse with my dad early on. It pained her to see the love of her life become less than he'd been before and she could get quite short with him. Respite helped and so did this quick read-

12 pt Understanding the Dementia Experience (dementiacarestrategies.com)

I try to visit her at least once a week and bring home-cooked meals since I don't think she's eating healthy anymore.

IME, nearly all PWD have their palates change and getting a healthy det into them can be a challenge. This isn't necessarily a failing on her husband's part but the nature of the disease process. Most PWD develop a sweet tooth and would happily graze on junk. I'm sure he appreciates the meals. 

I also try to get her out of the house those days to give them a break from each other. During the height of the pandemic, she was very reluctant to go anywhere, but she's starting to relax a bit and lets me take her to restaurants, shopping, movies. But these are short outings and she's anxious to get back home.

Maybe it would make sense to stay home with mom and chase her husband elsewhere. He might enjoy cards with friends, a quiet lunch somewhere or even catching up on errands and his own self-care. That said, if anxiety is an issue for your mom, it would be prudent to look into getting her in with a geriatric psychiatrist for medication to try to relieve that and improve her quality of life. 

My biggest worry is what will happen if anything happens to her husband and he can no longer care for her.

At least 1/3 of caregivers died before their PWD. It would make sense to have a conversation with her husband to confirm that the documents are in place to take over her care immediately. Does he have children or other relatives he may be leaving his estate to? You need to know about what is in place for mom's care- assets, insurance, etc. 

This is not a conversation I would include mom in. She has already lost the ability for reasoned thinking and this will likely just upset her. In your shoes, whatever the answers to the above questions, I would craft a shovel-ready Plan B. Decide if you would move mom in with you and become a 24/7 caregiver and make the changes to your home now- walk-in shower, first floor bedroom, etc. If you prefer she joins a memory care community, you should start touring them now and get a sense of what's offered, how long the waiting-lists are and how you plan to pay for it. If she won't have the assets to cover care for the rest of her life, you'll need to make your choice based on a transition to a Medicaid bed when the time comes.



 I know this is something we need to discuss as a family, but I'm not sure how to approach the subject and whether she should be involved in the conversation or if this will just upset her even more.

You and her husband need to have this conversation away from your mom. If your mom's neurologist is with a memory care clinic, they may have a MSW who could walk you through the discussion. 

Does anyone have experiences that sound like these ... or any suggestions on this topics?

My mom didn't want to talk about it. I worked behind her back to craft my plan B knowing she would inherit their assets so I had a ballpark figure with which to work. 

Any feedback would be much appreciated!

You are so wise to be thinking about these hard questions. 

HB

May flowers

You are a caring daughter, and your mom is lucky to have you in her life.

A lot of good advice in the responses. Would her husband be willing to bring in a caregiver, even a few hours a week? Maybe a housekeeper too? There are also daycare facilities that might be good for her, giving her activities and socializing and her husband a break.

When my FIL lived alone, I would cook a weeks’ worth of dinners and put them in the fridge or freezer for him. It worked well for a while, when he was still able to make himself breakfast and lunch. My DH took care of his lawn, I did the laundry once a week and cleaned up some.

I think this conversation should be between you and him, it is really hard to discuss care with someone who has dementia. They just don’t get it, and often they get defensive. But you can maybe find out what is most supportive for the husband. Like, for me, the greatest help right now is time - maybe he is in the same boat. Or maybe he needs supportive help if he is not used to cooking and cleaning.

Just thoughts.

Leslie R.

Thank you, Lindsay.  You're right - her husband is not my father, but we've always had a close relationship.  They've been married for 35 years. 

What is a DPOA?   They have mentioned their will to me already and I assume they've already made their final arrangements, although I have not heard what those are exactly.  They are well off financially, so they can afford to get some help in the home.  In fact, my mom's sister has already recommended a housekeeper who can come in and do some cleaning, but he was reluctant to do that.  Not sure why ... so I guess I need to talk to him about that.  

I've also suggested that he get on the ALZ website and read up on the disease and what to expect, but he's not tech savvy, so I'm not sure if he's done that yet.  I may have to help him get started.

I will begin to explore this site and get as much information as I can.  Thanks for getting me started!

Leslie

Leslie R.

HB - 

Thanks so much ... this is all very helpful information and a lot for me to think about and figure out.  

I agree that her husband needs a respite, but he's pretty much a homebody and doesn't socialize much.  His family lives in Florida, so he's on the phone with them a lot.  It's helpful for him to get my mom out of the house, but it's not always easy to do.  There are many times when I or her sisters try to get her out that she says she "doesn't feel well" ... which is her code for "not a good day", and she refuses to go out or see anyone.

Not sure what the best approach is in these cases ... push the issue and try to get her out or just leave her alone?  She tends to shut down when she's upset and she's reluctant to tell me if something is going on.  In fact, I was supposed to go see her tomorrow and bring her a meal, but when I called her today she said it wouldn't be a good day for a visit because she "wasn't feeling well".  (She's the healthiest person I've ever known ... she's not sick.) 

I'm going to try to call her husband tonight after she goes to bed and find out what's going on.  It's the only time I'm able to speak to him when she's not around.  Seems like every conversation anymore is a touchy subject. 

Thanks again - Leslie

DKW65

I am also new to this.  My story is almost identical to yours.  However, my sister and I both work full time. My mom was just diagnosed officially in February, 2022.  She had COVID double pneumonia in December 2020 and was never the same after that. She was checked out physically from head to toe as we watched her mental state decline.

I am writing to let you know I feel your pain and I am interested in seeing the responses you receive.  Any and all help is appreciated.