Not sure what to do?

DrMC · June 17

Hello, my name is Mary and I moved in with my mother in January and have been her primary caregiver since then. And to put it nicely I am exhausted. I moved in as my brother was moving out after about a year. My brother's wife abruptly filed for divorce in December of 2022 and he was forced out of him home within 48 hours of her filing. Before this my brother already had unresolved issues with anger, selfishness, narcissism etc. = the divorce exacerbated all of this. He moved in all of his things into my mother's already full home. He was a poor caregiver to put it mildly due to his circumstances. Long story short his lack of patience, understanding, and processing of our father's passing (in 2020 from Alzheimers) did a lot of damage to my mother. She has struggled with the mindset that she had to hide things from him. She has experienced panic attacks and paranoia regarding what kind of mood she would encounter with him. For a year he didn't take her to church and she really didn't get out much. All of that has lead to her wanting to go somewhere everyday. She hides paper products in her room. She had stockpiled her good towels in her room.

I have been able to build trust with her and I make sure she gets out and gets to church on a weekly basis. But I have little time for myself. She is not supposed to be left alone or isolated for long periods of time. I am exhausted managing the day-to-day needs for my mom. She always wants to go somewhere, has questions constantly, or we are searching for something that has been misplaced. there is a laundry list of challenges that I combat on a daily basis.

When mom was diagnosed the doctor used the phrase, "just make sure she is comfortable". She is on medicine to slow down the disease but I feel like we are rolling downhill fast. She can still do some things on her own but then there are awkward moments of processing....putting on her depends over her underwear, picking up spray paint instead of bug spray.

I don't feel like I am doing a good job taking care of her and I know I need to consider what else I can do to help both of us.

Emily 123 · June 17

Hi Mary,

It sounds like you're doing well in a very difficult situation.

Caregiver burnout is a legitimate reason to place a person in a care facility.

At this point it doesn't sound like she's able to process information well enough to make safe decisions, and her care needs have outstripped what you can provide. There's nothing wrong with that—Since you're human, and actually need to sleep and do things for yourself, it might be time to think about moving mom to where there's 24/7 staffing to keep her safe. If she's having panic attacks then it would be good to discuss this with her physician, who can prescribe her medication to help with that—it may also help with some of her other behaviors.

I found the attachment helpful

understanding-the-dementia-experience.pdf

As the disease progresses the person will become less able to hang on to information. Because they can't process information well, they can't make good decisions or initiate tasks. Information becomes 'in one ear, out the other'. Their thoughts may get stuck in a loop where they keep thinking they need to have something (like towels) but can't identify that they already have plenty. They struggle to identify objects—they may know they need a spray can for something, but can't differentiate between bug spray or paint—the words on the can have no meaning to them now. They feel like there's something they want to do, but can't recall what, and so may be in constant motion. As the disease progresses it's actually easier on the person with dementia to offer them less choices and autonomy (and even remove them from decision making entirely), because making decisions becomes impossible for a person who can't hold onto more than one thought at a time. They may actually prefer to wind down and spend more time doing very simple things, or even just sit quietly, because 'doing' requires knowing what to do and what order to do things in—that may be beyond their capabilities.

This is good information and includes a checklist for how Alzheimer's progresses.

Tam Cummings assessment tools/AD checklist

https://tala.org/wp-content/uploads/2019/04/Tam-Cummings-LLC-Handouts.pdf

Moderate stage changes: https://www.youtube.com/watch?v=6cZTgG6kDjs

I know you'll find a lot of good help on here…

mabelgirl · June 17

It sounds as if you are doing great. You are giving your mom a life and a safe place to be. Don’t sell yourself short. We take care of our loved ones because we want them to enjoy the life they have left despite the awful effects of dementia. We do what we think is best for them and sometimes forget to take care of ourselves. Part of taking care of ourselves is to recognize and appreciate we are doing our best.
For me I’ve had my mom here nearly a year and it’s not been a pleasant experience but one that was needed for her safety. I am looking to move her into AL as I think it’s best for both of us.
You may want to look into companion care or day center for adults in order to give yourself some time to yourself. It’s important not to loose self.

Praying for your continued successes.

M1 · June 17

Welcome. In addition to the good advice above, make sure your legal affairs are in order. You need to hold durable power of attorney for healthcare and finances in order to proceed with placement in any facility. You also need to consider what she can afford and whether you need to get her qualified for Medicaid in your state. A certified elder law attorney can help with all of this, you can find lists by location at nelf.org.

H1235 · June 17

Welcome! I agree with all the above. Too often placement in AL or MC is looked on negatively. Like you are a horrible person if you put your lo in AL. This is just not true! AL can allow you to be her daughter again. AL can be the bad guys when trying to get her to shower etc. A facility offers some independence from you and a chance for your mom to interact with others her age. In her home she probably sees things she wants to do but can’t (weed the garden etc.) or like you said things she wants to find. A different setting may help ease this stress. There may be a waiting list at a facility so even if you are not ready yet, it’s worth looking into soon. This is all so difficult, we all just do the best we can. No one is perfect here. Give yourself a break.

DrMC · June 18

https://alzconnected.org/discussion/comment/213057#Comment_213057

Thank you so much. I appreciate what you have shared and the insightful words. She is struggling to process information and directions, even simple directions. I have learned that I cannot give her directions with multiple steps - one thing at a time.

And you are absolutely correct I am in a difficult situation. I got laid off from my job and I am my mom's one kid that has time to support her but after 5-6 months I am exhausted. My siblings all have jobs, my brother has a child, one of my sisters is in Alabama and my other sister is about 2.5 hours away - she comes to help often but everyone is busy with their lives and I feel like my life has come to a halt. After mom's most recently doctors appointment I shared my observations and mentioned that we need to look into options for care.

This is an unreal process to me. How this affected my dad was different and my mother was his caretaker (which I think took a toll on her) and we had to deal with my dad's Alzheimers during the pandemic. I appreciate the support and guidance Emily.

DrMC · June 18

Thank you for that perspective. This experience has been rather isolating. Just so I understand AL is assisted living and MC is memory care correct?

DrMC · June 18

thank you, for that guidance. I worry about putting her somewhere because we went through hell with my father. He went into the hospital because he wasn't eating. When his time in the hospital concluded were told that we should put him in a behavioral facility - that was soooooo bad. He started all of a sudden falling etc. and then they lost his jewelry (wedding ring etc.). We eventually got him out of there and put him into memory care and they did ok but that was a disaster as well because he declined so quickly. Somehow when he passed someone took some of his personal items (shoes etc.). As a family we have just not had the best of luck with MC in Wichita/Derby.

H1235 · June 18

https://alzconnected.org/discussion/comment/213094#Comment_213094

That is correct. There is an abbreviation key at the bottom of the page that may help. This site is a great place to go for advice, to just vent or to know you’re not alone. I hope you find some comfort here.

DrMC · June 18

Thank you all for some perspective on all of this. I feel completely overwhelmed by all of this. Sounds like there are a couple of things I need to work on regarding power of attorney etc. We have identified a AL facility but it is in Lawrence and none of live in Lawrence but I would be willing to move there especially if I can find a job that allows for remote work.

I am grateful for the support. I am sure I will be back

DrMC · June 18

https://alzconnected.org/discussion/comment/213096#Comment_213096

This has been helpful. I have been incredibly stressed about my mother's decline and trying to support her. I am not equipped to do this and I am finding it interesting how people say they want to help but then they are radio silent I will see this thru and getting all of the encouragement and feedback gives me encouragement on how to move forward and that it will be ok and that I am not alone.

Not sure what to do?

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