Seeking some solace and advice

beck

Hello, my sister and I are in the proverbial weeds with our 79 year old Mom who has recently been diagnosed with Alzheimer’s. She has been showing signs of short term memory loss for the last few years and this past 6 months it has noticeably deteriorated. We have been at the mercy of a very slow diagnosis but finally had an assessment in October with a follow up this past month where the doc told her she had Alzheimer’s. She has accepted this but has decided that it is very early on and she is fine. She lives with her partner of 10 years who is 82 and has over the past year asked for help. We set up a friend to stay with them three nights at week (they live on an island that is 4 hours away from us and requires a ferry) and that was working until this past weekend. She has decided that she doesn’t like him and no longer wants him coming. Her partner is afraid to tell her that he is burned out and that he needs his days to be his own. He has asked us to get the structure in place so he can still live with her but leave during the day. It is all so hard. My sister has just left her and is on her way back to the city. Our Mom is adamant that she wants to be in charge of finding people to help her and if her partner doesn’t think he can be there for her he can move out. Not sure if this is all bluster. We shall wait and see. Our hope is to keep her on her own as long as possible but she will need someone there to be safe. I have reached out to the few services on the island and they are some help but not enough for what we likely need. The doctors were not helpful as far as guiding us to what is a reasonable amount of care given she lives on an island, big house, farm etc. thanks for reading and any insights. ♥️ Most of this long post is really an act of getting this down to help manage my sleepless nights and crippling anxiety. We love our Mom so much and want her to have the life she wants and the agency to help make decisions but that tactic is flailing at this point.

JMack88

First sending you warm fuzzies. You need them! This is really difficult. My mother is very particular about the people who come to the house. So I somewhat understand the difficulties when she suddenly changes her mind and doesn't want that person anymore. In our case, my father passed away and then my sister and I realized something was going on with mom's memory. We've been able to work it out between ourselves and some cousins and close family friends so someone is with her most of the time. Luckily I can work from home and be with her during the day. I can't imagine how difficult it would be to cope with long distance and having to hear from others about the problems. You are not alone, and you came to a great place to share and get help.

M1

Welcome to the forum. Lots of questions here. First however, are your legal ducks in a row? You or your sister need to have power of attorney for your mom for legal and financial matters. Because: as much as you would like to defer to her wishes, the hard truth is that you cannot and should not. Safety needs to drive the decision making, and she does not have the capacity to make rational choices for herself. Read about anosognosia, it's a feature of the illness that she cannot appreciate her deficits-very different from denial.

If you don't have power of attorney, you need to talk to a certified elder law attorney (look at nelf.org). These folks can also update wills and assist with long-term financial planning should she need to finance memory care in the future.

The logistics of remote care on an island sound very daunting. If her partner is already burned out, I would not be optimistic about being able to maintain that. Care in all rural areas is very hard to come by, and i am just 35 miles from a major city.

sorry you are facing this, but you have come to a good place for support.

dawnmorris

Starting to look for support as a daughter/part time caregiver. Doing Moms bills but she wants to take it over but just cant. How do you tell her she isnt capable without her getting Mad. Seems like she has been getting mad a lot. She is hoarding and hiding money. My sister and I have POA but haven’t had to make any real tough decisions. We’ve just been “helping” with bills, shopping etc. she lives alone (Dad just passed in Sept, she moved to assisted living and after 2 weeks decided she wanted to be back home, alone in her house now)

M1

Hi Dawn. You may get more responses if you start a new discussion.

I was able to convince my partner to let me take over the billpaying by cheerfully teasing her that I was now functioning as her executive assistant. I also told her (truthfully) that most people now expected online payment. She was never very computer savvy and therefore willing to cede it. Where i had to be most vigilant was in keeping her away from mail and telephone solicitations, she was a sucker for any animal charity,Veterans, fire, police, etc.

Sorry for the loss of your dad. Many times the degree of dementia impairment becomes clear after the loss of the spouse who was propping them up. I'm sorry she didn't stick with the AL any longer. Do you have power of attorney for finances and health care? You are going to need it.

Sarah Marie

This is my first time on here. I'm helping take care of my mother. It seems to be taking forever to get a full diagnosis. She constantly having delusions, and their not usually nice ones. My mother has always been a force to deal with. She could scare the crap out of me before the dementia set in. Now I seem to be the one person, she blames for everything. She quite frankly scares me. The last altercation she threatened to shove a knife up my ass. Then told one of her delusions that she didn't want me to commit suicide yet, but she's close. I know she's not in her right mind, but my Lord. It's been 6 months of this. My sister in law has practically moved in. Thank God, we both work two jobs which are close enough flexible enough we can run back and forth. I have one sister who comes in for several days every six weeks or so. She's awesome to give us that respite.!

MN Chickadee

Beck, I would be touring memory care facilities near whoever is the Power of Attorney for her and get on waitlists so at the very least you are prepared if/when there is a crisis. If there is no POA get to an attorney asap. I would not expect her current arrangement to last long even if you found some day time care, given their remote location and her partner's age. At his age the full time caregiving or anything close to it will start to affect his own health and he has already indicated he needs out. I would take this to heart and put things in motion. If he wants to continue to live with her he will likely have to move off the island, this is just the way it is. Your mother's brain is too affected to realize its own deficits (very common with dementia) and you will have to use therapeutic fibs and work behind the scenes. You can't let her call the shots with money, medical, or logistical decisions because she does not have the capacity. Whoever is POA has a duty to keep her safe in these ways. Some folks on these boards have to have the parent come stay with them under a ruse (a visit for the holidays that keeps getting extended for one reason or another, or there is a problem with their house and they can stay at this senior living compound while the pipes or furnace get fixed etc.) Rarely does it work to explain to the PWD the facts of why they need help or care and have them agree to changes; it almost always involves therapeutic fibs and finding workarounds.

Smilinpj

HI Beck,

It sounds to me like she has reached the point where she needs to 'downsize' as living on a farm, alone or with an elderly partner who would not be able to handle this disease is not feasible at all. One of the hardest things for someone not with the person all the time to understand is exactly how debilitating this is and what point she is. The early she can downsize and be used to new surroundings, the better. Staying alone is more than likely out of the question. I am so sorry you are facing these decisions. It's hard so be sure to keep reaching out for advice. ((hugs))