Ritasalinas Asked November 2020

"What am I supposed to do today?"

Everyday my Mother who is 86 and living alone calls me everyday and asks "what am I supposed to do today?" I tell her she needs to make herself a cup coffee, get the newspaper from the front door, make herself some breakfast and take her morning medication. She then calls and asks me if she "is safe at the place where she is". She is at home, a home she has lived in for 18 years. She thinks she is in someone else's home and I have to describe to her furniture, carpeting, etc., to assure her it is her home and she can relax.

These calls repeat throughout the day. She is treated by various doctors but she is keen enough to get past their mini tests and will not accept any discussion about her having dementia. She has lots of alternatives, such as long term home health insurance, money to move to assisted living, or live with me in a new home. She always says why do I have to make that decision know, I'm fine. In the meantime, I'm working all day and speed home to see her after work, make her dinner or take her out and then spend hours afterwards paying her bills, looking for things that don't make sense like paying $10,000 for dating service or refinancing home , purchasing crazy TV productions, cleaning her house or watching TV and trying to explain what is happening as she cannot follow any storyline or news.

I'm 60 and can't keep up the pace and my house is falling apart. My husband is working and takes care of two homes, four cars and all the animals. He is wonderful and supportive but I don't know how to move forward for all of us. She lives in a deed restricted community that will not permit us to live with her and my home is too tiny for all of us. I think we need a house with 3 bedrooms where we can live together and have room for a nurse in the future if necessary.

I have a POA but I don't know how or when to activate it. I'm doing all the finances and I'm the executor of her estate and will inherit her home so combining our assets for one bigger home seems reasonable, but is it? She says everyday that she is confused and asks me to do everything for her, but resists any long term changes. How do I begin? Where do I begin? Any suggestions????

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I just placed my mom in residential assisted living care home one week ago. Like your mom I got the same questions everyday. It’s like their minds grasp on something, they angst over it and then they’re on to something else totally forgetting about the prior request. Meanwhile we’re still trying to accommodate their first request. My mom is ten years older than your mom and I am ten years older than you. Please do yourself and your husband a favor and look into assisted living. I have seen a huge difference for the better in just one week. While I’m still in the chaos of cleaning out the house, I know mom is taken care of and is getting her meals, meds and sleep at appropriate times, while having the advantage of co-mingling with residents. Good luck with your mom.

Helpful Answer (13)

I support what has already been suggested to you. I need to point out that you and your husband seem to have a very high tolerance for chaos, based on you even considering moving her in with you and your husband, when both of your plates are already slopping over. Please step back and take a realistic assessment. Even IF you were able to purchase a home with combined monies (which I would not myself recommend or do) her care will only get more intense. Then, if you needed additional in-home care for her while you were both working, caring for 2 other homes and animals, or decided to transition her to a facility, where would THAT money come from? Not your own bank accounts, I hope. It would be tied up in the house (unless your mom has more resources than mentioned).

It would be a wise investment to spend 2 hours talking about possibilities with an elder law attorney who did estate and Medicaid planning. Laws in each state differ so please don't make any financial moves until you get professional advice from someone who will learn of your and your mom's entire financial landscapes.

My MIL lived 6 miles from us and we were checking in on her daily, although not always in person. We discovered that she was not remembering to eat or take her meds, even when we were prompting her by phone. She'd hang up and immediately forget. We transitioned her into AL and soon after that she needed LTC. There is no point in exhausting yourselves trying to keep her out of a facility if it results in your own burnout. Please read (on this forum) some of the thousands of posts by well-intentioned adult children trying avoid the very difficult decision to place their parent somewhere they don't want to go but badly need to be for everyone's sake. You will get excellent insights and advice here...I hope you listen to it. I wish you all the best and much wisdom and peace as you work through it all.

Helpful Answer (11)

The answer lies in what YOU need to do today.
You need to begin now to address two things. One is to discuss frankly, just as you did here with us now, your Mom's condition, WITH HER DOCTOR. As POA you can request that she take now the REAL tests for Dementia. It is important to get staging and other things.
Then you should attend the attorney who did the POA (after getting the needed letters and diagnosis to take care of the POA, the bank account set ups. You will have to keep careful records and diaries of everything. Your Mom is in danger now (and the dating site 10,000 proves that). The Lawyer gets paid for or reimbursed from your Mom.
AFTER you take care of these two things you can decide what the disposition will be for Mom in terms of her LTC insurance, possibly staying in home a bit more time, moving to you, or Assisted living. The good news here is she has the assets to afford choices. The bad news is she will need help with these choices, and it is unlikely that any of the choices will completely satisfy her. It is so tough, but try to take it task at a time, one thing at a time. Start with the diagnosis. Until you have that there is very little you CAN do.

Helpful Answer (10)

All good points from Alva, and I wanted to emphasize the answer to "where do I begin?"... You need to begin with YOU realizing your mom is not living independently, she is living 100% DEPENDENTLY on you. She can't even begin her day without calling you for prompts through the activities of daily living. No responsible Dr should continue supporting this farce. Be aware that even with mild dementia your mom will still have the right to make her own decisions, so carefully examine your POA document for the criteria in which you can activate it. As Alva says, since mom has the funds use them to get a lawyer to help you intervene ASAP. Taking that first step will help get the ball rolling.

Helpful Answer (8)

Dear Rita,
I am an independant Elder care companion. You can find people like me on sites.
Agencies are horrible. !!!!!!!
I have been a companion for several wonderful people for over 6 years. I visit, games, crafts, make meals, go off on adventures with them, help with light chores and doctor appointments etc. I recently started paying bills etc. (At Family's request)
If your Mom is hesitant, as they can often be. When you find the RIGHT person introduce her as a friend of yours. Little fibs are sometimes needed.😊
Start slow, twice a week for a few hours until your Mom starts to look forward to her visits.
Always interview people off property. Check background!!!!!
Hopen this helps
Bobie D

Helpful Answer (6)

You can not/ should not make a blanket statement that "agencies are horrible!!!!!!"
I had some very good caregivers from agencies.
There are advantages and disadvantages of hiring through an agency and there are advantages and disadvantages of hiring privately.
There were some instances where I HAD to hire privately and there were some where I HAD to have a caregiver from an agency. Not all circumstances are the same.

(6)

It sounds to me like your mother needs assistance. She may decline over time. Can you hire an aide who can take her places, help her get dressed, etc. and will also help you out. Adult day care may also be available in your area, which can pick her up and take her to a place where there will be activities. If she will accept it, talk to her about moving to an assisted living facility. My mother lives in an excellent continuous care facility where they have independent living, assisted living, memory care and skilled nursing units. Social workers advise if the resident needs to move to a unit with more care (such as memory care). My mother started in independent living and is now in memory care. It has taken a huge burden off of me. You mentioned having her live with you. If you do that, plan on having an aide to help.

Helpful Answer (6)

I agree. Adult Day Care may be a solution. It may really come down to moving her into an assisted living facility. Lots of other people, activities, local outings may just be what she needs.

(2)

I haven't read through the answers yet, but DON'T move her in with you. My mom is 88 YO, I'm 59, and my husband is 62. My mom lives in Senior Independent Apartments, but moved in with us from March thru June at the beginning of the pandemic. (The facility had closed the dining room for an abundance of caution.). When they reopened the dining room and beauty shop she moved back home. All was ... OK ... until they had a couple of cases in the facility. She wanted to come back here. (The cases rose to 8, and have now dropped down to three. No hospitalizations, no deaths.) So she's been here 4 weeks this time. My fingernails are chewed off, my husband and I have both gained weight, and we are feeling depressed and stressed. I LOVE my mom, and so does my husband. For my happiness, his happiness, and my sanity, I need to move her back to her place. A home health aide can visit once or twice a day to remind her to take medications. The facility where my mom lives has a dining room (and will deliver food to her apartment), a nurse navigator, etc. You have to save yourself and your marriage. Just my two cents.

Helpful Answer (6)

And, I forgot to add, I accompany my mom to all of her doctor's appointments (pulmonologist, cardiologist, endocrinologist, dermatologist, and general practice.) She has signed releases at all of these offices that allow them to discuss her health, insurance etc. with me. I have Medical POA, and am executor of her estate. I prefer her to spend her money on her own care rather than leaving me an inheritance.

(1)

It sounds like it is unsafe for her to live by herself and one day she will wander and get lost, or hit by a car. Trust me it can happen and very suddenly. She needs around-the-clock supervision of some type.

Helpful Answer (5)

You might start by having her seen at a memory care clinic and get a full neuropsych evaluation. She may still be in good enough mental condition to "beat the testing' but it will give a good assessment of her baseline at least. To start the long term care insurance, she would need to be faltering on several ADL's and the testing would help confirm that. You tell her it is to see if there are any recommendations that might help her. We did this with my mother who was found not to be competent of making her own decisions. For my inlaws, my mother in law was clearly in the throes of ALZ dementia. My father in law however, was found to have cognitive impairment and we were urged to supervise him but he was not determined not to be competent until he had declined further. He had mostly been agreeing with us on most things which was good because the POA did not go into effect until he was no longer capable. Your mother is not living independently. You are facilitating everything. When she says why does she need to make changes, since things are fine, see if she can tell you how does she think she would manage if you did not take care of all you have been handles. How does she envision things moving forward in the further? Maybe that starts her thinking more practically.

I know it seems like if she could move in with you and your husband it would be much easier and it would be for a while because currently you are spread so thin. But as she declines, it will get much worse. In home care for an nurses aide costs $10,000 a month for 24 hours. A live in would be cheaper but still costly. A nice assisted living facility with option for memory care would cost about that much and would provide all her needs, with in house doctors, activities etc. Covid will not be around forever. This would also give you your life back so you and your husband can plan your own lives while making sure she is cared for.

Helpful Answer (5)

I too am 60 and my mom’s life has dictated my world. I discovered that I was doing everything to “ let her live independently” but truly sacrificed my life. My mother declined while living alone. Eventually fell and laid on the bathroom floor for 14 hours. She refused to wear her Lifefone around her neck so she was stranded...I moved her into assisted living after the hospitalization from the fall. I now have a piece of mind. Her dementia level is considered moderate. She is angry with me on “ putting her in this hell hole”. I am a RN and the assisted living is clean and very much patient focused. The cost is 7,200/month. They check her every 2 hours in her private apartment. Covid has reduced the social aspect but this will not last forever. I can now feel the other shoe will not drop...

(7)

They CANNOT make decisions, I don’t even give my H a choice for lunch anymore. DO NOT commingle money, this could be disastrous if she ever needs Medicaid. These can live 20 years with the disease, and can easily out live their money.
if she is lonely and scared at home put her in AL. We did this with my dad and he surprised us by loving it. He even got a lil better b/c of socialization. Now he he has a girlfriend and is very happy.

Helpful Answer (5)

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