Dealing with early stages of this awful disease

vmngpetro

Hi I am new here and appreciate this type of forum as we are all having to adapt to this disease. Before we moved out of state we found out that our MIL had a brain tumor. We never had a conversation with her doctor but we could tell there were signs of slight memory loss. My husband made the move out of state before the rest of the family, but he would call his mother almost daily. They did not have a great relationship, but she had lost her husband (she wasn't happy in her marriage) and he could see she was lonely (at this time she was 74). I do not have a good relationship with her, but would go help her when my husband needed me to. Forgot to mention her other son does not want to have a relationship with her (this is a big mess). Fast forward the rest of our immediate family moved out of state. Last October my MIL stated she is miserable, has no life and wanted to move to be near us. My husband of course said mom are you sure because she has 4 younger grandchildren from her other son. She stated I don't get to see them so I have nothing here. Conversations continued and she decided to sell her home and move closer to us. During this time we found out that she was getting lost when driving in area she has lived in for 20+ years. She moved here in March and a couple of months in she stated she wanted to move back. It took a bit to get all her finances inline and find a neurologist. We had noticed she was forgetting things and she was blaming it on the tumor. We finally got her into a doctor and got the Alzheimer diagnosis. The doctor said the tumor is so tiny and it won't be an issue. At least this explains the forgetfulness but her constant depression, saying the same thing everyday and not remembering is becoming an issue for my husband. She tells my husband she wants to move back but she is not able to drive, she isn't taking her medication that she is supposed to and financially she is double paying and paying things she no longer has. We do her medication so it is set up for her AM & PM and my husband tries to help her by saying don't pay anything until I get there. She is very capable of having a good conversation and her scores for all that are high, but in her testing her memory is a 3. She has been on an antidepressant way before her issues, but I do not think it is helping her and she is not taking her medications consistently. My husband goes over to her house everyday after work and he sees some of the daily discs still have pills in them. If you say anything about it, she says I am good with my medications (she is not). During these daily visits by my husband, she tells him she wants to move back because she has no life. He explains the reasons she shouldn't go back:

1. no support system
2. she sees him everyday
3. she cannot drive

We know things are getting worse with her, but the constant grind everyday of her stating the above and him stating the reasons and then she ends up in tears. She is a retired teacher so I am going to see if the near by school needs someone to read to the students since she very capable in doing that, but I am at a loss of what we can do to keep her busy. The senior centers around us only have Bingo, card game days, light exercise and she is not interested in doing any of those things, but how do you get her to be social? She is a bit socially awkward and asked to attend a church but she was texting us 20 minutes later to pick her up because they were not friendly. She says she wants to meet people, but her actions are just the opposite. She says she wants to watch our son wrestle, but she is bored (wrestling matches only last 6 minutes and then the next match could be 2 hours later). It is definitely a challenge for my husband because he works full time and I do too.

Sorry the long post, but I felt I needed to explain. Any advice on what you have found to be successful would be greatly appreciated.

SusanB-dil

Hi vmngpetro - welcome to 'here', but sorry for the reason.

3 important things come to mind. First is that she should not be alone at this point. She is not taking her meds, and her finances are getting messed up. Second is paperwork. Is DPOA and HIPAA accesses in order? And third is the driving, and good she is not. We took MIL off the road when she admitted to getting lost. Turned out it was more than once, and then she admitted she came to an intersection and forgot what to do.

DPOA and HIPAA can be done by CLEC (elder-care lawyer). Temporarily, HIPAA can be signed by doc's office. If you don't have that, you'd be able to tell her doc what's up, they just cannot reply back.

As far as living alone, with the meds and finances, she is no longer capable of handling either. Obviously, this means that any meds aren't helping. If DH has DPOA, the finances need to be under control. MIL has utilities on auto-pay, and no longer has access to her accounts. Same here - she wasn't paying some things, and others were paid twice. She was starting to talk to phone scammers more and more, so we turned the ringer off the phone! And... a trusted family member and family member's daughter was stealing from her. Excess 6 digits, gone.

At the very least, please look into home-care for MIL, or MC, or at least someone to be there, at least for meds and stop the financial issues if DH is able to... before she loses so much. And check her nutrition. Is she eating properly? Are foods out-of-date?

Hope I've given you a place to start. None of 'this' is easy, more especially when the relationship isn't a close one to begin with.

vmngpetro

Thank you for your thoughts. We are trying to let her have some independence, but we have told her numerous times that we need to take her meds away and give them to her. She is very resistant to that idea. My husband has medical and financial power of attorney so we are good with that. She is eating as my husband takes her shopping weekly and checks her refrigerator to see if she has eaten daily. We are trying to figure out the finance thing because she gets all bothered when my husband logs onto her bank accounts. Oh my goodness yes the phone scammers…. she has not gotten caught on any of those yet. We have told her she doesn't need to worry because all her utilities are on auto pay. She has an ex-DIL that is the mother of her granddaughters that has gotten some money from her. We have stopped that but she forgets that she has ordered clothes for the granddaughters. In 2 months she has spent $1100 and some were duplicates. She gets very agitated when he questions it. We don't want her not to be able to do that but control needs to be taken. I suggested that we take her credit cards and checkbook from her and she can log on and put things in the cart so when my husband goes over they can review it. The depression thing is a huge concern because it is like groundhogs day about the wanting to move back and it agitates her and her persistence is wearing thin on my husband. She is still capable of living by herself as she doesn't use a cooktop or stove, so the microwave is what she uses to warm up meals. I know she is going to get worse and when that happens, she will probably need to move in with us. I do not believe our house will be her last stop but the cost of a memory care facility will be a challenge for her so living with us until we cannot care for her anymore is the option we will be working with eventually.

Do you have any suggestions on socialize?

H1235

It sound like she is no longer safe to live alone. I would strongly recommend looking into Al facilities. There can be a waiting list. You said she says she wants to do things then turns around and says she doesn’t. I wonder is this could be because she is confused and doesn’t know what to do or how to handle the situation. Depression can be a part of dementia. My mom suffered from depression for years before she was diagnosed and we are still struggling to find the right medication for her. If your husband is hesitant to move her to AL could he ask her doctor for his/her opinion, or if she is even safe to live alone? With unlimited access to her finances she could loose everything! Your DH needs to step in. People with dementia often have anosognosia. It is the inability to recognize their symptoms or limitations. It makes things very difficult. Because of the anosognosia I doubt she will ever come to you or DH and say she can’t live along anymore and she needs help with finances. It’s just not going to happen. If DH has a DPOA then he has an obligation to keep her safe. That will probably mean taking away some of her independence and she will probably not be happy about it. With the DPOA I signed all the paperwork for Al. You do not need her to agree to the move. It’s not easy! I have attached a staging tool and and an article titled understanding the dementia experience you might find helpful.

https://static1.squarespace.com/static/6372d16ea4e02c7ce64425b7/t/63f7b80d80d8aa3e3aa4a47d/1677178894184/DBAT.pdf

https://alzconnected.org/home/leaving?allowTrusted=1&target=https%3A%2F%2Fwww.smashwords.com%2Fextreader%2Fread%2F210580%2F1%2Funderstanding-the-dementia-experience%23hlangandcommun

psg712

Agree with those advising that she should not live alone. This is a very hard stage, when the PWD still has some capacity for actions and decisions but does not have the reasoning and judgment to make wise or safe choices. And she cannot understand her need for help.

She will be unhappy about it, but to safeguard her finances you will need to take the checkbook, debit and credit cards and likely her internet access. Have mail forwarded to your house and handle the legit bills there. If online shopping for the grandkids is important to her, perhaps you can do it together.

Taking over her medications is even more important. Don't leave her anything, not even Tylenol, that she can accidentally take incorrectly. She will resist, but you are safeguarding her life.

She may not use a stove today, but tomorrow could decide on a whim to boil some eggs … then leave a towel near the burner. And fires can start in microwaves too. This is so hard. I wish you the best as you consider what is needed for her safety.

harshedbuzz

@vmngpetro

I agree with the others. The important tasks for now are:

Getting the legal ducks in a row. I would recommend a CELA for this. If MIL doesn't have a robust LTC policy or significant wealth, you need to start planning for her to qualify for institutional Medicaid immediately and hope her generosity with the grands and former-DIL don't delay qualifying. There's a 5-Year-Lookback for financials with fairly stringent rules to avoid folks transferring assets outside legal means to qualify for Medicaid assistance. Ideally your DH can get the dPOAs he needs; otherwise, guardianship/conservatorship will be necessary which takes more time and money.

She absolutely sounds as if she is no longer safe to live alone. This is one of those things that's "OK until it isn't OK". Sadly, there is no technology that replaces supervision by a human being.

It sounds as if you and your DH are making some fairly common mistakes in your new role as caregivers. No judgement intended— I did all the same things, too, before folks here suggested a different approach.

The first thing that struck me was "During these daily visits by my husband, she tells him she wants to move back because she has no life. He explains the reasons she shouldn't go back". This is a violation of the cardinal rule of Dementia Fight Club. One should never try to reason with a person who has a broken reasoner". I struggled with this. It's hard to reverse roles with a parent who on the surface looks like they always have and seems OK at times. The level of care needs to be appropriate to your MIL when she's at her worst and not set at some aspirational or having a good day level.

I can appreciate the desire to offer a parent as much autonomy as possible, but this has to be weighed against the risks. She's not capable of independence. Taking control of her life is not something you are doing to her, but for her. Dementia is to blame.

Your MIL is not going to be happy about any of this. Her current baseline doesn't sound happy— many PWD don't have the capacity to be what we'd consider happy. Sometimes safe is as good as it gets. If you get to content, you're knocking it out of the park.

I found this phase of dementia the hardest. Dad (and mom) had avoided him being diagnosed for nearly a decade as dad didn't want me all up in his business. TBH, I didn't want to be either. But I didn't force the issue soon enough and dad lost $360K day-trading while mom deluded herself into thinking he wasn't "as bad as I thought". I actually found when I finally put my foot down and asserted control in a more overt manner, dad actually calmed down about it.

Since it doesn't sound as if you're looking forward to her joining your household, I would encourage you to do what it takes to qualify her for Medicaid. You may be able to do a short period in a hospitality-model AL with medication management and meals before transitioning her to a secure MCF.

That said, you mention difficulties with social interaction. Most PWD lose their social filter which can tank their ability to socialize with others who have not suffered a cognitive shift. One risk of an AL is that the other folks living there might shun her if she behaves like a person with dementia— repeating herself or saying the quiet thing aloud.

Good luck. This is tough stuff.

HB

Emily 123

Hello,

It's easy at first to misguesstimate the extent of the losses caused by the disease because social ability is retained for a long time in Alzheimer's. She may look and talk like she's on top of things, but inwardly she's struggling.

This Youtuber talks about this stage compassionately:

https://www.youtube.com/watch?v=awBm4S9NwJ0

Stage 4: https://www.youtube.com/watch?v=coiZbpyvTNg

Early on, as we learn to work around the losses caused by the disease, we hesitate to take away autonomy because the person seems like they can still self-navigate, and we think that activities will keep a person sharper. But issues are arising because the disease has eaten away at your MIL's brain's connectivity—it's not going to come back. Day to day tasks are now hard, and new information she sees or hears can't be retained. She's failing all day long at things she used to be able to do.

Because she's at a stage where the disease prevents her from retaining new information (and she may have memory gaps of months or years), I wouldn't ask her to navigate new social situations on her own without going along as support (church, reading to kids). Social situations may be present questions she no longer can answer ('when did you move here?' Where do you live?") and she's not going to be able to handle all the information coming at her in a conversation when she can only handle one thought at a time.

The gaps in her memory mean she might not have any awareness of what's occurring (anosognosia). While this unawareness may make her think she can (and wants) to do as much as she used to, the truth is that it's better to take things off her plate. Usually it's easiest to take over the responsibilities without a fuss rather than discussing it, since the anosognosia means they won't see the need for your help. Trying to show her how her reality is wrong with examples of what hasn't been done correctly will be confusing and upsetting, because she can't recall these things—at this point she's in tears. When she becomes confused or upset it's time to back off, divert her attention away from the subject, and revise your approach. Things go better when the person with dementia's calm, so work in the background to make sure things are done.

I found the attached helpful:

understanding-the-dementia-experience.pdf

Tam-Cummings-LLC-Handouts-2.pdf

Careblazers-How To Convince Someone With Dementia They Need Help:

https://www.youtube.com/watch?v=ncKhXQtnyfI

https://www.youtube.com/watch?v=rO50pVUOlbE

Teepa Snow Series:

https://www.youtube.com/playlist?list=PL2E2lPBsUeBjA1Utglo8q6yANAijEf8cX

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