New and needing advice

BabyAngel

 Hello, I’m sorry if this is the wrong place to post this but I’m new to the site. I can’t seem to find how to add a discussion… 

Anyway, I have a mother-in-law who is what I believe is the onset of Alzheimer’s. She has an appointment 12/15. 

2 questions: 

1. How do I convince her to move in with us? She lives with my husband in Alaska (temporary 3 years away for work) but he is working and all by himself. She would be better here with me, my mom, and her grandkids but won’t commit to moving. She is also a hoarder so convincing her to clean out the house is hard and frustrating. 

2. I’m overwhelmed, sad, mad all at once. I have no idea what actions I should and shouldn’t be doing…is there any advise from the group on what you think I should know and do now? She’s at the point she asks the same questions over and over again or tells the same stories over and over like a never ending Groundhog Day loop… I act surprised each time she says it and I’m always upbeat and positive but I’m worried about her and want to do the best I can for her.

Cjberry

It’s a hard rough road!! My mother same stories over and over, same questions over and over!! Very different from who she was, refuses take bath we fight about it constantly and she gets pissed at me!! Find something to relieve stress, cause they can’t remember who you are occasionally and is a very tough pill to swallow!  Hope you the best of luck

BabyAngel

Thank you. Luckily she’s sweeter now than before…I bought a few books to read so hopefully that Provide some insight

M1

Welcome to the forum. Does your husband have a durable power of attorney and healthcare power of attorney for her? If not that’s the first thing to address. A certified elder law attorney can prepare those and give you advice about getting her qualified for Medicaid if she’ll need it for placement in the future (see nelf.org). Without poa, you can’t force her to move against her will. You should make a detailed list of behaviors you’ve observed to give her doc, many people with dementia will deny all problems and insist they are fine (google anosognosia). A list of questions for the doc is appropriate too, especially about driving safety, the hoarding,  and whether she can live alone.

The hoarding is worrisome and would suggest she may be more advanced than you think. Look up tam cummings’ stages of dementia for some detailed descriptions. good luck, I’m sure others will chime in too.

Emily 123

Hi BabyAngel,

I would recommend that you do a good browse of the threads here.  So very often with the disease an elderly parent is invited to live with family and yet the challenges of dementia are not just forgetfulness or memory loss, but all the functions controlled by the areas of the brain affected. You already notice the circular conversations, but there's so much more that may be going on at this point. It really is a 'tip of the iceberg' disease-by the time you become concerned, a decline is usually well underway.  If her memory is such that she can't remember what she's just said, she is probably not too safe in the home (maybe taking meds multiple times or not at all, leaving pots on the burners, not paying bills, etc). The caregiving is exhausting and really becomes 24/7. You will lose your privacy and free time, and if you work from home you can kiss concentrating goodbye. If you work out of the home--who will watch her? 

A better option might be to get her into care somewhere closer to you, or at least in Alaska if your husband can keep an eye on things. Generally if there's a move into care involved the person's house is sold to fund things.

Here's some threads, but definitely look around:

 https://www.alzconnected.org/discussion.aspxg=posts&t=2147558936

https://www.alzconnected.org/discussion.aspx?g=posts&t=2147558766

This is good:

http://www.dementiacarestrategies.com/12_pt_Understanding_the_Dementia_Experience.pdf

As M1 noted,  losses are experienced by stages.  This list is for  Alzheimer's, which is the most common type of dementia. The progression will be different for other types.  https://tamcummings.com/stages-of-dementia/

  Videos:  https://www.youtube.com/watch?v=u5QMeQpkPhA

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

This is a wonderful forum, I know that you will find good advice and support here from the other posters.

BabyAngel

Hi Cjberry,

No, we do not have a poa so I will start the process. I want her to make the decision where she wants to go before things get much worse. My husband has two other brothers and they both want her to live with them (even though the have zero involvement with her…my husband is living with her) but she doesn’t like going to their house.  I’m afraid they will try and fight for her. I want her to be where she wants to be. I know I’m better for her but it’s her decision.

Thank you again. 

BabyAngel

Thank you, Emily. Yes she is already taking medicine multiple times during the day. I’m so sad right now.

mommyandme (m&m)

When my mother was in earlier stages, she wouldn’t move.  My brother and I were trying to manage her care from two different states.  24/7 care is very difficult to manage from afar which we did for about 6 mos. 

She did finally agree to move, strangely enough, when she was mid stage 5.  I’ve got her here in my state now, in a home right behind ours. I basically live with her but have help come in for about 35 hrs a week.  She’s now late stage 6.  

I guess my long winded point is she may become agreeable but without POA you have no choices in the matter. 

Good thoughts are sent to you and yours as you begin this journey. 

PS: you’re in the right place.

King Boo

I am going to be straightforward.

If you have children in the house and have not yet done hands on dementia caregiving, you have no idea what you are inviting into your house.

It can be done - with a team, money, and a game plan to protect the children from the more bizzarepossible manifestations of dementia (hallucinations, paranoia, for a few).

It's really NOT her decision if it is dementia.  It has to be the care situation that is best for her.

If she has 2 other sons who wish to provide care, I'd seriously consider that.

Also - she's better off with your husband while he learns and assesses her impairments.  There are many threads of very put upon Moms and wives who have husbands who 'don't get it' because they don't do the care.

If she is a hoarder, she isn't going to stop hoarding because she is in your house.  It is a psychiatric disorder, an anxiety disorder.  And anxiety disorders plus dementia = pathology to the max.

Get throughly acquainted with the stages of the disease, the care needs, the finances available, et.

Good luck.

harshedbuzz

BabyAngel wrote:

 Hello, I’m sorry if this is the wrong place to post this but I’m new to the site. I can’t seem to find how to add a discussion…  

You nailed it. Welcome to the best board nobody ever wanted to join.

Anyway, I have a mother-in-law who is what I believe is the onset of Alzheimer’s. She has an appointment 12/15. 

That's great that you're so close to a medical appointment. Will MIL be seeing her PCP for a preliminary screening or is this an actual evaluation with a neurologist/memory clinic? Ahead of time, the person who is going along with her to the appointment should draft a written list of behaviors, concerns and questions they want answered as well as a list of her current meds. Ideally this should be shared via a patient portal with a physical copy slipped to the assistant who checks her in. This strategy avoids the needs to throw MIL under the bus. The person attending with her should sit behind her, so they can non-verbally signal confirmation or no to the medical team. 

You might not get answers on the 15th. It's possible she may be turfed to a specialist or that tests need to be run before a follow-up appointment in a month or two. 

2 questions: 

1. How do I convince her to move in with us?

You don't. Rule number one of Dementia Fight Club is that one doesn't try to reason with a person who has dementia. Families tend to first notice glitches in memory as their LO progresses, but just as critical are the deficits in higher order reasoning and executive function skills. Plus, even if you did get buy-in on a move, odds are real good she'd forget by morning. 

If she has dementia and has progressed to a degree that she needs care and protection than you take whatever steps necessary to make it happen with the least stress to her. In your situation, bringing her to your house under the guise of a visit makes sense. Then using her POA/assigned guardianship, you hire someone to clean out the hoarding situation, stage and sell (if she owns it) while she's where ever it is you live. When she asks to go home- which she will- you agree as soon as possible. You can blame a delay on COVID, no flights, the sewer line is being repaired, the doctor wants you to stay for tests. 

She lives with my husband in Alaska (temporary 3 years away for work) but he is working and all by himself. She would be better here with me, my mom, and her grandkids but won’t commit to moving.

This doesn't sound ideal. Many PWD no longer enjoy their grandchildren and can be very disruptive to their lives. One PWD was so annoyed by a younger grandchild, she sprayed the poor child with what she thought was insecticide. A few others turned on older kids accusing them of theft, abuse and all manner of crimes.

PWD can become very "attached" to their primary caregiver and will compete rather obnoxiously for their attention. If you are also caregiver to your mom or still actively parenting it may be difficult to give them the attention they need. 

 She is also a hoarder so convincing her to clean out the house is hard and frustrating. 

Save your breath. She isn't ever going to bring order to her home- she is past the ability to do that. It's best your DH makes a pass through the place getting out important papers, hidden cash and family heirlooms and then turns the task over to professionals. Expect her to bring this behavior to your home, btw. Both my dad and aunt, who'd never been particularly acquisitive people trended into "hoarding-lite" bringing home weird scraps and shiny objects. 

2. I’m overwhelmed, sad, mad all at once. I have no idea what actions I should and shouldn’t be doing…is there any advise from the group on what you think I should know and do now?

I think the most important piece is to gain control for going forward. Ideally a CELA might be able to convince her to name you and DH as her POAs for medical and financial decisions. Otherwise you're looking at guardianship which is more costly and time consuming. This would also open the stakes up to the brothers who could contest or compete to be named. I am not sure how it works where you are, but when my mom's closest sister petitioned to become guardian of their older sister my mom as the only other sibling was given a chance to approve or not. 

After that, the complete dementia workup and move would likely be the next tasks. It is critical that you understand what it is you are taking on. Dementia only goes in one direction and it always wins. It's possible you that things might go well for a time before skills and behaviors make it necessary to rethink MIL in your home. Many PWD shadow their caregivers which is challenging. Some turn uncooperative, aggressive and even violent. Sleep disturbances can slay even the most dedicated carer; incontinence and hygiene are  challenges. 

I noticed you mentioned something about "keeping her happy" as your top priority. That may not be possible. In many instances, the best even the most well-meaning and  competent caregivers can manage is safe; even clean, medicated and fed can be beyond the scope of the task at times. 

 She’s at the point she asks the same questions over and over again or tells the same stories over and over like a never ending Groundhog Day loop… I act surprised each time she says it and I’m always upbeat and positive but I’m worried about her and want to do the best I can for her. 

I think you have a great attitude. I would encourage you to look at this quick piece-

12 pt Understanding the Dementia Experience (dementiacarestrategies.com)

And this-

Stages of Dementia Dr. Tam Cummings

Understanding anosognosia as a concept would also be helpful-

Anosognosia and Dementia - AgingCare.com

wyoming daughter

Harshedbuzz I just have to say - your answers to BabyAngel should be a standard for all who are new to the site.  Every answer is 100% right on from what I have experienced with Mom and what I have read so far, and so well written and easy to understand and follow.  These boards are so lucky to have people like you - thank you and those who have been here for a while for all your help.