New to group struggling with 94 year old mom

cyclist7531

Hello and thank  you for providing this forum.  I've read through a number of posts and would like to introduce myself and the situation with my mom.  Sorry if this is long. My mom is 94 and has been struggling with dementia for several years however IMO the past 2 she has really declined.  Some of her issues I believe stemmed from a stroke she had several years ago.  Unfortunately, along with dementia her vision was greatly impacted as well.  Her FOV is only about 30% in each eye.  My wife and I are the only family close to her as my brother and his wife exited the area about 3.5 years ago.  I'm 64 and recently retired.  My wife is still employed.  My dad passed away 9 years ago.  My mom was living in the family home about an hour (and up to 2 hours during traffic) away but when my brother moved away it was determined she had to move near us since was unable to drive and realistically the setup of the home was dangerous.  She was resistant to this but moved into an independent living facility about 1 mile away.  In retrospect, she should have gone straight to assisted living then but she was adamantly opposed to this and flat out refused.  I think some of this had to do with what happened to her sister and BIL as they both passed fairly quickly after being moved to an AL facility.  Her sister and BIL both suffered from dementia.  This independent facility is well respected and has a good reputation but essentially it's geared more towards people who are younger and more capable.  For instance, this site has no dining hall and limited social activities especially since covid.  Over the past 6 months my mom has definitely started declining even further We attempted to get her to move again into an AL facility but again she completely balked at this idea.  She stated if we moved her there she would never speak to us again..  We've entertained getting her help a couple times a day but again she will balk at this and make it so miserable for us and the caregiver that we  haven't pressed it.  This occurred numerous times with housekeepers in the past that we had to give up and so I clean.

Part of the issue I face as well is when I attempt to push the AL option my brother doesn't back me up. He'll start out supporting it but when my mom balks  he caves. His response is always "well she's happy here." Of course he isn't here to have to deal with anything.  I am the older one and do have a POA so I can probable force the issue which is where I'm at now.  

I'm waiting to hear back from the doctor as I want a consult with a specialist to discuss my mom's condition.

I've created a list of what I've observed of  my mom's condition and where I have to basically step in and provide for her needs.

A few of the things I've observed (I also set up a nanny cam in the living room that has a view of the kitchen and stove).

- Carries on conversations with imaginary people.  I've viewed this on the nanny cam
- Accuses us of lying and stealing
- Paranoid about  money -  hides it in odd places
- Gets combative verbally when corrected or questioned about something
- Cannot manage her own meds
- Cannot carry out simple steps
- Seems to have lost sense of time when it comes to meals and meds
- Rather eat snacks and junk food. We will prep meals, pre-prepped meals like Mom's meals but we have to repackage them as leftovers
- Has gradually lost weight over the past few months 

I could go on.  Anyway, I know we've been fooling ourselves for at least a couple of years.

Well, thanks for letting me vent.  

         

harshedbuzz

cyclist7531 wrote:

Hi and welcome. I am sorry you have a need to knock on our clubhouse door. 

Part of the issue I face as well is when I attempt to push the AL option my brother doesn't back me up. He'll start out supporting it but when my mom balks  he caves. His response is always "well she's happy here." Of course he isn't here to have to deal with anything.  I am the older one and do have a POA so I can probable force the issue which is where I'm at now.  

It's great that you have the legal paperwork in order. At the end of the day, when your mom was competent to do so, she chose you to act on her behalf when she no longer could. Unless you share that responsibility with your brother in the document, he doesn't get a vote. At the end of the day, you have to be the adult and make decisions that keep your mother safe even if they upset her for a time and even if your distant brother disagrees. Sometimes with naysayer, it's useful to defer to authority by telling him her doctor ordered this level or care.

From your description, it sounds as if she needs Memory Care rather than a hospitality model AL. It's best not to discuss or worse- attempt to obtain her blessing- around any mover. To borrow from the Nike- "just do it". Tour a few MCFs and make a choice for her. Then move her. If needed, you can create a therapeutic lie about there being a problem (water main break, bed bugs, remodeling) with her current apartment so she'll be staying at a senior hotel until it's fixed. 

I'm waiting to hear back from the doctor as I want a consult with a specialist to discuss my mom's condition.

I've created a list of what I've observed of  my mom's condition and where I have to basically step in and provide for her needs.

A few of the things I've observed (I also set up a nanny cam in the living room that has a view of the kitchen and stove).

- Carries on conversations with imaginary people.  I've viewed this on the nanny cam

She's likely hallucinating. Medication can help with this if it bothers her.
 
- Accuses us of lying and stealing
- Paranoid about  money -  hides it in odd places

This is a common behavior. Many PWD become suspicious and accusatory. It's generally best to deflect and redirect to a sweet treat or new topic. Sometimes apologizing for whatever crazy crime you've allegedly  committed helps the PWD return to a calmer state. Dad routinely accused me of selling his home for $350K less than it was worth. This was untrue and, of course, upsetting. I tried telling him I was sorry and would never do that again and he let it go- just like that. 

Once in MC, she shouldn't have cash or a need for cash. 

- Gets combative verbally when corrected or questioned about something

Stop doing it. There's no need to correct her in most cases unless she's upset about something and reassuring her helps. She may have anosognosia which is the inability to recognize that she's had a shift in terms of cognition and abilities. Her reality is that she's fine. Attempting to disavow of of that is cruel and needless. 


- Cannot manage her own meds
- Cannot carry out simple steps
- Seems to have lost sense of time when it comes to meals and meds
- Rather eat snacks and junk food. We will prep meals, pre-prepped meals like Mom's meals but we have to repackage them as leftovers
- Has gradually lost weight over the past few months 

These are all of the reasons why she is a more appropriate candidate for MC over AL. In AL she would be mostly left to her own devices; the assumption in AL is that she'll turn up for meals and activities at the appropriate time. In MC they round up the residents and escort them to the dining room and make sure they eat. Often AL will distribute medication, but MC will make sure it's actually taken. 

The preference for sweets and junk for is almost universal among PWD. To a point, getting calories in becomes the most important part of feeding. 

I could go on.  Anyway, I know we've been fooling ourselves for at least a couple of years.

My mother and I did too. 

This quick read helped me a lot.

12 pt Understanding the Dementia Experience (dementiacarestrategies.com)

Well, thanks for letting me vent.  

Good luck.

HB

         

dayn2nite2

Hate to say it, but even AL is beyond her at this time.  She would be appropriate for memory care or SNF.  So basically you are enabling this situation also by making her meals and pretending they're leftovers.

Who is the POA?

Stop doing what you're doing.  Tell your brother you will not be providing meals any longer and it's his responsibility now.  See what happens.

loveskitties

Hi cyclist7531,

HB has given you good run down on the issues you describe and basics of how to handle the situations.

My dad is 95 and like your mom has been several years on this journey.  All the things you mention he has done, and then some.  Just in the past few days we have had to add wandering to the list.  He put on hat, gloves and coat and left the house after supper.  He went to the end of the driveway and waited.  He said he didn't know why the people were not there to pick him up.  Fortunately he returned to the house without complaint, but now we know for sure he cannot be left unattended at all.

The reason for my story is that new symptoms come, old ones go, old ones reappear.  You cannot guess what the day will bring.  While there are lists of the 7 stages of Alz., seldom is it that static.  Behaviors can cross several stages at the same time.

I don't know what your relationship is like with your brother in areas other than your mom's care, but I would write him a letter listing all the things you have said here and let him know that going forward you will hope that he will be 100%  supportive of your decisions which are focused on keeping her safe and well cared for.  

Mom may be happy in her current location.  While we all would like our LO to agree to what we determine is best, they can no longer have a vote as to what is best for their wellbeing.  As others can tell you, when relocation to a facility is required the LO will usually adapt to it in time.  

I agree that Memory Care is the better choice given the current behaviors.  In fact some of the Assisted Living facilities (perhaps all) require a medical assessment of potential residents to insure they are capable of living on their own.  

Wishing you the best as you navigate this situation. You are doing what needs to be done.

RanchersWife

Many people who make it into their 90’s are fine until they aren’t. You’re either going to force the issue when you are ready or you’re going to deal with a crisis. You can maybe plan for the crisis a bit. Hindsight is 20/20. Many of us could have acted sooner. We all try to take their wishes into consideration. A popular saying on this board is “Care needs drive the decision making.” Just keep trying.

cyclist7531

Thank you. Appreciate your input.  I'm hopeful I'll hear from the doctor today so I can discuss this with them and get a formal evaluation done.  There are a few MC places I can check out.  The place she is now has varying levels of care including MC so if they have room that may be an option.  I've questioned AL as well.  I'm not sure she'd be able to find her way to and from her room without assistance.  Anyway, I've got to do something as the current situation is not good for her or us.

cyclist7531

Thanks.  I, solely, have POA so I can make these decisions without my brother if he isn't on board.

Marta

Cyclist:  a formal evaluation isn’t going to tell you anymore that you need to know. She is not safe living alone. The decision to place her is up to you, not the medical profession.

wyoming daughter

Hi Cyclist7531 - If you are waiting to hear from a doctor - problem solved.  He will be the one to let her know that the time has come because he will tell her it's unsafe for her to continue to live independently.  Then you could let her know about  the wonderful place you have found, and all the positives that come along with it, and when she balks, just fall back on the "dr's orders"...Hope this helps, hang in there

Emily 123

Hi Cyclist--there are some excellent threads on here regarding what to look for in a MC-just use the search function in the thread or archives, and many states have portals to licensing and inspection reports as well.