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New to forum/Mom's Dementia and not sure how to help her
Posted: Saturday, January 5, 2019 5:25 PM
Joined: 1/5/2019
Posts: 46


My mom (LO) was diagnosed with Vascular Dementia about a year ago.  Much has happened (good and dramatic/traumatic), which brings me to being her POA (health and financial) without the support of my siblings in her care.  LO refuses to be in contact with them, which I support.

I am grateful for this opportunity to help my mom, yet I don't even know where to begin.  It is a huge responsibility.

LO is currently in an AFH (about 2 months in) - she is having a hard time settling into the caregiver routine and is not eating/drinking as much as I'd like (would be good for her.)

For her sake, how do I help her?  She basically sits on her couch all day except for the meals I told her she needs to eat.
For me, how do I get LO to talk to the caregivers vs call me in a crisis many times a day?

p.s. I'm also looking for resources to help me help her -- any information is appreciated.  I went to a local support group, but most folks were just angry and emotional (which I absolutely understand and can empathize) -- yet I need to find a way to more actively help my LO.

Many thanks,


Posted: Saturday, January 5, 2019 6:00 PM
Joined: 4/1/2014
Posts: 4749

I did a lot of reading and research to improve the quality of my mother's life. The book, Creating Moments of Joy, was a great resource. I also hired a person to be my mother's companion. Maybe you can hire someone to "befriend" your mother who will take her to activities at the facility. Many people with dementia cannot self motivate and need help to go to activities. In time your mother may begin to feel as if she belongs and you will no longer need a paid caregiver.
Mimi S.
Posted: Saturday, January 5, 2019 7:09 PM
Joined: 11/29/2011
Posts: 7036

Welcome to our world. I'm glad you found our site.

Please explain more about the facility your mom is in. Is staff trained to work with dementia patients?Creating Moments of Joy is a wonderful book.

More difficult to read but extremely worthwhile is any book by Naomi Feil with the word Validation in the title.

Is her weight being monitored? How is it going? That plus periodic blood tests are good indicators if her diet is adequate.

Re multiple phone calls. Don't answer. 

Are activities provided daily that offer physical and cognitive stimulation.  Is she being brought to these activities. This seems to be a problem in many facilities; excellent activities are offered but little is done to get the couch potatoes to participate.

I do hope that whatever has led to the family estrangement can be solved.

Posted: Saturday, January 5, 2019 10:42 PM
Joined: 1/2/2019
Posts: 1

I have many of similar questions.  My mom isn't to the point where she needs 24 hour care, but I believe we're close to the time where she'll need more help.  I live with her now, however I think she could benefit from living by herself or in a community that provides some home health care.  Does anyone have referrals to communities that will accept Medicare.
Posted: Sunday, January 6, 2019 6:10 AM
Joined: 3/14/2018
Posts: 161


To my knowledge, Medicare doesn’t pay for assisted living communities.  

Ask more questions and red more posts so you can plan for your futures. 

Posted: Sunday, January 6, 2019 12:20 PM
Joined: 1/5/2019
Posts: 46

Thanks so much for the responses.  I've found the book Creating Moments of Joy at the library to read.

Mom is currently in an Adult Family Home (AFH) where yes they are trained in Dementia care, so it's not a big facility with coordinated activities.  Mom was a hermit for the majority of her life, so large crowds don't work for her and add to the confusion and stress of her VD.  She is 76.

I am at the part/point where she does need reminding about basic functions like teeth brushing, changing her socks, etc.  She has lost a lot of weight this past year -- currently under 100lbs -- so it is hard for her to be very mobile yet alone taking her outside for a doctor or social appointment.  They were not monitoring her weight and I've asked them to start to do that.  

I'm working with the caregivers to work on meals that mom will eat -- she is having a hard time accepting the caregivers. I've asked them to start giving me a list of her meals, what she eats, and when.  But I don't think I should have to be playing that role -- care is expensive and I expect them to be doing those kinds of things. (Unless I'm being too naive?)

Mom sold her house, which is what is paying for her AFH expenses -- it is private pay for two years before Medicare will kick in.  I found a place called 'A Place for Mom' that I started to use to help me navigate living and financial arrangements.  I had mixed results, but it's a free service to you (the facility pays the finders fee).  I ended up using a similar service, but run by a two team business.  I'm overall happy with the AFH she is in -- it will just take time to adjust.

For the phone calls, yes I do "screen" them so as I'm not reacting to her panic.  I am working with the AFH to be her direct conduit for her needs -- some days are better than others.

So I am focusing on making her quality of life safe and happy for her.




Posted: Sunday, January 6, 2019 4:01 PM
Joined: 3/8/2018
Posts: 713

Welcome, MAMJ

When my mom went into NHMC three months ago, the dietician called me and we talked about what foods she ate at home, what she liked, what she *might* try. It sounds similar to what the staff is trying with your mom. Do they have a registered dietitian on staff? (I’m also curious what the other staff types are, andmhow many per resident)

Two months is still early-ish for adjusting. And it was hard for me to step back and let the staff take care of things, instead of me being involved as I was when mom was home with me.

The transition is tough for everyone 

Posted: Sunday, January 6, 2019 7:17 PM
Joined: 1/5/2019
Posts: 46

Thanks SelEtPoivre,

The care ratio is 1 caregiver to 3 residents.  One is bedridden; the other is wheelchair mobile.  Mom is able to do the very basics for herself.  They have a registered dietician for their homes -- she visits weekly.  

Yes they are trying her diet out -- she also has restrictions and now her jaw is acting up, so basically soft foods so then she'll get cranky, and I dare say, not nice to the caregivers and will refuse to eat.  At least she listens to me that she has to eat three times a day.

Today I visited and mom was upset about her recollection of an event and the caregiver said her side of the story.  During one of Mom's meals, Mom wanted to talk about it and I asked the caregiver to sit down with us -- the caregiver basically got into a "he said/she said" conversation -- not good for someone with VD.

I would rest more comfortably if I felt the caregivers were "on it" more.  The overall management is good so I have faith it will work out.

So suggestions on how to interact with the facility people?  Meaning today the power went out and when I got there mom had not been fed because they could not make her a warm meal (because of her special diet.)


Posted: Sunday, January 6, 2019 7:32 PM
Joined: 3/8/2018
Posts: 713

I was on Team GiveItSomeMoreTime...until I got to your comment about the power being out. I’ve done healthcare emergency preparedness, so Id *really* be interested to read their safety plan. What else “goes out” with no power? Lights? heat? Call system? 

Ok, I need to take a deep breath here, but this stuff is *so* ingrained in my background (and so important when patients can’t “self rescue”). Add it to the list of things to ask adminstration for.

Posted: Monday, January 7, 2019 6:12 AM
Joined: 1/5/2019
Posts: 46

Thanks -- you read my mind (up at wee hours in the morning thinking of the same thing.)  Some things I can give more time; this was unsafe for mom and the other residents.

Yes, that's on my list is to find out their emergency preparedness for the home and their caregiver training in such a situation.  And yes all those things were out (lights, heat, phones) and the caregiver tried to get help earlier during the day (via her cell phone), but didn't escalate after 5+ hours of the power being out.  I stepped in to call the administrators -- I know the caregiver meant well, but was out of her element (so not fair to anyone involved.)  What would she have done when her cell phone battery died?

They finally brought in hot meals, got more lighting, and were bringing in a generator.  Again, I don't think the caregiver did anything wrong intentionally, I think she is/was ill equipped to deal with the situation.

Question: How do I firmly/politely ask administration for their Safety / Preparedness plan for the home and the training for their caregivers (and backup plan B, C?). I live in a windy area so I'm sure this has happened before and will happen again.

Sorry if I seem persistent with her care -- but Mom has been in a prior facility, and also with my two siblings, where they did not give her the best care and I've had to *insert* myself to be her advocate.  (this is the prior trauma/drama I referred to at the beginning of my post.)

Many thanks for your guidance and support -- I finally feel like I've found a place where I have people with much more experience than I to guide me in the right direction for Mom.



caregiving daughter
Posted: Monday, January 7, 2019 7:09 AM
Joined: 11/27/2012
Posts: 2031

I would encourage you to ensure the home is a going concern. Try to do due diligence to ensure the owner won't change their mind and close the home. I am not trying to alarm you but you should have comfort that this is a long-term plan. Yes power will go out at times. There may be no way in the short term to prepare a hot meal. If your mom has dietary restrictions, ensure the home has something cold that would work in her diet. Any sharing of concerns should not be done in front of residents. My guess is that most residents in a home like you describe or mc would go to family members to express concerns. I don't know that you can teach or advise your mom to go directly to the home. She needs assistance and reassurance at all times. Caregivers should be trained on how to do this. I think you said something about caregiver couldn't call you because their battery was out. The home should ensure caregivers are able to call 100% of the time. They should be doing regular weighings and should have this information at a regular meeting (perhaps every three months). Every day they should be documenting the percentage of food your mom is eating. Maybe things are more relaxed in a small home but you absolutely need to be able to check in on how much your mom is eating.
Posted: Monday, January 7, 2019 8:59 AM
Joined: 5/22/2018
Posts: 143

Could you speak to the dietician about having your mom get smaller, frequent meals? If three large hot meals are too much for her, maybe she needs smaller snacks brought in that are nutritious. Brainstorm with the dietician. 
I'm troubled by the facility having to "bring in" a generator. They should have had that as a back up plan already. Don't feel like you are bothering the administrator to speak with them to ask. That's your right as an advocate.

Posted: Monday, January 7, 2019 9:21 PM
Joined: 1/5/2019
Posts: 46

Thanks Caregiving daughter -- yes, all great questions and thoughts.  I have an in person meeting next week with the administrators and caregivers to learn more about their emergency plans, etc.  This is a group of homes that have been in business for many years which I found through a care referral service -- they ultimately have my mom's best interests at heart -- I think they just run like a small business vs a big business.  

Suziesb - I've tried to get Mom to eat many meals a day but she refuses -- at least now she is on a three meal a day schedule (albeit not evened out.). I've been working with the nutritionist and hopefully we can get her on some snacks as well.  I want them to weigh her more frequently for now to make sure she's not losing weight.  And thanks for reassuring me I'm doing the right thing for Mom by being her advocate.

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