New to board--my mom has dementia

Peonie60

Hi,

My mom's memory has been declining for several years but especially in the last year. She and my dad (ages 85 and 86) moved to a graduated living facility 3 years ago. Now as mom goes through the stages of dementia I've read about, I'm mostly worried about my dad serving as a 24/7 caregiver. Mom is mostly happy and remembers family that she sees often, so we are lucky for that. But she is starting to wander around her apartment, can't remember how to do very basic tasks and doesn't want to bathe. She's also rescuing her dirty clothes from the laundry and re-wearing them. These are all sort of cute to those of us who don't live with her, but poor dad is having trouble dealing with it all. He was raised old-school and is a bit stubborn, so he hasn't opened to the idea of hiring help, like bringing in someone to bathe her or to sit with her so he can have a break. He feels that this is part of "for better or worse." I visit with mom one day a week so he can go have coffee with his buddies and I know he really appreciates that time. 

I guess my quest is for a book or printed advice that will help my dad navigate the next year, which will probably be full of changes. I'm currently skimming "Alzheimers and Dementia for Dummies" and that seems to be at the level he needs to understand what's going on with mom. They're not religious so nothing along that line  please. But looking for something to explain and offer support for the inevitable. Thank you in advance.

Rescue mom

Two things I thought are very good: 

1. online, free, Google for it—“Understanding the Dementia Experience” by Jennifer Ghent-Fuller. About 25 pages, printed. Very readable.

2. A short book, I got from Amazon: “Caregiver Overwhelmed: How to Cope with Alzheimer’s and other dementias…” The title sounds melodramatic, but it’s a very practical, easy to read, book, maybe 125 pages (I got it on Kindle, hard to tell). It briefly describes different dementias, the stages of dementia, what to expect, and the main part—very good tips for coping with the behaviors. 

As you sort of mentioned, a lot of these books tend to be about attitudes and the journey and spiritual things, which is great for some, but I wanted more hands-on practical advice, and this book is good for that.

Peonie60

Thank you! I will track these down and check them out.

LaurenB

I recommend to people who aren't familiar with dementia and the progression: "The 36 hour day." as a good first start.  Skip ahead to the parts that you need to know and be ready for the future declines.  As we know, dementia is progressive over time.  Some people travel at faster rates than others.

Emily 123

Hi Susan,

A good start would be to  lay some of the groundwork to get your dad assistance.  Caregiving is mentally, physically, and emotionally draining.  From what you're describing, he may not have the energy or time to look at what options are out there or read up on dementia.  Talk to the community managers--What can the community offer to support your mom and dad?  What do other people there use as ancillary help?  Since your parents are in graduated care, do they need to level up now?  Are there activities for residents she could join in?   Do they offer anything dementia specific or run any dementia support groups?  Is there a local adult daycare she could go to?

See if he'd like to take a look at the forums here, as well as look at the groups available (links in the header). They provide great support and really helpful suggestions, and very much encourage getting help in to give the caregiver some help. 

If your parents haven't already set things up, now is the time to work with your dad to have POA's in place and clarify healthcare wishes for both parents. Financials/contacts should be set up so that the POA can access them when necessary. 

The Teepa Snow videos on YouTube are helpful: https://www.youtube.com/embed/videoseries?list=PL2E2lPBsUeBjA1Utglo8q6yANAijEf8cX

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

Kathy49

New to this world.  My sister has been diagnosed with Alzheimer's , early stage.  She lives alone in a senior housing complex.  I live in SC and my other sister is 2 hours away.  So we are long distance care givers.  We have an Elder Care service helping with things like Meals on Wheels, Light house-keeping, finances, etc.  but it is stressful dealing with this from a distance.  Sometimes she forgets to answer her phone and that is worrisome.  We were finally successful in getting her to stop driving and she is within walking distance of her doctor, grocery store and bank.  Aside from the dementia, she is in good health and enjoys walking.  I would appreciate any comments or suggestions on how other long distance caretakers are dealing with similar situation such as ours.

jfkoc

Your father's view is not unusual at all and it has at it's core not only his marriage vows. It also carries a fear that extra help makes the road closer to the end.

If you could approach the extra help as freeing your father to spend more relaxed time with his beloved you may get better results. Also the addition of another person arriving with a bright hello and some chatter from the outside world is helpful to all. Additionally just chatting with your mother about recipies or doing some art work on the kitchen table adds an element.

My favotite book is I'm Still Here by Zeisel. It is all about valadation and acceptence.

Rescue mom

Kathy—welcome but sorry you have to be here. Just a bit of advice, you will get more answers and help with your  question  if you start a new thread that’s just about your issue. Now you are “hidden” at the bottom of an unrelated thread/question, so others may not see yours.

It’s very easy, at the top of each forum you see a green box that says “add topic.” Just click on that box, and follow the prompts to ask your question.

emoss72

This is a very good book (The 36 Hour Day) I am currently reading this.  It has a lot of information

Edna’s Daughter

Hi … new to the board. Mom was diagnosed this July. My siblings and I decided that it would be better for my mom to move in with me  from NYC to MD to better care for her. I am trying to take this all in. I hope we made the right decision.