Alzheimer's Questions - Please Help

[underwaterrhymes]

My yiayia was just diagnosed with moderate to severe Alzheimer's.

She's been deteriorating mentally for some time and had an MRI on Sunday. I guess my Papou logged into the patient portal and was optimistic this morning as there were no signs of deterioration in her brain.

But, despite this, at their appointment this afternoon the neurologist diagnosed her anyway by talking to her and asking a series of questions. I guess you can make a neurological diagnosis as opposed to a physical one? (I wasn't at the appointment - my 90-year old grandfather and my 86-year old grandmother were the only ones there. Obviously he's very upset and some of the details may be incomplete or wrong.)

Anyway, the doctor was a complete asshole and didn't offer any tips in terms of finding support for my grandmother. He just said he wanted to prescribe some medication that starts with the letter N (my grandfather wasn't clear on this, but thanks to google I think it's perhaps Namenda?) and that the side effects were nausea and diarrhea.  He also said that my yiayia should not be left alone at all anymore.

My grandfather is extremely active  and is not ready for assisted living and won't put her somewhere without him, but he is looking into having someone come to the house.

Can anyone please recommend some resources for them for home care aid or any other services you think might be helpful?

And is this still hereditary - even without the plaque?

My mom is flying up there this weekend and will be spending some time with them over the next two weeks.

I just feel lost. I want to help, but they're half a continent away. My grandparents are so fucking amazing. They've been married for 70+ years and are my inspiration for what I want my marriage to look like when I'm old. I love them so much.

[hopecounts]

First she needs to be on meds ASAP if she isn't too far progressed for them.
Second locally there is an Alzheimer's adult care center where care givers can bring the affected loved one during the day whether to get a break or to work or just to get additional help. See if there are any similar centers near them.
Early on set is hereditary which this isn't traditional Alzheimer's may be hereditary but is often not.
Absolutely start calling around about home health but they are usually quite expensive.
How is her safety?
Any elopement/turning on the stove or burner and leaving it/etc?
For my gran the meds kept her stable until close to the end when other health issues bright on a fast decline so she was able to be at home until she entered hospice (she was transferred to the hospital and rather then putting her through another transfer we kept he in the hospital hospice wing).

[karmasabiotch]

Look for her local Area Agency on Aging for information and support. Some insurances will pay for an in home care giver for part of the day. Nights are harder. Meds work the sooner the better.


It can be inherited but it's not a given.

Hugs...

[BaliHai]

www.alz.org has a TON of resources, including a 24/7 support hotline if your grandfather needs/wants to call them (we used it a lot when my Grandmom lived with us). I'm so sorry, UWR.

[sarahbear]

His local Alzheimers Association would be a good place to start.

[Jalapeñomel]

I have no advice but huge hugs to her, and to you and your family.

[underwaterrhymes]

Thanks for the tips, guys.

hopecounts - She doesn't have a lot of autonomy at all. She doesn't do anything around the house at all anymore. My papou does everything for her, including cook, so I don't think it's likely she'd turn on the stove. However, he likes to go to the gym and for walks and there's just no way he can be with her 24-7. So I think safety-wise she's pretty good most of the time, and a lot of the things we've been seeing have been more personal care / hygiene issues, and ability to remember things that should be easy to remember. (She'll do things like put her underwear on her head.)

This sucks.

[lpcats]

Later symptoms of Alzheimer's include personality changes in addition to memory issues, so just because she hasn't done something in the past, like try to cook, doesn't mean she won't decide to do it. So just be aware of that for the future. Hugs to all of you.

[underwaterrhymes]

Thanks for the heads up lpcats. That's good to know.

[ZoeHart]

Do they have a neighbor or friend that stays with her when your grandpa leaves the house? My grandma had severe Alzheimer's and it got to the point where she couldn't be alone anymore - both for her own safety and because she would panic when she realized he was gone.
I'm so sorry, it's so hard to watch someone you love go through this. Big hugs.

ETA reading fail, I see you did touch on this in your original post.

[dirtyred]

My mother has Alzheimer's and my dad tried having help come to the house, but all it did was distress my mother because she would forget where she placed things, then thought that the aides and house cleaners were stealing from her.  

And as a pp said, just because she hasn't cooked in years doesn't mean she won't try. They often regress and think they are younger than their actual age.

[Bernadine]

I don't have much help to give, but if your grandfather wants to be out and about during the day, some type of adult day care could be just what they need. My great grandmother went to one, and she thought she was going to work. It was great to give my grandmother a break.

I'm so sorry though.

[hopecounts]

My grandad had to give up a lot of his activities to be with my Gran.
my Mom would go up there as much as she could but she was working and lives 45 minutes or so away, they did have a housekeeper who came in and she would come in on Sunday morning and sit with gran while doing the house stuff (one floor and Gran never tried to elope or doing anything dangerous, she basically would just sit there and have random conversations) so Grandad could go to Sunday School and Church.
It was extremely hard on him but he didn't like the other options that were available.

[killercupcake]

No advice. Just hugs. I'm sorry.

[underwaterrhymes]

Thanks for the support.

My Papou spends most of the day with her. He just goes to the grocery store for an hour here or the gym an hour there. He needs those breaks for sure. He really dotes on her, though.

She had always done the cooking and cleaning, but she got shingles a numbers of years ago on her face and it caused nerve damage and totally changed her world. She lost any sort of independence she had. (Which, admittedly, was limited to begin with since she never learned to drive and has never worked.)

He has been so amazing. I know this is terribly hard on him.

[cville]

In addition to personality changes that might cause her to try to do things she hasn't before (e.g. cook), she might become very unlike her true self. She sounds like a lovely woman, so should some of the irritability and violence that is frequently is associated with dementia assert itself it may be a shock to your family.

Which leads me to caregiver fatigue. While your grandfather is handling things now just fine, it may be advisable to work in some care relief sooner rather than later (like a part time day nurse) so everyone can get acclimated.

[lilac05]

Hugs. Alzheimer's is such a cruel disease.

You've been given lots of great advice here. If they live in a more rural area, some of the adult day care type places may not be available for them. Like dirtyred, my Grandma just became more agitated by "strangers" in her home "stealing" things. (And honestly, some of the caregivers were a little shady, even though they came from a great company.) We ended up finding a nursing home for her where she could live safely & have good care. It allowed my grandpa to transition back to being her husband and biggest support rather than her caregiver. It gave him a little independence, but, barring REALLY nasty weather or doctor's appointments, he was at the nursing home with her for many hours, every single day. His health and well-being improved, the quality of HER care actually improved, and it was just a better fit for everyone. Many people judge putting a loved one in a nursing home, but many times, it really is the best place for someone who has a high level of needs.

[cville]

And I'm so sorry. I've seen firsthand how terrible Alzheimer's is, and I know you are reeling.

[underwaterrhymes]

Jul 14, 2015 16:52:18 GMT -5 cville said:

And I'm so sorry. I've seen firsthand how terrible Alzheimer's is, and I know you are reeling.

My step grandmother also died of Alzheimer's, so it's not an entirely new process, but she had the evidence on her MRI and was diagnosed early. Also, she was moved to a residential care facility as she lived alone. This is the first time we are dealing with this from the perspective of taking the caregiver's thoughts and experiences into consideration.

And although I loved my step grandmother, my yiayia is special to me. She watched me for the first four or five years of my life. We used to make clay otters together and have afternoon tea parties.

[underwaterrhymes]

And I'm so sorry that so many of you know what this is like.

[cville]

Hugs to you, UWR.

[underwaterrhymes]

As far as a full-time facility is concerned, although it may well be the best place for her, my Papou is not in any way ready for that. He feels very strongly about staying with her and there is no way anyone will convince him otherwise at this stage of the game. He's extremely sharp and independent himself (still walks 3 miles a day and lifts weights) and their entire world has been built upon each other.

[Deleted]

Dad had Alzheimer's. I read some of the previous responses, but not all. I want to suggest a wonderful book called The 36 Hour Day. Also ditto to contact the Alzheimer's Association to find out about a support group.

Hugs because Alzheimer's really really sucks.

[underwaterrhymes]

And limited time only PIP. These are my grandparents this last year. Don't they look great for 90 and 86?

[fuckyourcouch]

Hugs uwr. I'm sorry.

We just went through this with my grandmother for a few years. You've gotten good advice.
We have a senior day center here, that may be something he can look into to drop her off for activities while he exercises or whatever. They have programs all day.

[isabel]

They both look good, but I'm super impressed with your grandpa! I think I would put him in his 70s.

I'm very sorry about your grandma's diagnosis.

[VeryViolet]

I am so sorry your grandparents and family has to deal with this.

I didn't have much more to add but just wanted to mention to make sure that you (not you specifically but you family members) do a lot of research on any home health services you use. While there are some that are great there are some that are not. Even in the agencies that are great the caregivers can vary.

Again I am so sorry I am sending lots of hugs and good thoughts for your yiayia your way.

[Rainyday]

Jul 14, 2015 15:51:25 GMT -5 underwaterrhymes said:

Thanks for the heads up lpcats. That's good to know.

This is a post and run but my grandparents were in the same situation for years. They had "Personl Care" come to their home for years until they finally both moved into a senior living community. I believe Personal Care is nationwide. I can empathize as far as family goes.
I'm so sorry it's a painful situation for all involved .

[underwaterrhymes]

Thank you so much, guys. For the hugs and the tips.

[Kit]

I have no advice underwaterrhymes , just hugs.