Alzheimers and Dementia Care - what did your family do?

[Anonymous]

Anonymous wrote:My FIL with dementia lives with us. Even though the initial move to our house was a reaction to an emergency it has been the best thing all around. Dad has a full-time caregiver with him, we basically reconstructed part of the house to give Dad a large suite that is as completely secure as any facility, and we get the opportunity to interact with him on a daily basis. I work full-time but when I get home then the care-giver goes off shift, and Dad and I are joined at the hip (I am better at being with Dad and dealing with his dementia than my husband and my husband picks up other household slack). I think that not only has Dad benefited tremendously from being in our home but our kids also have benefited from having him here. It is a lot of work but I wouldn't change any of our choices for all of the money in the world. It is the right choice for us.

God bless! At some point you may need to hire someone for several hours in the evening for Dad but you may not need that for many years.

[Anonymous]

Magnesium glycinate given in the evening works
a charm for sleep.

[Anonymous]

Anonymous wrote:Magnesium glycinate given in the evening works
a charm for sleep.

Which one to buy? My MIL is extremely agitated and hostile at night and doesn’t sleep much.

[Anonymous]

Anonymous wrote:

Anonymous wrote:My FIL with dementia lives with us. Even though the initial move to our house was a reaction to an emergency it has been the best thing all around. Dad has a full-time caregiver with him, we basically reconstructed part of the house to give Dad a large suite that is as completely secure as any facility, and we get the opportunity to interact with him on a daily basis. I work full-time but when I get home then the care-giver goes off shift, and Dad and I are joined at the hip (I am better at being with Dad and dealing with his dementia than my husband and my husband picks up other household slack). I think that not only has Dad benefited tremendously from being in our home but our kids also have benefited from having him here. It is a lot of work but I wouldn't change any of our choices for all of the money in the world. It is the right choice for us.

He doesn't have trouble sleeping at night? Most can't and from watching my MIL, I can't see how anyone on nightshift can have a daytime job.

He sleeps about 4-5 hours a night, which is about what I need and get anyway. Once the household goes to bed, he and I go downstairs and we'll do the activities that he really likes such as vacuuming or folding socks or sorting beanbags. He also gets really soothed by the sound of the dryer so I'll have laundry going. All of those activities help me get him down to sleep pretty easily. I think we are headed towards a night nurse pretty soon though just so someone is up with him 100% of the time. Right now we have a monitor in his room and the doors for his and our "wing" are all secured.

[Anonymous]

Anonymous wrote:

Anonymous wrote:Any tips on how your family managed to continue on at home? Dad is part of the equation and wants to continue at home with mom there. He needs some physical help but is still cognitively in relatively good shape, but unable to care for mom.

We've been at this around 15 years. When Mom could no longer cook dinners we hired first caregiver to work 11:00 am - 6:00 pm M-F. She drove Mom
around, to grocery store etc and prepared lunch and dinners M-F.

On Fridays she prepared 2 dinners for Sat and Sun. Mom and Dad were on their own on the weekends. Dad took them to lunch Sat and Sun.

We did this for a number of years.

Then we transitioned to caregivers 11:00 am - 6:00 pm 7 days a week. We did this for a number of years.

When Mom started eating cold raw oatmeal for breakfast we transitioned to caregivers 7:00 am - 7:00 pm 7 days a week.
We did this for a number of years.


How did you set up the payroll? We are moving from an agency to direct hire for my dad.
When Dad crashed to the bathroom floor and had a heart attack we started overnight shift so then we had 24 hour care (one person on for 2 adults).

Dad died after 6 months of this.

I put cameras in the house. Mom has 24 hour care. She is late stage alzheimers/dementia. She still walks about 1/4 mile a day and eats on
her own about 90% of time.

WHAT WE'VE LEARNED THAT HELPED.

1. We give Mom 400 mg of magnesium glycinate at around 7:00 pm. She goes to bed at 8:00. She sleeps through the night. We've
done this for years. Get the glycinate and it does not cause loose stools. It also helps with regularity. In winter we give earlier when it gets
dark early we give her 200 mg at 4:00 pm and 200 mg at 6:00 pm. This helps with sundowners for a total of 400 mg per day.

2. D manoose to help prevent UTI's. Mom gets around 1/4 tsp daily mixed in water. It does not prevent them but greatly reduces them.

3. The color red.....Alzheimers patients can test normal on eye exams but have extreme problems with depth perception. Mom eats from
red plate, silverware has red handles, we use red non skid rugs in bathrooms, changed out all toilet seats to red etc, etc, etc.

4. Walking outside and talking. A year ago Mom was probably walking 3/4 of a mile a day with caregivers. Now it is around 1/4 mile.
I think outside exercise is key. We push Mom with activities and conversation.

5. Free Careplan software in house. Caregivers log their notes in Careplan and head caregiver and I can read them remotely.

6. We hire direct. When we started all of this we started at $15.00 per hour (about 10 years ago.). Now caregivers make $18 or $20.
We almost never have turnover. We also provide caregivers meals in the house as Mom eats better when someone eats with her.
I have a time clock system on cell phone in the house. Caregivers punch and data goes to payroll service. My Dad was a hardcore
alcoholic. For many years the caregivers took care of both Mom and Dad (despite Dad saying he needed no care.) They worked hard.

7. I am out of state. I'm up there about 2 x per month. I'm working on clearing out the house at present and consolidating and
simplifying Mom's financials.

Good luck and God Bless!

****For the lady that has Mom in an attached unit to your home. If you can afford it when the time comes bring on someone to help
Mom with evening. You may not need this for a number of years.

[Anonymous]

Anonymous wrote:

Anonymous wrote:We couldn't afford help and couldn't find a program to assist so when I was scared to leave my MIL home alone in our home we had to put her in a facility. Medicaid will pay for a nursing home/memory care but will not pay assisted living. They look at the 5 hold back and other things.

Do you mean memory care at a nursing home is covered, but not memory care at an assisted living place?

Memory Care at a nursing home is the same as nursing care. Its just a locked ward. My MIL never needed locked as she would not run but they forced her into one anyway. Assisted living doesn't provide a lot of supports so if your loved one needs that much help they need nursing care. We looked at assisted living but she was not independent enough to do it (it was income based). So, we had to put her into a medicaid nursing home. I just couldn't do it anymore, we had no money to hire caregivers as she only had social security and we had a small house/no where to put the caregiver comfortably.

[Anonymous]

We use the KAL magnesium glycinate from Amazon.

Try it a 2-3 nights for yourself. Believe me, you
will sleep like a log.

[Anonymous]

I am the prior poster who has the round the clock caregivers for Mom. I think this was okay while Dad was alive to oversee things
but I'm not crazy about it now.

I think a locked facility is more social and also offers more
safety in terms of staff on hand.

[Anonymous]

Anonymous wrote:We use the KAL magnesium glycinate from Amazon.

Try it a 2-3 nights for yourself. Believe me, you
will sleep like a log.

Will try myself for sure - they have lots of options that look interesting for any age...thank you!

[Anonymous]

Anonymous wrote:I am a memory care worker and I can say with certainty that most families bring their loved ones to us way too late. Meaning after they wander outside and the police have to be called to find them. After they fall and break a hip. After they call you crying from the grocery store parking lot because they can’t remember how to get home. After the 5 fender benders.
Families 100% of the time mean well. They are trying to do what is best. They are trying to keep their loved one at home. They are absolutely doing what they think is right, even the family that rigged a seat belt on a recliner to keep their dad safe when they had to leave him to run errands. Or the family had a dog that barked when their mom tried to stand up that scared their mom into sitting back down to keep her from falling. I know they are all doing their best w a terrible terrible disease.
I just always like to jump in as a caregiver that we love what we do, there are many different settings we could pick to work in and we pick memory care/dementia units, and we have the staffing, the tools, the medication, the rehab team, etc so we can do the work and you can enjoy your visits. Have dad visit mom every day. Come every day or just on weekends. But we are here for you.
I agree that the very best scenario would be continuing care where as needs change, they can go to a different section with familiarity.

Bless you. Truly. One thing that’s important to remember is that medication can be used as a restraint and when that happens, it is *as bad* as that seat belt on the recliner you reference. I am a former memory care worker and I cringe at the references to “the right medication” and “medication mix that calms them down”. Those are lost like black box anti psychotics and they are terrible when used off label.

[Anonymous]

Anonymous wrote:

Anonymous wrote:Any tips on how your family managed to continue on at home? Dad is part of the equation and wants to continue at home with mom there. He needs some physical help but is still cognitively in relatively good shape, but unable to care for mom.

We've been at this around 15 years. When Mom could no longer cook dinners we hired first caregiver to work 11:00 am - 6:00 pm M-F. She drove Mom
around, to grocery store etc and prepared lunch and dinners M-F.

On Fridays she prepared 2 dinners for Sat and Sun. Mom and Dad were on their own on the weekends. Dad took them to lunch Sat and Sun.

We did this for a number of years.

Then we transitioned to caregivers 11:00 am - 6:00 pm 7 days a week. We did this for a number of years.

When Mom started eating cold raw oatmeal for breakfast we transitioned to caregivers 7:00 am - 7:00 pm 7 days a week.
We did this for a number of years.

When Dad crashed to the bathroom floor and had a heart attack we started overnight shift so then we had 24 hour care (one person on for 2 adults).

Dad died after 6 months of this.

I put cameras in the house. Mom has 24 hour care. She is late stage alzheimers/dementia. She still walks about 1/4 mile a day and eats on
her own about 90% of time.

WHAT WE'VE LEARNED THAT HELPED.

1. We give Mom 400 mg of magnesium glycinate at around 7:00 pm. She goes to bed at 8:00. She sleeps through the night. We've
done this for years. Get the glycinate and it does not cause loose stools. It also helps with regularity. In winter we give earlier when it gets
dark early we give her 200 mg at 4:00 pm and 200 mg at 6:00 pm. This helps with sundowners for a total of 400 mg per day.

2. D manoose to help prevent UTI's. Mom gets around 1/4 tsp daily mixed in water. It does not prevent them but greatly reduces them.

3. The color red.....Alzheimers patients can test normal on eye exams but have extreme problems with depth perception. Mom eats from
red plate, silverware has red handles, we use red non skid rugs in bathrooms, changed out all toilet seats to red etc, etc, etc.

4. Walking outside and talking. A year ago Mom was probably walking 3/4 of a mile a day with caregivers. Now it is around 1/4 mile.
I think outside exercise is key. We push Mom with activities and conversation.

5. Free Careplan software in house. Caregivers log their notes in Careplan and head caregiver and I can read them remotely.

6. We hire direct. When we started all of this we started at $15.00 per hour (about 10 years ago.). Now caregivers make $18 or $20.
We almost never have turnover. We also provide caregivers meals in the house as Mom eats better when someone eats with her.
I have a time clock system on cell phone in the house. Caregivers punch and data goes to payroll service. My Dad was a hardcore
alcoholic. For many years the caregivers took care of both Mom and Dad (despite Dad saying he needed no care.) They worked hard.

7. I am out of state. I'm up there about 2 x per month. I'm working on clearing out the house at present and consolidating and
simplifying Mom's financials.

Good luck and God Bless!

****For the lady that has Mom in an attached unit to your home. If you can afford it when the time comes bring on someone to help
Mom with evening. You may not need this for a number of years.

Thank you! This is very helpful!

[Anonymous]

I was scanning this exchange and will add that we helped both of our parents find an independent unit in a well regarded continuing care community in the
Boston area five years ago. My Mom had dementia and she entered the Memory Care unit , which was new a year ago March. It worked out well as my Dad is very independent still driving limited locally in daytime, hitting golf balls at the driving range and even golfing occasionally with one of my brothers at age 97.5. He is sharp as a tack. Anyway, even in independent living, it was a great help to have a woman coming in three tines a week to help Mom shower, do recommended physical exercise for about three hours a day. In Memorh Care, my Dad was able to visit daily, eat a meal with her etc. It was hard on him to see the decline, but having two in the same setting was such a relief.

However, from our experience, I would suggest with a couple in the same continuing care complex, but in different settings or a spouse living still at home and one in any sort of an assisted living, memory care or nursing unit, what is the policy on notification of a sudden death? By this I mean to clearly ask how a spouse would be notified AND then perhaps who should be notified first. In our case, my Mom had a heart attack in the early evening with a young caregiver getting ready for bed, and they actually went to call my Dad to inform him! However, fortunately he had a temporary hearing loss at the time so a staff person had to walk over to his unit an inform him. What is maddening is that they knew there were two sons/DILS within 10 minutes of the place who could have been called to buffer the news. It just makes sense to define how news of a sudden death would be handled within a Life are setting and/or if put in writing what family member should be contacted first.. Even with a chain which has a great reputation, you realize it is a franchise operation and there is no set centralized training of staff etc.

[Anonymous]

Here’s some all brick. This stuff built in the 1950s is much more solid construction, but it’s hardly trending. Interior looks like house was flipped. House likely solid.
https://www.weichert.com/98733508/

[Anonymous]

Ooops sorry wrong thread.

[Anonymous]

Would not recommend Memory Care in an Assisted Living Facility. Those facilities are unregulated and for profit. You will pay A LOT of money for your loved one to be taken care of by minimally trained staffed and certainly not experts in elderly or memory issues. Do your research and talk to families of relatives in Memory Care before you do anything. Assisted Living facilities are desperate for customers since COVID and you will get the hard sell to put your loved one into one of those places.