Alzheimers is the Devil.

My parents are 85.  Married at 18 and had one kid a year for 7 years.  You guys that are ~30 imagine having 7 little kids running around, none taller than 3ft.

Mom survived all this, went through colon cancer and breast cancer, but still drives and is moderately healthy, we all figured Mom would cash in first.  Dad's never been sick a day in his life, not even a cold; thinks it's psychosomatic. 

A few years ago he got a prostate infection and this aggravated the delusions and seeing things that aren't there.  Lately he's been wanting to "go see his mother" who died 40 years ago.  Yesterday he packed a suitcase.  My sister lives some distance away but the five of us within a 20 mile radius are stepping it up.  I'm looking for adult day care to bring Dad for 5-8 hours twice a week to give my mother a break. 

Any thoughts, suggestions or experiences to make life easier are appreciated.

Dan

I don't have any constructive advice to offer, but you have my deepest sympathy.  It sucks.  My father-in-law went through dimentia, but we were mostly estranged from him by his second wife by then, so we only had to see it at a distance, and couldn't help much.  My brother-in-law's father is in pretty deep as well, and I see what the extra load is doing to him.

My dad had walking issues and due to guilt he lived with my sister.   Total disaster for him and her family.   

He moved to an assisted living home and thrived.  At 81 years of age he was teaching seniors iPad classes.  

He had his mind to the end but my Grandmother suffered and would ask me questions from her childhood.   Sometimes I lied to keep the story flowing and not making her mad.  

She also thought I was her brother.   

My dad is going through the same thing with his mom, maybe a bit advanced.

Problem is that as soon as short term memory starts to go (my grandma's issue) nothing can be assumed. For example, one plan my dad had for grammie was to write her weekly calendar for her. But she couldn't remember what day it was. Then he asked her to check off each day as it passes. But she couldn't remember if she had checked that day off earlier in the day or not. She can't read books because she constantly has the feeling of being  tired when reading, when you find yourself on a page and can't remember what happened the last two pages. She also starts books, puts in a bookmark to pause, and then can't remember which book she was reading. 

When my grandfather was still alive and managing it, none of these things are visible problems, but you also never think about them until you are in it.

Some things we all were able to find quite funny though, as my uber health nut for 80+ years grandma was eating a whole box of Oreos in a single day. The theory is she would eat one, then go about her day, and forget that she already had one. So five minutes later would grab another. However, she would be absolutely silent about it, and when pressed would say nothing. Exept a barely-visible twinkle in her eye...

Its to the point now where she sometimes doesn't recognize dad on the phone. 2 years ago when we visited she was asking who my two very young children belonged to every morning (very slyly, however, she would always ask someone who could definitely not be the parents). She knew me just fine though. She is also very smart and an excellent conversationalist, so you hardly notice when speaking with her. She stays in familiar territory (to her, the past), and she is able to ask good questions and let others speak.

Loosing a mind is a vicious toture to all involved. I wish you some humor and some peace with it. If possible, ask for stories about the past, when you don't remember to have a filter you tend to tell really good stories.

At some point, you will need to put him in a home.  Don't make that date so far in the future that it wears your mother out.  Neither one will want to change things...

Berkeley alzheimers.

A distant relative has the same problem. Unfortunately it struck just before her husband died and she has to relive learning that again and again. Often she has some vague feeling that he's not around but doesn't understand what happened to him until someone explains it...until next time. She's in her early 70s and it struck pretty suddenly, a few years ago nothing was wrong, she was working a job that she had to quit due to the early symptoms.

In reply to 914Driver :

I am living this same situation only from 1200 miles away. This is forcing her to plan for three scenarios"

One, they stay in their independent living retirement community and manage as best they can.

Two, Dad goes into assisted living and Mom finds a new place

Three, Mom's health fails  and a place has to be identified and in writing as a solution for Dad.

Dad never took so much as a pill until his memory started to go in his late 80's and sometimes I am not sure the pills are not a part of the problem. Funny you mention the prostate drug since that is almost exactly the same timing in this case.

Robbie said:

 

 

Some things we all were able to find quite funny though, as my uber health nut for 80+ years grandma was eating a whole box of Oreos in a single day. The theory is she would eat one, then go about her day, and forget that she already had one. So five minutes later would grab another. However, she would be absolutely silent about it, and when pressed would say nothing. Exept a barely-visible twinkle in her eye...

Loosing a mind is a vicious toture to all involved. I wish you some humor and some peace with it. If possible, ask for stories about the past, when you don't remember to have a filter you tend to tell really good stories.

My Mom loved ice cream.  One day, at about 93, her doctor suggested she might lose a bit of weight, I presume based on one of those unreasonable BMI charts, because she was never overweight a day in her life.  The only good thing about dementia is that she forgot those instructions, and we fed her ice cream every day we could, until she died. It was a pleasure to see her enjoy something...

On the humorous side of things, my aunt and uncle both came down with dementia to the point where they ended up in separate, but side to side rooms in a care facility. The discovered each other and started "Dating" thinking it was an affair.

My Aunt also never liked my mother, but became very fond of her once she moved into the care facility.

I have a brother and a good friend who are schizophrenic and coping, but they both assure me that the fabric of any given reality is thin.

Assisted living. Sooner rather than later. 100% recommend.

We're going through this issue with my mother in law. She started showing signs of memory issues about six years ago when my father in law passed, and within a year we were looking at facilities for her. She was in a semi-independent place for a while, but she's now in a fully managed facility (the same place Tim's dad was, actually) and doing great, all things considered.

Basically, the downside of making this decision too late is WAAAAAAY worse than the downside of making it too early. Looking back now, we realize how many signs we saw even years before she was actually diagnosed that are absolutely obvious in hindsight.

My recommendation would be to get a good elder care lawyer to draw up an estate plan and find a good care facility with staged memory care. 

Went through this with my step father a few years ago. Yes, adult day care will help your mom get a needed break. Even if it's just to sit down and read a book for a while, let it be "her time".  If the rest of the family can take turns to host dinner a couple evenings a week (or bring it to them) that's a big help too. Turns to take Dad 'out" for a Saturday can also provide a break. Support groups are a good resource too.  Begin the search for assisted living, you'll need before you know it. 

My mother felt guilty about the releif she felt when that day came. It's ok to feel the relief as you have done the best you can for them.

Alzheimers...... the one disease I truly fear the worst. 

Agree with the above, go with assisted living sooner than later. If he's packing suitcases you're already there in my experience. 

My grandfather packed a suitcase and took a drive in winter. Ended up being found dead from hypothermia,  250 miles from home, his car stuck on a rural two-track. It was a horrible call to get on Christmas Eve. Wish we had acted sooner. 

Streetwiseguy said:

Robbie said:

 

 

Some things we all were able to find quite funny though, as my uber health nut for 80+ years grandma was eating a whole box of Oreos in a single day. The theory is she would eat one, then go about her day, and forget that she already had one. So five minutes later would grab another. However, she would be absolutely silent about it, and when pressed would say nothing. Exept a barely-visible twinkle in her eye...

Loosing a mind is a vicious toture to all involved. I wish you some humor and some peace with it. If possible, ask for stories about the past, when you don't remember to have a filter you tend to tell really good stories.

My Mom loved ice cream.  One day, at about 93, her doctor suggested she might lose a bit of weight, I presume based on one of those unreasonable BMI charts, because she was never overweight a day in her life.  The only good thing about dementia is that she forgot those instructions, and we fed her ice cream every day we could, until she died. It was a pleasure to see her enjoy something...

My wife is an RD. She told me that the only way they see [very] elderly people is if they are there on their own, or else it is for a medical reason (surgical recovery, gall bladder issues, diabetes, etc). For the most part, once you get to that advanced age, overweight is a good thing. When they do get consults from clueless doctors, they basically give the "eat your fruits and veggies but more importantly you need to keep eating" speech, followed by a reminder that you can get your fruit from pies. 

What the hell are you going to tell someone who's that old? Don't do one of the only things that gives you pleasure? berkeley no. Go grab that bratwurst. Have a beer with it, what the hell do I care?

GameboyRMH said:

A distant relative has the same problem. Unfortunately it struck just before her husband died and she has to relive learning that again and again. Often she has some vague feeling that he's not around but doesn't understand what happened to him until someone explains it...until next time.

That's the most heartbreaking thing I've read in a while.

My parents had to deal with this with my paternal grandmother. They thought she was "getting a little forgetful", but they saw her several times a week. I came home for a visit and noticed that she had lost quite a bit of weight. They started marking her food  because she could tell them what she ate, but it turned out she had no concept of what day she had last eaten. Eventually they had to put her in a home. She went downhill pretty quickly, forgetting each of us , one at a time, until she only recognized my father. Gramma was gone long before her body gave up. I don't envy you, it's an ugly way to lose someone you love.

Bob the REAL oil guy. said:

Alzheimers...... the one disease I truly fear the worst. 

Also, Alzheimers...so cruel that it won't actually kill you, it just makes living impossible. 

I know you'll think this is morbid, but also consider hospice for your dad.  Not that he is in imminent likelihood off death, but hospice is availabel for those with alzheimers/dementia.  SWMBO is director of clinical services for a hospice company.  In fact, she went thru what you're dealing with her father.  He went on hospice 3 years before he died.  With hospice care he was able to live at home until his death.  Was a great assist to her mother in helping him maintain the best quality of life as the alzheimers  took its toll.

I know this comes out of left field to suggest hospice but it could be a viable option.  Most people think it's something to consider in the last week's or months of life but it's not the whole story.  Simply put hospice philosophy is to try to give people end of life quality whether death is imminent or not.

If youre interested I'm sure SWMBO WOULD BE HAPPY TO discuss this option candidly with you and she wouldn't have any vested economic interest so she could be totally candid.  At the very least she could give you the right questions to ask if you want to explore this option. Let me know if you'd like to discuss both her personal and professional experience.  BTW hospice is 100% covered by medicare...including drugs multiple visits by nurses each week, volunteer assistance, etc.  It also offers a lot of services free for your caregiver mother.

good luck

Agree with the hospice suggestion. Should be used far earlier than it is. 

The more active you keep the mind, the better it seems to hold together.   Adult daycare is a very light solution, you need to additionally look into some in-home caregiver options.  Hospice, if available is a definite option.  What was said about assisted living, consider that earlier can be much better because they may still have enough faculties to adjust to a new norm. Economics of it are a consideration though. Get educated on local options, now. Plan NOW and evaluate implementation. As others said, too early isnt nearly as bad as too late. 

Had two grandparents with Alzheimers, one on each side. There are some VERY bad wards. My grandfather on one side was in one. We waited way too long and he had no idea what was going on and was very confused and angry, but no other option was tenable. My grandmother on the other side was in a better facility (states apart geographically) and managed pretty well. Seemed generally happy until she passed in her sleep long after she ceased to recognize anyone from the family. For the longest time she thought her husband was her father. Some memories I would sooner forget, such as her saying I was cute and making a pass at me. Funny thing is we had a lucid day a few weeks later where she knew who I was and was asking if I was married yet and about great grandkids. 

In your activity plans, evaluate for sundowners and plan accordingly!

by the time I turn 65-70 I am going to have plans laid out. If there is one thing that going through it with my grandparents taught me, its that I refuse to make my child make those decisions. They are heart-rending. I want the plan in place, so that all that needs to happen is switches flipped. 

Thanks guys.  Once I casually mentioned "assisted living" or "home" and Mom casually mentioned "burying my body in the woods".  Due to Dad's worsening condition she may be reconsidering, at least thinking about adult day care, a place he can go for 8 hours to give her a break.

It's quite frustrating to see.

Dan

John Welsh said:

Bob the REAL oil guy. said:

Alzheimers...... the one disease I truly fear the worst. 

Also, Alzheimers...so cruel that it won't actually kill you, it just makes living impossible. 

Actually alzheimers  does kill you.  As the brain functioning declines, the parts of brain that control involuntary body functions decline resulting in death.

Alzheimers is ranked as 6th leading cause of death by CDC.

914Driver said:

Thanks guys.  Once I casually mentioned "assisted living" or "home" and Mom casually mentioned "burying my body in the woods".  Due to Dad's worsening condition she may be reconsidering, at least thinking about adult day care, a place he can go for 8 hours to give her a break.

It's quite frustrating to see.

 

Dan

Obviously your mother does not want to "abandon" your father.  Understandable.  My MIL was same way.  With in home hospice FIL was able to live out his life and pass at home peacefully surrounded by family.  

Day programs are great but there will come a time near the end were that is not an option. For example near end hospice provided aids to come in to assist with bathing, changing diapers, etc.  They provided hospital bed when he was no longer ambulatory.  Actually hospice nurses and aids become an extended family for both FIL & MIL which was comforting to both.  

Consider hospice at home for as long as possible.

ADDENDUM :  I know I sound like an insurance salesman hawking hospice, but other benefits include things like "respite" where when your family is worn out they'll give everyone a break, move father to an inpatient facility temporarily for 3 to 5 days to allow caregivers to "recharge."  Also, after father passes hospice provides 13 months of after care for survivors to provide counseling, follow ups, visits to help family adjust.

Another thing...if I had to guess your mother is likely concerned with financial impact.  Assisted living is not an option if diagnosis is alzheimers is diagnosis...to much liability for facility.  Expect to spend $6-8,000+ per month for half way decent residential  memory care (alzheimers ) facility.  If in home hospice is an option, Medicare covers it all as long as he is able to stay at home...including 13 month after care for family. 

Ovid_and_Flem said:

John Welsh said:

Bob the REAL oil guy. said:

Alzheimers...... the one disease I truly fear the worst. 

Also, Alzheimers...so cruel that it won't actually kill you, it just makes living impossible. 

Actually alzheimers  does kill you.  As the brain functioning declines, the parts of brain that control involuntary body functions decline resulting in death.

Alzheimers is ranked as 6th leading cause of death by CDC.

You beat me to it.  It definitely can cause death.  But in the most cruel circumstances, it doesn't do it quickly.       

You have my sympathies.

We thought my grandmother had it, but her odd behavior turned out to be from a brain tumor.  Similar symptoms, but mainly forgetfulness rather than losing perspective of time and reliving lost past memories as if they were current.

A friends father has it.  Definitely brutal. One minute he'll be perfectly normal and the next he'll be convinced they are broke, losing the house and starts packing to move. 

I've heard they are working on drugs to mitigate the symptoms, but there are so many variations it is difficult.