Alzheimer's advice needed...

[KFC911]

A longtime friend's mom has recently been diagnosed. Do any of you have suggestions for family members/friends? Books, movies, organizations, etc. to help prepare them for this journey? Thanks in advance...

[daepp]

It sux.

Suggestions - get lots of help. Make sure the caregivers get a break. Pray for those who will be around the patient.

It certainly seems to me - admittedly anecdotal - to be on the rise.

[GH85Carrera]

It is a horrible disease. We watched my smart and talented FIL turn into an infant.

There are support groups for the family and caregivers.

[wdfifteen]

Originally Posted by KC911

A longtime friend's mom has recently been diagnosed. Do any of you have suggestions for family members/friends? Books, movies, organizations, etc. to help prepare them for this journey? Thanks in advance...

I'll have to do some research. I had some stuff the local elder care center provided when we went through the early to mid stages with my father beginning 5 years ago. You might stop at an alzheimers care place to see if they have any books. The common picture of an alzheimers victim is that they forget things, but that is only the very early stages and it's the easiest. Expect a year or two of really bizarre behavior that is worse around sunset. Irrational anger, paranoia, running away from home, & increased libido are common. They get really scared of the craziest things. My dad kept thinking my mom was going to sell the house behind his back and move to California. She didn't get it, she just kept arguing with him and telling him it wasn't so and it escalated almost to violence. I would go get him and take him in the car to go see the police to make sure she couldn't sell the house. Of course, before we got to the police station I changed the subject, got him talking about something else, and he forgot all about it. They are like two year olds - they throw fits that go away if you distract them and get worse if you fight them. We'd end up eating ice cream and talking about WW II. His long term memory was great.
I handled Dad better than anyone because I gave up the idea that he was rational long before anyone else in the family did. He would get upset about something and everyone else would try to calm him down and he'd just get worse. I'd get pissed off right along with him and say, "By God I'm going to go take care of that!" He'd be happy that whatever was worrying him was going to be settled.
He is in the later stages now and it's a bit easier. No more running away, no more irrational ideas. Sometimes I think he knows I'm someone he's supposed to know, but I'm never sure. He for sure can't remember my name. It's actually easier now because the irrational behavior is gone.

[M.D. Holloway]

Worse thing in the world to happen IMO - saw my Mom deminish into a vegatable due to it. The books out there will provide a little insight but really folks read them to get their mind off the pain and focus on the topic in a logical aspect. Again, this is only my opinion.

One thing I noticed was that as it progressed, she had no short term memory but could recall facts from 50 years ago. She would ask the same questions minutes apart. Thats pretty typical but what was interesting was that she would never go out on her 2nd floor patio. I scared the shyt out of her. I think that folks who suffer from it have a reduced if not eliminated ability to understand the immediate past as in not even understanding their place where they are. Like they have no past vision - think of the angst you would have if you didn't even know you took a couple steps to get where you were.

I feel for ya man. Its gonna suck and it will only get worse. There were periods when we had hope. Seemed like she was getting better. The drugs seemed to help at first but then she would have a 'bad day' and our hopes were dashed.

[Lothar]

They need a really good neurologist. Ask lots of questions. Be cautious about dated information regarding treatments. There have been advances and changes in treatment protocols.

I would visit, or have them visit, Alzheimer Association, at ALZ.org. There are local offices that can provide support for patients and family.

I've been there, done that with a parent. I don't envy them.

[peppy]

I lost my mom to Alzheimer's in October....there is nothing that can prepare you for your mom forgetting who you are.

I am very sorry for your friend. Support from family and friends, talking about it and enjoy them while you can. No matter haw bad a day mom was having, she could still feel, touch and emotion.

[R K T]

Originally Posted by LubeMaster77

Worse thing in the world to happen IMO - saw my Mom deminish into a vegatable due to it. The books out there will provide a little insight but really folks read them to get their mind off the pain and focus on the topic in a logical aspect. Again, this is only my opinion.

One thing I noticed was that as it progressed, she had no short term memory but could recall facts from 50 years ago. She would ask the same questions minutes apart. Thats pretty typical but what was interesting was that she would never go out on her 2nd floor patio. I scared the shyt out of her. I think that folks who suffer from it have a reduced if not eliminated ability to understand the immediate past as in not even understanding their place where they are. Like they have no past vision - think of the angst you would have if you didn't even know you took a couple steps to get where you were.

I feel for ya man. Its gonna suck and it will only get worse. There were periods when we had hope. Seemed like she was getting better. The drugs seemed to help at first but then she would have a 'bad day' and our hopes were dashed.

Word for word....exactly what I went through with my Mom. We lived on the lake and she was terrified to go out on the deck.
She actually forgot how to swallow and refused to eat.....got down to 63 lbs at her death.
If he or she tells you that "something" happened and you know in fact that it didn't....don't dispute or argue or even try to reason with them that they are wrong. They are convinced they are right and the best thing is to just agree with them.
Her Doctor told us it was only a matter of time. When you hear those words you can't help but think that means a very short time. It doesn't. She lived 7 years after the Doc saying that. She was in Hospice for 5 years, longer than any other patient that they have had here. The last two years of her life was torture for her......and for us to watch and not be able to do anything about it.

[john70t]

Not an easy thing, my father is in the beginning stages now. The first major drop was him getting pneumonia and losing it for a week or so. Completely incoherent and hallusinating(sp). Happened so fast that we didn't know what was happening. The illness was the huge magnifier of the symptoms. Every medical proffessional was concerned with getting him back to baseline, which is where he was mentally before.

IMO, the first thing to do is get them prepared and explain it. It's not their fault that they won't be able to drive, lose body functions, tie their shoes or do all the things they could before.

Replace those things with new hobbies they can do,and keep them active. This staves off depression which leads to other problems prematurely. Depression drugs also usually have side effects.
-The more excercise and mental stimulation the better. Sitting alone in front of the tube is a downward slope. Keep them working towards something.
-When they're tired, have them take a nap in the afternoon. I've heard blueberry juice in very high doses helpsslow progression of the disease, but thats usually impractical.
-Routines help too. Dad gets a schedule daily which he can look at when he's not sure. He knows there is something to look forward to later that day.
-There may need to be some upgrades to the home to make it safer. No cooking etc., stairways may need gates or extra lighting, door chimes to prevent midnight walks, etc.

Getting frustrated doesn't do any good. It's easier to just agree and explain what needs to be done any way possible.

I think there are about 500 types of dementia technically, but all involve memory loss. Any local support group will help all the parties involved. Others with experience know all the tricks to keep yourself(the caregiver) sane and healthy.

[Heel n Toe]

Keith, one thing that is important for the family to know is that the progression of the disease is not always linear.

It can be linear for awhile, then get worse relatively suddenly, with the patient becoming combative, needing lots of help with daily activities like eating, bathing, etc. ....and sometimes losing bowel control; many times physician will tell the family they should be prepared for 24/7 caregiving in the next few months, etc.

Or to begin looking for an assisted living facility or nursing home, because if one waits until the disease gets beyond a certain point, there may be long waiting lists at the best places. It's better to look sooner than later.

[Mr.Puff]

Two of my grandparents have been afflicted with this illness. I have seen it happen two different ways.

My paternal grandfather recognized his condition first and told my father he could "feel his mind going." All his life he was very physical, and I believe this helped him because he never degraded in this way. To the end he would go on long walks with my grandmother (at the very end he did have some of the bowel problems though). His illness just affected names and specific facts.

My grandfather was a flight engineer in the Army Air Corps during WWII. He flew in a B-29 over the Himalayas and bombed Toyko. However, he could not tell you this and instead would point to a wall of pictures and documents made by my grandmother and say, "Tell them about the thing."

This happened with names too. You could tell by his excitement he knew who you were, but he got the name wrong and instead used the names of his children.

There was some redemption during his last day where he was perfectly normal. My grandmother and him spent the day together like before the disease; walking, talking... laughing again. Then he had a stroke that night and my grandmother decided to let him go. It was a good decision. Ending on a high note .

Now my maternal great grandmother is a different story. She needs 24/7 care because of the degree of her illness, and because my great grandfather is 90 as of November, 2010. (On a side note he is also a WWII veteran having fought as a sniper in the Army's Deadeyes 96th Infantry Division in the Pacific.) Alzheimer's has affected her in several different ways.

She does not remember the names of recent additions to the family, but she does know all of her great grandchildren once you remind her of the name once. To her our faces are quite a bit younger.

She does not remember where she is because there have been renovations in the recent past to their house. In her mind that wing of her house does not exist. Plus they have a big LCD TV (really big), which makes her think they are at the movies all the time.

As for my great grandmother's physical condition--it was the first thing to go. She has been in a wheelchair since her initial fall and diagnosis of Alzheimer's years ago. Plus she cannot do much of anything by herself. A caretaker feeds, clothes, washes, and watches her 24/7. However, don't think that she has lost everything.

Her memory is fantastic when it comes to old movies, trips, and events. It is almost like she is just living in the past.

I hope this gives you a better outlook on everything. There are obviously a lot more cons than pros because ideally the disease would not exist at all. I'm just saying that from my two experiences the actual person does not completely disappear.

[porsche4life]

I feel for you guys that have gone through this or are going through this. We have a few customers in the pharmacy that are in the beginning stages. Its scary to talk to them and realize that they have very little idea where they are at. Sometimes they remember who you are, sometimes they don't. We have several that think I am new, everytime they come in.

[KFC911]

Thank you each and every one for sharing, please keep the "experiences" and advice coming. You guys are the best...

ps: I'll be rereading the above posts (several times, I'm sure), and will be back later....

[Porsche-O-Phile]

Awful way to go. My grandmother died from it a few years ago. Unfortunately she was utterly preyed upon by my cousin and she died penniless and neglected, having been bled dry. The best thing you can do is be there and make the most of it, try to make things as comfortable as possible for the person afflicted - they're going to be scared and helpless as things wear on.

I'd rather be diagnosed with cancer than Alzheimer's. Terrible disease. If I ever were diagnosed, I'd seriously contemplate suicide.

[carambola]

Medications called cholinesterase inhibitors are prescribed for mild to moderate Alzheimer’s disease. These drugs may help delay or prevent symptoms from becoming worse for a limited time and may help control some behavioral symptoms. The medications include: Razadyne® (galantamine), Exelon® (rivastigmine), and Aricept® (donepezil). Another drug, Cognex® (tacrine), was the first approved cholinesterase inhibitor but is rarely prescribed today due to safety concerns.

Scientists do not yet fully understand how cholinesterase inhibitors work to treat Alzheimer’s disease, but research indicates that they prevent the breakdown of acetylcholine, a brain chemical believed to be important for memory and thinking. As Alzheimer’s progresses, the brain produces less and less acetylcholine; therefore, cholinesterase inhibitors may eventually lose their effect.

take from the website; Alzheimer's Disease Medications Fact Sheet

[ddbach]

I too am in the process of coping with this. I look at my dad and sometimes wonder where the man who taught me to enjoy cars - both driving and working on them and the use of power tools has gone. He encouraged all of us to keep working towards anything we wanted to achieve regardless of gender. Now I feel like I am working with an 82yo toddler at times.

Dad is a WWII vet and so we have resources available to us at the VA. Just had a neuropsych eval yesterday where the doc said probably Alzheimers rather than the vascular dementia they had called it 18mo ago. Will be enrolling him into Memory Clinic for closer monitoring and support services. Seek out private sector services in the same vein.

Definitely look into senior living communities. We got dad on a waiting list for one 5 blocks from my house 2 years ago and just moved him in last April. The one we chose has multiple levels of service from a condo complex, independent living apts, assisted living apts and a memory care unit. He's in an assisted living apt w/ weekly housekeeping and 2 meeals a day. Lots of activities are on the calendar and since it is in a community where he has been very involved with Am. Legion and Masons there are several people he knows living in apts there. We looked at several in the area and some of them felt like old people warehouses. By having him there I know that there is help available if I or one of my sibs cannot get to him immediately. It also allows us to do things with him on weekends rather than cleaning his house, doing laundry and cooking.

Routine is definitely very important. My sister and I took Dad on a driving vacation this past summer stopping at multiple museums which he enjoyed but getting him back into a settled routine when we got back was horrid.

A short attention span is only getting worse. He broke his glasses last week and while they are fixed them for now I refracted him yesterday and he couldn't tell me if one or two was better even when it was a big difference. I just had him read the line each time and picked the one he read best with. He eventually got to 20/25. This really emphasized how much he has declined as he previously never waffled in his choices.

I also recommend you get a FMLA (family medical leave) paper signed by the doctor for each person who is likely to help get your family member to appointments. This helps protect you at work regarding attendance. Needs to filled out each year and resubmitted. Here is the online form: http://www.dol.gov/whd/forms/WH-380-F.pdf

Good luck

[jcommin]

Originally Posted by peppy

I lost my mom to Alzheimer's in October....there is nothing that can prepare you for your mom forgetting who you are.

I am very sorry for your friend. Support from family and friends, talking about it and enjoy them while you can. No matter haw bad a day mom was having, she could still feel, touch and emotion.

Agreed. My mom had this disease for many year, the last 4 in a nursing home. You lose the love one twice, the first time when they cease to recognize you, family friends or who they are; the second when they finally pass on.

The last four years of my moms life were hard on my family. My brother won't talk about it to this (mom died in 1998)day.

I'm sorry.

[Danimal16]

Geez guys, my heart goes out to every one of you and your families that lived through this. I see my father's memory being not as sharp as it once was, but we have never had this disease on either side of the family. Maybe we, my Dad, have that going for them. God bless you, its all I can really say, as words just seem to fall short. But God bless ya anyway.

[jcommin]

The one thing I can recommend is to get their financial house in order. That includes wills, living wills, DNR (do not necessitate), Power or Attorney and the like. I would also make burial plans to legally shelter money. If they are nursing home bound (I am by no means recommending that), this cost will burn cash. You need to have some things in place before you burn thru assets. There are laws regarding moving money to protect estates. There is a 5yr look back. Get some guidance.

The family also has to be united in decision making. I did nothing w/o talking to my lawyer and accountant.

[Henry Schmidt]

My father and sister are in early stages.
The best book I've found so far is:

Amazon.com: A Dignified Life: The Best Friends Approach to Alzheimer's Care, A Guide for Family Caregivers (9780757300608): Virginia Bell, David Troxel: Books