Alzheimer's - What a TERRIBLE Disease!

D

dogs2birds

Cathlete
So as some of you know, I am at my Dad's house in Washington taking care of his wife so that my DH can help him get some things done so that he can sell his sailboat, his RV and his house b/c he doesn't think his wife has too many years left.

This Alzheimer's is awful. We were here in October and my how things have gone downhill. She babbles constantly and it's total gibberish and she sings opera (and she's not a good singer!). And then she'll start saying all kinds of words that rhyme (sad, bad, glad, mad, and on and on with made up words thrown in). She does this a lot. In the last few days she absolutely does not want my Dad to touch her, as she doesn't see him as her husband anymore. They have been married for 30 years and were sooooooo in love. She is incontinent and so he has to fight her to change her when she's a mess. This makes her very angry. She threatens to kill him many times a day. All the knives in the house are hidden per her doctor's recommendation. He refuses to put her in a home until the time that she doesn't recognize herself anymore. He doesn't care if she doesn't recognize him or not. He'll still care for her.

I can't believe my Dad does this day after day after day after day. He says anyone would do it. I don't agree. You wonder why you don't see people out in public acting like this (and trust me, she was loud and obvious today)? I think it's because most of them are in homes. So sad. And it's not her fault.

Wow - I'm full of sad posts lately! As soon as we get home and Gizmo is on the mend, nothing but happy posts. I swear! :7

Okay - she keeps covering the monitor with paper, so I think she wants my attention. :p That's what I'm here for, so she gets it! :)

Susan

http://www.picturetrail.com/dogs2birds
 
I know the feeling Susan...my Dad had Alzheimers. There is nothing worse than seeing what that disease does to a member of your family. I can only say my Dad was like a child. He did begin to get nasty with my Mom, but there is some baggage there. He started using the F word. I don't believe he ever stopped knowing who I was, but I will never know. For us, we were blessed not to see Alzheimer's in it's advanced state with my Dad as he passed away after 2 years of having it. I miss him alot...but the memories are so awesome..:)...I am so glad you are there to help...my thoughts and prayers are with you...
 
Susan,

I am so sorry your dad and family are experiencing this. Like Carole, my family went through this with my dad and he did not live to the advanced stages due to death from emphysema.

My mom dealt with so much regarding the alzheimer's (and emphysema) and had my father not been so weak from the emphysema, he would have been a very real physical threat to my mom. Finally, my sister and myself stepped in to more or less force mom into some "reality" decisions and to this day, I am not sure she truly forgives us for that or understood the necessity. Love is truly blind.

My prayers and thoughts are with your dad, you, and your entire family. This is a cruel, ugly disease and I would never wish the experience on anyone.

God bless you.
 
That is so sad, Susan. Your father sounds like a wonderful man. My grandmother had it for several years and both of my parents retired early to care for her full time. They also felt strongly about not putting her in a home. I still don't know how they did it.
 
My sympathy, Susan. My father-in-law had alzheimers. It was very difficult for my MIL. She kept him at home for as long as she could, which was hard for her physically and emotionally. Then he went into a home, which was even harder for her to do. I'll always remember at his funeral when MIL said to my DH, "Well, we already said goodbye to him once. Let's go do it again." Best wishes, Susan.
 
This is a terrible disease Susan. My Dad's brothers and sisters had it and I believe he's in the early stages of it. My Mom is 18 years younger than him (thank goodness)so he's able to stay home with her.
You're Dad is doing a wonderful job. And that's probably how he feels. She's his wife, it's his job to take care of her. I'll keep them in my prayers.

Kali

www.PictureTrail.com/kkali
 
I have a friend who's grandfather has it. I hate to hear the stories about how such a wonderful man is slowly deteriorating because of this disease. It's sooo sad. I'm sorry that your family is going through this Susan.
 
Susan, my heart goes out to you and your family.

I don't have any direct experience with Alzheimer's, but I work as a medical writer at a hospital that conducts research on the disease. I've written on it myself and am horrified about what it does to a person.

This may not comfort you now, because it didn't come in time for you. But scientists are making huge strides in understanding the disease, and there is real hope that a cure can be found. You might want to put this thought on the back burner, and I apologize in advance if it's something that offends you: the best way right now for scientists to study the disease is by obtaining the brains of deceased victims. When your dad's wife passes away, the family might want to consider such a donation, if there's a medical facility nearby that handles such arrangements.
 
Hi Susan,

My MIL is in the early stages and my husband has taken on all this responsiblity because my FIL has already passed and both his sister live out of town. She is only 68 but acts like she is 80 years old. It is hard to watch and handle. My thoughts and prayers are with you.

Therese
 
Susan,

Please know that you and your family are in my prayers. Alzheimer's is such a monster! What a dear man your dad is for taking such good care of his wife. You come from good stock:+

Michele
 
Susan,

My heart goes out to you, your dad, and the rest of your family. I have no direct experience with Alzheimer's. I just want you to know I was thinking of you.

((((((HUGS)))))

Dallas
 
You all are SO wonderful!!! Thanks for all of your support - again! Seems I've been getting a lot of that from all of you lately. :)

I started my day early this morning with a wonderful 65 minute run. I had planned on running on the treadmill but packed the wrong size batteries for my MP3 so I could use Cardio Coach (I'll have run to the store during nap time - which is only about 20-30 minutes tops!). But it was a blessing because it felt soooo good to get outside and run in the fresh air. It's so beautiful here. The hills were killer but my HR was in the mid-180's and to 191 so I'm ready for the day!

So far so good today. She's telling me about Hooley Pooley who she says is a real person. The story is cracking her up. I can't understand a word of it other than Hooley Pooley is real and female. Hehehe. She just said, "We're having such a good time together, aren't we?" That makes me happy that she's having some fun. She just had a 10 minute power nap and so her sentences start out with real words and then move to gibberish.

I'm going to work today on trying to get some assistance for my Dad. Wish me luck! Thanks again for all of your support. I'm so glad I found you all. :)

Susan

"Until one has loved an animal, a part of one's soul remains unawakened." - Anatole France

http://www.picturetrail.com/dogs2birds
 
My mom, who is 85, was diagnosed in 2004; my dad is 90 and they live in a house and they are doing okay. I know I have a long road ahead regarding her care if she outlives my dad. Dad is okay and still drives in the neighborhood. Mom stays home, does all the chores, cleaning and cooking and is okay right now except for short term memory loss - I have to say she is not bad at all (she doesn't know she has it). She is on aricept which I really don't know if it helps or not. I go with hubby every Saturday and do the food shopping and laundry and all the banking as I am Durable Power of Attorney for both. I don't want mom in a home, but eventually I know this will happen. All their money will be going to nursing care until medicaid takes over which they won't until all their life savings is gone. I dread the day something happens to either one of them and decisions have to be made. Here I am 60 years old, still working full time, and worrying about this. I love them very much and would be lost without them. My wonderful hubby said he would quit his job and take care of mom if necessary. I also have two brothers who will have to help too. Thanks for listening. maryann
 
My prayers are with you and your family. My grandmother had it for over ten years. By the time she passed, she had forgotten all seventeen of her children and her husband. She regressed and behaved like a five year old. She beleived she was living on a farm with barn animals.

It's a hard disease to watch, but it does have some funny moments. When we put my grandmother in a home, she had an admirer. My grandmother had to be on a low sugar diet, but she loved sweets. This elderly gentleman would save his dessert for her and sneak it into her room in the afternoon. And then she'd chase him out, beating him with her slipper!! I have to smile when I think of my tiny little grandmother (98 lbs, soaking wet) chasing someone with her bathroom slipper.

Make sure your Dad has some kind of weekly relief. Caring for someone like that is really hard and everyone needs a breather, regardless of what he says. Enjoy Hooley Pooley and god bless.
 
My FIL has it now and it really is awful. I see it from the view point of how some people can really take advantage of these poor souls. He has a lady friend who seems to care for him but also seems to keep things from DH and Brother In Law. She is not always very cooperative and wants to let him keep his freedoms which includes letting him drive, which he shouldn't be.
Also DH's sister, my SIL somehow got power of attny. and makes all decisions but she lives 1500 miles away and doesn't see what we see. He is on lots of different meds and can't keep them straight, gets them mixed up, still lives alone and drives. He shouldn't be doing any of these which is obvious to anyone, but he has his lady friend and my SIL making decisions to let him be on his own. DH and BIL are very frustrated but have no power to do anything. It is so sad to watch. I truly think SIL may still be in denial of how bad things really are and the lady friend only tells her somethings but not everything. I would love to report this as neglect but don't know how or to who when SIL has POA. DH's mother passed on in 2001, I always wondered if she knew something was going on and covered for him, he was diagnosed only a year after her passing or so. I find it hard to believe that it could set in that fast. It is just so hard to watch!
Vent over!
Colleen
 
Hi Susan,

I know what you are going through, my Mom has Alzheimer's also. She is towards the end now, but she would repeat things constantly. I'm so depressed for my Mom. It is heartbreaking. My sister is taking care of her, (bless her soul). I think it is worse on the pople taking care of the Alzheimer's person. So So sad.

Janie
 
Jane, Maryann and everyone else who is dealing with or has dealt with this awful disease I'm so sorry.

Today I got my Dad to visit an Alzheimer's care facility. In addition to the people who live there full-time (for a whopping $6,000 a month!!!), they also do day care from an hour up to a few days or whatever you need. It's only $10 an hour or $12 after 6pm. And they feed them if they're there during meal time. As for finding the humor - oh my goodness if you could have seen what I saw in Mary K's interactions with some other ladies - one of the ladies in particular was hilarious. It was so funny! None of them can hear a thing really and they get so confused at each other but somehow carry on a conversation. I wish I could relay the whole thing to you all b/c it was so fun to watch. They're happy with each other. I'm hoping my Dad will decide to do it at least once a week. He's very stubborn but he's also very worn out. We're going to try to get him to sign up Monday before we leave (we leave on Tuesday). Fingers crossed!!!

Ooops - I "hear" the power nap has just ended. Gotta run. :)

Susan

"Until one has loved an animal, a part of one's soul remains unawakened." - Anatole France

http://www.picturetrail.com/dogs2birds
 
Susan,

I am so sorry to read of your Dad and his wife. Alzheimer's really is awful, and so hard on families. Bless you and your Dad for being such wonderful caregivers. I really feel for you.

I am unsure about the rules and regulations in Washington, but your Dad's wife may be eligible for some home care or hospice. All states are different, but it could be worth checking out, or talking to her physician about. When I was doing home health, we couldn't take patients who had Alzheimer's disease unless they had something else wrong that we could improve through our care or teaching, but hospice could and did accept them. They provided care such as an aide for bathing and skin care (due to incontinence), personal supplies such as adult briefs, medicines related to the disease, teaching and support for the family members. Here is a link to Washington that might give you some info.


http://www.doh.wa.gov/hsqa/fsl/HHHACS_HomeCareAgencies.htm

Julie
 
Oh, Susan, I am so sorry for what your Dad is going through. He is such a trooper. My DIL works at the Long Island Alzheimer's Foundation as a geriatric social worker and I have learned so much about the disease from her. My DH and stepson will be cycling in the "Ride to Remember" in Long Island to benefit the foundation, which my stepson and DIL helped to organize. It feels like we are still lightyears away from finding ways to prevent or reverse this horrible disease.
-Nancy
 
My grandmother and mother-in-law both have Alzheimer's - both have had it for over 10 years, and are very healthy physically. You can imagine some of the horror stories we have from trying to deal with people who are throwing temper tantrums like toddlers, but are 5 feet 10 inches tall (especially when you're driving on the freeway and they're hitting you as hard as they can because they suddenly don't recognize you and think they're being kidnapped).

But I digress - the reason I'm posting is to say if you are on the fence about whether someone does or doesn't have this disease, get them to the doctor immediately, no matter if feelings get hurt. There are some wonderful new drugs that greatly extend the duration of the early stage, but they have to be started very early on. My parents recognized this and got treatment for my grandmother immediately. She's doing much better than my mother-in-law, even though she's had the disease about 5 years longer. My husband and his sister were in denial for such a long time that by the time they had MIL tested, she was already in the middle stage, and the drugs did nothing for her.

It's the most cruel disease you can imagine. God bless to all Alzheimer's caretakers.
 
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