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Lammie

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I have been looking for an online Alzheimers support group and have not been real thrilled with my search results. Anyone have one they can recommend? I'm having a hard time with Dad since Mom passed and I have been interested in finding a group that will give me tips for dealing with that and to help me find him something meaningful to do with his mind and hands.

Any help would be greatly appreciated.
 

Wewild

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Lammie":1n3gheky said:
I have been looking for an online Alzheimers support group and have not been real thrilled with my search results. Anyone have one they can recommend? I'm having a hard time with Dad since Mom passed and I have been interested in finding a group that will give me tips for dealing with that and to help me find him something meaningful to do with his mind and hands.

Any help would be greatly appreciated.

Sorry that I can't supply the link (there are many out there) but what I can say is I have seen too much of this myself.

Dad is the third in the family. Thank goodness that Mother is still here. I guess we are each others support group but you don't have that anymore. I can't imagine going through this without her. Our methods of dealing with him have to be very dynamic. It seems the morning is the worst time.

Stay strong. It is a very cruel disease.

PM me. My prayers are for all of us.
 

CKC1586

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Lammie, you may want to try your county Human Services agency or do you have a Commission on Aging? In our state those agencies can find resources for families.
 

Wisteria Farms

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We had Grandpa (who's like my father) evaluated at Washington University in St. Louis...just by going through the evaluation we were put in touch with many support options and provided with lots of ideas..

His biggest problem is sundowners..he wants to be up terrorizing everyone during the night and then sleeps all day. He has periods where he "wakes up" and is madder than [email protected] that we've taken his vehicle, sold his house, etc. He's just recently had several bouts with pneumonia...due to aspirating food...Its the hardest thing to deal with and I'm so sorry to hear you're having this...we'll keep you in our prayers. Just try to keep his routine as reliable as possible. Drugs we've used for grandpa have been Namenda and Aricept...if he's in the beginning stages, you might see if they want to prescribe one of those...best of luck.
 
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Lammie

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Wisteria Farms":2nprrz9r said:
We had Grandpa (who's like my father) evaluated at Washington University in St. Louis...just by going through the evaluation we were put in touch with many support options and provided with lots of ideas..

His biggest problem is sundowners..he wants to be up terrorizing everyone during the night and then sleeps all day. He has periods where he "wakes up" and is madder than [email protected] that we've taken his vehicle, sold his house, etc. He's just recently had several bouts with pneumonia...due to aspirating food...Its the hardest thing to deal with and I'm so sorry to hear you're having this...we'll keep you in our prayers. Just try to keep his routine as reliable as possible. Drugs we've used for grandpa have been Namenda and Aricept...if he's in the beginning stages, you might see if they want to prescribe one of those...best of luck.

I found a group in Keene that meets on Tuesdays. I need to get in touch with them and start going. Dad's about stage 5, I would guess. He sundowns bad in the late afternoon and evenings but he sleeps at night. He's been on Ambien for sleeping and it does the trick. He can't remember that Mom is gone and will call and ask where she is, then he wants to argue about it. It's really sad,not so much for me as it is for him. It breaks my heart. It's like he has the grief all over again every time you have to tell him. He can't remember how long he's been in the nursing home, here he lived before, how long he lived in Hood County, (nearly 60 years), and who his children are. He plays along with visitors, I know. pretending he knows them when he doesn't. It was Mom who wandered around at night.

It's a terrible desease, and knowing that both parents have it is very worrying for me. I don't want my kids to go through what I have gone through. I guess that's out of my hands, though.
 

Wewild

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Wisteria Farms":p8ll54st said:
He has periods where he "wakes up" and is madder than [email protected] that we've taken his vehicle, sold his house, etc.

This is our biggest trial. I think they have vivid dreams and when they wake up and things are different, they want some answers.

My Grandmother (Dad's side) didn't really do that. She just went into a shell and became an infant in time.

My Grandfather (Mother's side) was more like my Dad. I don't recall much of that as I was younger.
 

Wewild

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Lammie":v89lqblr said:
Wisteria Farms":v89lqblr said:
It's a terrible desease, and knowing that both parents have it is very worrying for me. I don't want my kids to go through what I have gone through. I guess that's out of my hands, though.

I put that down as just a part of life but I don't want my kid's to go through it either. We will keep Dad at home as long as we can. I hope can't never comes but it may. He did way more for me than what I am capable of repaying in his time on need.

Keep your head up. Be strong.
Take care.
 

Wisteria Farms

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Ladies...

We have grandpa in an assisted living but he has been moved to the wing that is just one step down from the Alzheimer's unit. They keep telling us that he needs to be IN the Alzheimer's unit (or worse a nursing home) and I'm just waiting for them to kick him out. My aunt has POA and doesn't want to admit that he's "that bad" but he really is. He's lost continance and wears a "depends" 24/7. He's been written up for getting sexually aggressive with the staff (something that he NEVER would have done in his right mind)...but she keeps begging them to not change his surroundings (which they have been wonderful) but I know he's taking way too much supervision and its only a matter of time before they make us move him.

I remember taking him out to dinner (a buffet)...Jeff and I were on the atkins diet...so we ate only the meat. Grandpa followed me through the buffet line and when we sat down I noticed he had only meat on his plate too... evidently he had copied what we did, and it made me so sad because I know he loves salads and such. Another time we took him out to eat and, you know how they'll bring you the salads before the meal? Well, he ordered something that didn't come with a salad (maybe it was a burger..I can't remember) but when the waitress brought the rest of us the salads and he didn't get one HE GOT IRATE!!!! Oh my gosh. The worst was when he P'd on a trucks tire with people INSIDE the truck...We were at a Halloween parade and he took off running..by the time my aunt caught him he'd stopped and did his business on the tire. As she was saying "dad you can't do that" she noticed the people in the truck. She was so embarrassed. Its just so hard a thing to deal with and I think mostly because you know the person they were and how it would hurt them to know themself at this stage. I'm so sorry you're going through this but I think the best thing you can do is talk with other people who know what its like...its a horrible disease... I'll keep you in my prayers ;-)
 
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Lammie

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I really appreciate everyone's input on this. It really is helpful for me.

The website I posted earlier, for Alz. support? Forget it. I know it is an awful disease and all but you can't get a question answered because everyone is too angry or too pitiful to think clearly. I don't need any more hysteria in my life. I'm not posting there anymore. I hope that, God forbid, if I ever do get this disease that my family has a better attitude than some of the folks on that board. Depressing as he77, and not just because of the illness. I think that there are better ways to discuss things than by weeping and wailing and "oh poor me". I don't want to be perceived like that. Bad as it is, there are a lot of blessings and they are worth talking about, too. Not just death and disease. I can't get sucked into that.

I guess I am spoiled on CT. This really is a fantastic community and I miss it when I can't log on. You all are my support sometimes and I know that if any one of us comes here and asks for help or prayers or just to vent, that there will be others here to listen, offer friendship and support and beyond. It really is fantastic.

I'd like to thank you again. Love you all! :heart:
 

Wewild

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Lammie":2kwdm20i said:
I I know it is an awful disease and all but you can't get a question answered because everyone is too angry or too pitiful to think clearly. I don't need any more hysteria in my life.

Good post.

We had to finally take Dad's driving capabilities away last April and should have been done sooner. It was tough. Mother said he went off on the doctor and the doctor left her a call back message. When she called back, he said he didn't need to drive anymore. It was a purty strong talk. He was making sure he cleared himself and he is a good Doctor. I get the next call. After hearing this and the whole solution up to me and having a severe problem with it because of the emotion associated with this action, I pulled the coil wires from his vehicles. We still talk about his cars but have moved more to vehicles that were there before the ones he lost. We have gone back recently to one from 1994 that was his Dad's. It seems he thinks I have it as both were white but Granddads was a ford and mines a Chevy.

We had just painted his 1993 Blazer cherry red because he was so obsessed with cherry red. I have never seen him smile that much ever in my life. Best $1400 I ever spent. The Blazer was gone less than a month latter.

There are so many good times that come from the openness they show when they are no longer capable of maintaining the walls they built for all to see. In our case anyway.

There is stress associated with the day to day handling that has to be done with him in his condition.

He is my Father. He is no burden. I hate it for him. I may be rambling but I could ramble on.

Thanks for the post.

Take care. Y'all are in our prayers.
 

Wisteria Farms

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Again, just be very very careful about the meds they prescribe. We've had so many problems with hospitals....he'll go in for a touch of pneumonia and then due to the sundowners he'll be a handful during the night. They try to sedate him and he has a reaction to it which just sends him into ORBIT. We have fought and fought trying to warn them ahead of time, "Don't give him ANYTHING other than Namenda!!!"

We went through a period prior to his diagnosis where his Dr. prescribed Prozac + Amatryptalene + something else... he was temper had been flaring and he constantly complained that he couldn't sleep. Well, due to his age, these all DID NOT MIX and we wound up in the hospital with him telling the Dr's and nurses, "I was once going to be a priest you know. The Devil is trying to make me do something bad to my wife to bring me down off my pedestal because God knows I'm special"... YOU TALK ABOUT FREAK OUT!!!
We didn't know whether to laugh or cry...
 

Wisteria Farms

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Something else...he's usually either so tired that he's almost a zombie OR he's so wound up he's like the energizer bunny. Well, when he's wound up he'll get something on his mind and then will not STOP with it. Once he wanted oysters...he wanted to make oyster stew (even though his room has no kitchen). So, got the phone book and went to the nurses station and called every store he could find asking if their oysters were "fresh"...getting irate with some when he didn't like their answer. He also remembers the days when he used to take the Amatryptalene and he remembers his pharmasist. Well, one night he was up on the phone (3a.m.) cursing this poor guy wanting to know WHY he wouldn't deliver him some sleeping pills. The nurse was mortified, my aunt had to call and apologize. Now he has sugar pills that he "thinks" are his sleeping pills.

You just never know the problems you're going to have...their mind is so funny. We took him to a funeral in Kansas City a couple months ago..well I drove. On the way home we'd come up on one of those green mileage signs and you'd see him rise up in his seat to get a good look. Finally I said, "What are you doing?"... he said, "Well, You'd better turn this car around because you're heading AWAY from St. Louis"...Nothing we could do would convince him that I was heading TOWARDS St. Louis... EVERY SINGLE SIGN he'd get all bugg-eyed looking at it and finally we just had to laugh...

We always say we're going to "write a book" of all the predicaments he's gotten us into...
 

Wewild

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Wisteria Farms":3uewd26g said:
Again, just be very very careful about the meds they prescribe. We've had so many problems with hospitals....he'll go in for a touch of pneumonia and then due to the sundowners he'll be a handful during the night. They try to sedate him and he has a reaction to it which just sends him into ORBIT.

Good post.

Been there. Susan, the girls and I went to Fl on vacation several years back and Dad started having extreme stomach pain. Mother had to take him to the hospital and he was admitted. They tried to sedate him and he went into orbit as well. I actually thought I would have to leave and come home but a friend stayed with him. It was all he could do to keep him in the bed.

Dad obsessions change from time to time and sometime aren't very noticeable. He calls the Ford dealership a lot from time to time asking about the 2 trucks he bought the day before. They are great but I know we have been a pain to them. When he was still driving, the service lady called me to tell me there was a wad of money above the sun visor in a truck that was being worked on. It wound up be over $3000.

Most folks have been real good about things that go with his condition. Some haven't.
 
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Lammie

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My brother too Dad to Oklahoma last summer and Dad just cussed him all the say there saying he was lost. I am sure he's done it with me, too. He doens't get on the phone a lot, but he has his own phone in his room and he will call his relatives and get them all confused. No obsessions yet. My Mom had onw with chocolate.

Well, Dad does have one thing. He blames my sister and her husband for everything. They put him here, they want his house, they want his money. Well, they don't want the house and there is no money. He told a nurse that when he came here, I dropped him off and said, "now get out." Makes you feel good. We were getting to the driving thing but going abruptly to the nursing home cured that. I hated to do it so suddenly, but I just broke one day. I could not drive over there again and listen to them rant about things that weren't there. He has moments when he's reall clear and then he can't remember that his wife died.

Since he came home with us for the funeral, I know exactly what meds he's on. Ambien, Neurontin, Atavan, (.5mg BID if needed for aggitation), asperin, Celexa, and a 12 hour nitro pill.
Also Flomax, Lipitor and something for his blood pressure. It's a lot but the only thing I really question is the Celeaxa. He has a planning meeting on the 16th of April and I will be there.

I hate it for him, too. I know he'll get worse. It's sad to watch.
 

Wewild

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Lammie":28uiau5f said:
I know he'll get worse. It's sad to watch.

Dad in his day was purty rough when he got mad. He wasn't big on telling someone "good job" or "I love you" nor "Thank you" if you were a family member. He grew up a lot harder than I did.

He really is easy to put at ease for the most part. At times it is a struggle. I have had more success than Mom. She has a load on her that you would understand. I don't as I am used as an outlet. He is much more vocal in his nicer thoughts and less so in the others. He told Mother "she was the $hit" the other day. He meant it in a good way.

I got to hope it won't get worse but you are probably right. I wish we could get him to cut his finger nails or let us do it for him.

I fear the summer as he will get out and walk more.
 

peg4x4

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Ok,look-you don't argue with a alshimers patent. They are ALWAYS right. You agree,you distract,you promise later we will..
You lie. Mom went to visit soandso-she'll be back soon........It's pure heii, but you've gotta remember,he's not the father you had.. I'm sorry..
 

brownmule

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im so sorry for you all that you have this road to travel {not meaning pitty, but understanding, and prayers}
i have been a hairdresser for yrs about 18 yr in my own shop and about 11-12 yrs a our local nursing home, i have had to deal with many things there. some of the hardest is doing the ladies hair now and seeing how alzheimers has completely changed them from yrs ago comming to the shop as weekly regulars.
some dont even know who i am any more, but are always{well most of the time } happy to see me.
not meaning to get on a soap box about nursing home by no means. i am lucky to work at one where we{staff} feel like the residents are family. i enjoy talking about every thing w the residents, i bring my dog in some times to visit, figgy Australian Shepperd. even the resident who dont say a whole lot enjoy him. when amber is in with trintiy 9 mo granddaughter we go to visit . shes a bigger hit than figgy LOL. my best friend is going thru the same thing you all are her dad is in the beginning stages. and lives about 100 miles from her. he is getting all turned around and thinks some one has been in his house,,and its getting worse.. he has got lost driving ended up in ohio she is gonna try to get him in here at this nursing home . he is starting to get combative.. but it is so hard on her. and we all know that it will not be easy for her to get him to leave his home.. my prayers are w/ you all. Rose
 

Wisteria Farms

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peg4x4":3u8v4jp1 said:
Ok,look-you don't argue with a alshimers patent. They are ALWAYS right. You agree,you distract,you promise later we will..
You lie. Mom went to visit soandso-she'll be back soon........It's pure heii, but you've gotta remember,he's not the father you had.. I'm sorry..

Peg,
I understand EXACTLY...Grandpa would get very aggitated about any number of things and my husband and I would tell him "something...anything" and he would be OK...

For example: He was a carpenter and built his own house...he would get on a kick where he'd say, "Ang, you and Jeff give me just a little spot of land and I'm going to build me just a little place. Then we can dig that pond and go fishing!!" Well, we'd say, "Sure Grandpa!! Where do you want your house to sit?" and he'd think and think (not remembering where the HECK I lived...only that I had a little land) but FOR THE MOMENT he was dreaming and happy. Well, my aunt would get mad about that saying it only got him wound up further...only he wouldn't...he'd usually be content in the thought and then move on to something else.

He'd start in that he was going to go down to Ford and buy him a truck...whether than say, "Ok dad, but I can't take you until tomorrow" my aunt would go into this long lecture about how he lost his license...I just never agreed with that as he had to relive the hurt every time. Oh well...its hard when you have several people in charge of someone's care. My aunt DOES do the bulk of everything for him so I have to go along with her and be thankful.
 

Wisteria Farms

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P.S....I wanted to mention... something that was very hard for our family was that when Grandpa was put into assisted living, he found a "friend" (woman). I felt pitty because his wife of 60 years was gone and he had no one. This woman has been by his side and he really is lost without her. If that happens with any of you, please be understanding... in his case its pure companionship. But, its been hard because the women in our family understand but his sons are really awful about it. They don't understand that he's NOT trying to replace grandma..he just needs someone to eat dinner with, sit and play cards with, etc.
 

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