Alzheimer’s - Need Advice

[Tubby & Peanut's Mom]

We are going to visit Terry's family in Denver for Thanksgiving. This is the one time of year we see them. His Dad has Alzheimer's. Last year wasn't so bad because his dad was still up and about and was a little "spacey" but for the most part was still "there." It was hard on Terry because this was the first time we had seen his dad that he didn't remember who Terry was. A few times while we were there it "came to him" and he knew Terry, but for the most part he had no idea who we were or why we were there.

Well, that's the good news. The bad news is that last February, real early in the morning he wandered off outside. When Terry's step-mom finally woke up and realized he was gone, they found him laying on the side of the street - half frozen to death! He must have wandered off - with no coat mind you - then slipped and when he fell he knocked his head on a rock and knocked himself out. Seeing as it was February it was cold and dark until all hours of the morning, so none of the neighbors noticed him laying there either. They got him to a hospital and he lived, but he is not the same at all anymore. He's in a home now, where he talks to no-one, knows no-one when they come visit, can't walk so he's in a wheel chair all the time and has shriveled to almost nothing. They have to puree' his food because he has a hard time swallowing and has almost choked to death a few times.

I know it's going to be one of the hardest things Terry has ever had to do to go see him. See, Terry deal with things by pretending they're not there. So before it wasn't so bad because he could still "see" his dad even though his dad's memory was going. Now I'm afraid that the person we visit will have no resemblance to his dad whatsoever. Instead of being able to deny that his dad is not well, this is going to be the ultimate in realityl, and I'm sure it's going to be the shock of his (Terry's) life.

So my question is, how do I help Terry deal with this? Do I purposely bring it up so he has to talk about it or do I just let it lie and wait until he brings it up? I've never had to deal with anything like this in my own life, so I'm not quite sure how to help him deal with it. I know what I would do if it were one of my parents, but I can't force that onto him.....

So any advice will be appreciated, and thanks in advance. :)

[Samantha Puppy]

I've learned that most men will talk about things in their own time. What I would do is let Terry know that it's okay to be upset/sad/scared/whatever and that you're there for him, and let him decide when he's okay to deal with it.

I'm sorry to hear about his dad. Watching the deterioration of loved ones is one of the hardest things people have to face, IMO.

[2kitties]

I don't know what to tell you but I am so sorry for Terry's dad. I know it must be awful for the whole family.
All I can say is that if it were me, I wouldn't push Terry to talk. He will when he really can't hold it in anymore. Just be there for him.

[CatDad]

Originally posted by Samantha Puppy
I've learned that most men will talk about things in their own time. What I would do is let Terry know that it's okay to be upset/sad/scared/whatever and that you're there for him, and let him decide when he's okay to deal with it.

I'm sorry to hear about his dad. Watching the deterioration of loved ones is one of the hardest things people have to face, IMO.
Being a man.;) I agree with this.

From the description of Terry the above sounds like best course. I don't know if this would work for you, but you may want to let him know this before your visit. He may blow it off at that time, but you will at least have planted a seed prior to his feelings overwhelming him. That may help further down the road. No guarantees, but it is worth a try.

This is not going to be easy for either of you. However, I think that being aware of what will probably happen is the best chance to deal with it. I really wish I had something better and more uplifting to say. If you need anything please feel free to write, I will at least give encourgement if nothing else. Who knows I may actually have something useful to say.;)

You and Terry, and the entire family will be in my prayers.

On a completly unrelated note, where in Denver. I spent my teenage years in Broomfield which is a norther suburb. Please feel free to ignore this question, you have a lot of other things on your mind.:)

[RICHARD]

I had the opportunity to see my dad daily while
he was ill.

There were 'flashes' of recognition and other times blanks stares...

In a conversation I had with my brother, he said that, "Dad wasn't Dad anymore, He wasn't the Dad we grew up with."

An observation, while sounding a little harsh,
rang with more truth than any other one that I have heard on the subject.

If you approach the subject obliquely you'll get a sense of what your hubby IS prepared to talk about. Don't hammer him with it....just toss it out like a "are you looking forward to seeing your family?" question....

You'll get the sense of where the conversation is headed....


:)

[Karen]

I have dealt with Alzheimers in loved ones. You may gently mention beforehand that you know this will be a hard visit, but don't expect and coversation from that, necessarily. Focus instead on how nice it will be to visit with his mom and other family members.

Hug his Dad, even when people don't remember who you are, often human contact is most welcome. Bring him some gift - flowers or something to sit on his dresser that will stay after you are gone, so every day, if he asks his caretakers "What is that?" they can say "Your son, Terry, brought you that when he visited."

Find time for Terry to take his mom out of the house for a lunch or some other time away - being the "well" person is a very, very hard job. This visit won't be like any other visit you;ve ever had. But it doesn't have to be all bad.


The worst, the very worst part about having a relative with Alzheimers is silently thinking "I'm gonna end up like that." And it stays in the back of your mind forever. So the repurcussions of the visit may be worse, emotionally, than the visit itself.

Good luck in dealing! You'll be in our prayers.

[moosmom]

T & P's Mom,

My SIL's husband is in the early stages of Alzheimers. It's a very debilitating disease that robs a person of their mind and memories (as you well know).

What I do with Cliff is let him talk about his past. Even if he repeats it a hundred times. He also has a tendency to come out with conversation that would be deemed inappropriate. I just laugh and tell him how funny he is.

Tell Terry to hug his Dad and lead him in conversations about the past, good memories.

I wish you well in this holiday season. Cherish the memories you have of your family. Life is too short to wonder if you will end up like they are.

Hugs and prayers,

Donna

[Tubby & Peanut's Mom]

Thanks for all the suggestions! I really like the one from Karen about buying flowers or something and having the caretaker remind him who they are from when he asks.

And I also think the hugs are important too. Terry and I have talked about this a little and I told him that what I believe is that even if it doesn't register at the time he's there, his dad will know that he was there, and it will make a difference. I believe that to be true for all diseases like this, or if someone is in a coma, etc. Inside, deep down, they know.

I explained it to him that it's like his dad has a short circuit in his brain. The knowledge is all there, it's just not connecting. Every once-in-a-while it'll be as if he goes over a bump and the circuit connects for a minute, but then the circuit will be broke again. So when the circuit is complete his dad will know that he was there, and when the circuit isn't complete, the knowledge that he was there will still be there waiting for the circuit to come together again.

And thanks to the "guys" in the group for giving me a male perspective on this. Terry doesn't talk about stuff like this much to begin with, so I figured this would be a tough one. ;)

Also, about it happening to him when he gets older. I don't have any personal experience with Alzheimer's, but I've done some research on it and from what I can tell, the "early onset" form is sometime hereditary, but seeing as how his dad was about 80 before he started getting it....I don't know, but I don't call that "early onset." I've read books where the mother was in her 50's when she first started getting it :eek: and had died by about 62 or so. That's what I would call early onset. But of course there are no guarantees and Terry has already told me to just shoot him if he gets it. ;) (sorry, I know it's nothing to joke about, but you gotta keep your sense of humor, right?)

So again, thanks for all the advice already. If there's anymore out there, it's all appreciated. :)

Thanks for all the thoughts, prayers and hugs too. Somehow I think we're going to need them. :(

[Pam]

Originally posted by Karen

Hug his Dad, even when people don't remember who you are, often human contact is most welcome. Bring him some gift - flowers or something to sit on his dresser that will stay after you are gone, so every day, if he asks his caretakers "What is that?" they can say "Your son, Terry, brought you that when he visited."



Karen has given some excellent suggestions! Although I don't have any family members who are suffering with Alzheimers, I do have a mom who is 94 and living at a convalescent center and I have spent considerable time over the last two years visiting her in this type setting and witnessed many Alzheimers sufferers there.

My father-in-law suffered a stroke about 8 years ago and has not been the same ever since. My mother-in-law goes out of her way to decorate his room with lots of pictures and things that might help him to remember his past life before the stroke. As with him and also Alzheimers patients, there are definitely some times of extreme lucidness and these things can hopefully help to bring back happier times if only momentarily. I would suggest that you maybe plan to take along a collection of photos to be displayed in his room or objects that may rekindle a warm memory. (((hugs)))

[shais_mom]

I don't have much to add, but I do want to express my support. You and your entire family will be in my thoughts and prayers.
My grandpa (mom's dad) had Alzheimer's and lost a lot of his communication skills in the last year and half before he died. The last year before he died he had a massive stroke that we thought was going to be fatal. He was in the hospital for almost a month and we waited for the call almost everyday. He lived for just 2 weeks shy of a year with a feeding tube, but had pretty much no quality of life.:(
Anyway, sorry to digress, I think touch is a big thing. Grandpa always smiled when we hugged/kissed him. Is there anything that Terry's dad enjoyed doing that he can still do? Like throwing a ball or going for walks even if it is in a wheelchair. I think the big thing is that you are there and trying to spend time with him.
Now as I look back on my earlier sentence, I realize it seems like I might be talking about a dog asking about balls or walks, but I ask that b/c my grandpa played on a softball team in the Army during WW II and that was one thing he never lost was throwing and catching a ball. Even up until he had his stroke he was throwing a soft nerf ball at/with my cousin's. And Could HE throw!!!!! If you were in the room and not paying attention he would nail you with it and when you would look at him he would wink. ;) That is how my younger cousin's spent time with him, by throwing a nerf ball. And he could do it for HOURS!!!
Another thing my grandpa was addicted to was candy. He loved Red hots and the pink (pepto bismol - like) lozenges. He would eat those by the handfuls and his eyes always lit up when he opened them:) Is there a favorite candy that he likes?
The flowers or something that he can ask about is an excellant idea. My grandma had a beanie baby in my grandpa's room. (until it got stolen:mad: :mad: :mad: )
Even up until he had his stroke, and when I would go visit him and they would ask him " Is that Staci" he would nod. He always seem to know me. My mom thinks its b/c I was the one that would "grandpa sit" when he still lived at home. I would go and stay with him if grandma needed to go out for a little while. I helped him to the bathroom and changed his depends (that only happened once I think). Not often, but when I was needed I was there for them.
But I do know that as he started to decline, it was so very hard on my grandma, my mom and my aunt and uncles. He would tell her he wanted to go home when they were already there, or ask where she was when she was there.
I think it would be redundant to say that patience is the key. And as for Terry, I guess just waiting until he is ready to talk about it if ever is the way I would deal with it. But that might not be the right way. :(

[Tubby & Peanut's Mom]

Hi Everyone :)

We're back and I just wanted to say thanks for all the advice. Things went well - considering.

Thursday was the first day we saw Terry's dad. He was sitting in a "common" room watching TV. He was alert and when he saw Terry you could see the wheels turning in his head as he tried to remember him. It was like he knew he knew him, just didn't know how, why or where he knew him from. We told him a couple times that it was his son, Terry, and he actually caught on and recognized him! He even said Terry's name twice and said "my son, Terry." Terry's stepmom said that was highly unusual, that he never says anybody's name. But he even said her name once, which took her by surprise too. Every once-in-a-while he would sort of drift off and become engrossed in the TV again, but the whole time he was awake and alert and seemed to know what was going on. We brought a picture along that had Terry, his dad and his dad's mom in it. After explaining a few times who was in the picture, his dad actually caught on and knew who it was. Although he had a tough time believing that the one person was him. The pic was taken about 15-20 years ago. It was sort of sad because when he finally realized that it was him in the pic, he said "what happened to me?" As if he knew he wasn't well. :(

But the good news was that he recognized Terry which made the whole thing a lot easier on Terry.

Friday when we visited, it was a completely different story. His dad slept almost the entire time, didn't recognize anybody and seemed like a completely different person. :(

After being recognized on Thursday, Terry seemed to handle Friday much better. He understood that it might be the last time he sees his dad alive, but he was ok with that since the alternative is to see him like this - not really living, just existing in a nursing home where he is just another old person that sits in his wheel chair and drools while the staff bustles around. :(

We left early Saturday morning so we only got to see him those two times. But all in all, I think things went extremely well, and Terry seemed to handle it all much better than I expected.

Of course we got into a big argument on the way home, which could be contributed to the stress of seeing his dad, but it could also have something to do with the 14 hour drive. :rolleyes:

So anyway, just wanted to say thank again for all the advice. Things went much better than I expected. :)

[lynnestankard]

Welcome Home Debbie - I'm just so relieved for you that things went so well - by the sound of it, much better than you'd hope for.
It's just so sad isn't it?
I'm not surprised a little family 'row' broke out on the way home - a 14 hour drive - Good Grief!!! That's one looooong drive.
Time for Tubby and Peanut cuddles methinks!! :D

Lynne

[Samantha Puppy]

Originally posted by Tubby & Peanut's Mom
It was sort of sad because when he finally realized that it was him in the pic, he said "what happened to me?" As if he knew he wasn't well. :( Ohhhh... how sad. :(

But most of all, welcome back Debbie. :) Glad to see you made it back in one piece. Please keep us updated on Terry's dad.