Dealing with a loved one''s Alzheimer''s from far away

[gwendolyn]

To start off, I should say that I''m not entirely sure what the point of my posting this is. There isn''t a great deal of flexibility in my situation, but I suppose I am hoping maybe someone here will have some ideas for me.

My great-uncle (my grandfather''s brother) was diagnosed with Alzheimer''s last February. He was put on medication, declined slowly, then quickly, and passed away in July. I was here in England working on my master''s degree and did not get to see him before he died, and was not able to fly back for the funeral.

Two months ago, my grandfather has been diagnosed with Alzheimer''s and was put on medication for it. He has been legally blind for years and sometimes gets upset when I send letters or cards to him because he feels frustrated by the fact that he can''t read it himself. My grandmother is still living and reads things to him, but often he reacts poorly to his dependency upon her. He has never enjoyed talking on the phone and just sits there without saying anything. I have thought about getting a tape recorder so I can tape record messages to him (they don''t use computers), but they only have a radio in the house because they frown on music.

I am hoping to fly back to the US in April over my 2-week Easter break and visit him, but worry a bit that it''s 5 months away and he was put on the medication 2 months ago--worried because Easter is 7 months away and my great-uncle declined and died within 6 months. Obviously my grandfather is not his brother, but am concerned about how long it is until I have the chance to see him again. I''m pretty sure it''ll break my heart if the next time I see him, he won''t recognize me. But what else can I do from way over here?

Anyway, if anyone has any ideas, please share them with me. Otherwise, I could use a hug or two.

Thanks for listening.

 

[Miscka]

Gwen, honey, I will respond to this later, but I just wanted to send you hugs!! I worked extensively with AD patients for 2 years, and my grandfather has it as well. I have some thoughts to share, but am running out the door. More later!

 

[neatfreak]

AD is a very hard disease, and one that often impacts the family more than the patient, especially once the patient has declined to a certain point. Unfortunately at this point there is no way to predict how fast he'll decline. Some people decline quickly and others it takes years and years. I would say to try and get back as soon as you can to make sure you have the best chance to talk to him. But at the same time, you need to make sure your expectations aren't high, some days are better than others for many patients so it is very possible he might not recognize you even when you are back. Honestly, the best thing you can do for your grandfather at this point is to support your grandMOTHER. The quality of care an AD patient receives is greatly related to how stressed out their caregiver is.

Big hugs honey.

 

[gwendolyn]

Oh, oops, in the original post I meant to say that my uncle declined slowly 'at first,' and then declined very quickly the month or so before his death. Doesn't really make sense the way I wrote it.



Thank you for the hugs, Miscka! I eagerly await your insights and suggestions, m'dear.



neatfreak, thank you for your thoughtful (and thought provoking) post, and your hugs too, sweetie. I was originally planning on going home for Christmas this year, but then the credit crunch happened and it took my boyfriend longer to get a job than we had thought (because unemployment rose by leaps and bounds), so a couple of months ago, I had to give up the idea of going home next month. I will not have enough time to fly home until April, so I'm hoping he will stay (relatively) healthy until then, and much longer, hopefully.

The part about supporting my grandmother is a somewhat complicated subject. She and I have been distant since I was a young teen due to her abusive behaviour towards me from the time I was a young child. My grandfather and I stopped being close once he lost his sight because I could no longer communicate directly with him anymore (we often wrote each other letters and sent cards). He is overall a sweet man (although he never spoke out against what she did to me) and I still love him. However, I cannot say the same of my grandmother, and it would be very difficult for me to offer support to her due to our past. I may be able to do it for his benefit, but it will take some long, hard thinking and soul-searching for me to decide that.

 

[doodle]

hugs, hugs, hugs! AD runs in my family, too, and it can be really hard. i think the tape recorder idea is a nice one, and if they only have a radio, you could always buy one of the small tape recorders like journalists, etc. use to record notes and mail the whole tape recorder to him or something. i''d talk to your grandmother about it; since she''s with him all the time, she could probably give you the most insight as to what would be best, and knowing how much you care would probably be a great comfort to her, too. just brace yourself for the in and out of it as best you can--the hardest part of coping with someone with AD is never knowing when they''ll have a good day and when not.

random question: can he read braille?

 

[dragonfly411]

gwen - I too think the tape recorder would be a sweet idea. maybe you could send the tape in the recorder (like a hand held voice recorder) and at the end of the message say something like " I would love if you would record back to me" as a way of carrying on your letters? I''m sorry to hear about what is happening to him, hugs to you and I''ll keep you both in my prayers.

 

[Lauren8211]

No advice here, just wanted to drop in and give ((((hugs)))) and tell you that I''m sorry you, your grandfather, and your family are experiencing this.

I''ll keep you in my thoughts!

 

[gwendolyn]

Aww, thank you, doodle, dragonfly411 and elle! Maybe it sounds silly, but I really do appreciate your thoughts and virtual hugs.

doodle, no, he doesn''t know braille. For a long time now, he''s been resigned himself to not being able to learn anything new (my dad, his son) bought my grandparents a computer 6 or 8 years ago (before he went blind) and they just let it collect dust because neither of them think they can learn to use it to do anything.

I like the idea of sending a hand held tape recorder over with tape intact. It''ll be a lot more expensive than just a regular old letter, but I think it might be worth it.

 

[Bia]

Gwennie, sorry to hear this about your grandfather. As someone who knows what you're going through, I understand the pangs in your heart. Although my grandfather doesn't suffer from Alzheimer's, he is legally blind. He also can't walk on his own, as he is very frail. Being that I live approx 6 hours away, I don't see him often. The hardest part of getting older, IMO, is seeing your loved ones grow old and sick--this has been really hard for me anyway. Especially in the last couple of years, as many of my elder relatives have passed on (including my favorite grandmother

)

I'm sorry you can't make it to the States to see him for the holidays, that really stinks (darned economy!). I did like the idea of buying a tape recorder for you and he to share (maybe you could wrap it as a Christmas present?). This way, you can just send him messages whenever you want and can encourage him to do the same. Or even write the letters out and just narrate them for him...whatever you decide I am sure he'll be happy as a king.

(((hugs)))

 

[Ellen]

gwen, I too was going to suggest the tape recorder, then you can send him tapes as often as you''d like. (buy I would try to get home as soon as you can)

As for you and your grandmother, it might be tricky, but I would try to get along with her for your grandpa''s sake. I know what that means. If you read the beginning of my elderly thread, you''ll see that I am my mom''s only caretaker, and we were never close. She has no idea how she has truly treated me over the years. I had a lot of resentment/hurt/anger built up, and taking care of her was the last thing I wanted to be forced to do. But, as there was no one else around, I had to put on my big girl pants, do a lot of soul searching, and pray, a lot.

Things are much better than they were. They will never be perfect, but then what in life is? But they are tolerable, and I am more at peace with many things. All this to say, anything is possible. I never would have guessed it could get to this point with my mom, and I have much hope for you and your gramma.

I wish you much luck, I know how hard this must be. I lost my MIL to ALZ, it''s a very cruel, sad disease. {{{hugs}}}

 

[gwendolyn]

Bia, sweets, thank you so much for your post. It is so hard to watch elderly family members get frail and sick. I too lost my favourite grandmother recently and I felt so lost. Big hugs to you!! (((hugs)))

Ellen, thank you so, so much for your post. I think you probably know better than most how I feel, and the soul searching that I am going through regarding my grandmother''s part in my grandfather''s illness. I do not think I will be able to go home any sooner than April (unless James gets a fantastic job very soon which is unlikely), so the tape idea will have to suffice for now. I wish I could put a photo collage together for him of James and I and the places we''ve been together to help bridge the gap a bit more, but of course he cannot see. Sometimes I forget, since my favourite memories of him are from my childhood.

Anyway, thank you again for sharing your experiences with me. Lots of hugs to you, my dear. (((hugs)))

 

[Ellen]

You''re welcome sweetie. I hope things go well, I know how special grandparents are, and the memories we have of them. I still think of my dad''s dad, he made the most awesome french toast in the world. I can''t duplicate it, but I think of him when I make it.

Just do what you can, and that''s all you can do. And thanks for the hugs you.

 

[Irishgrrrl]

Gwen, I''m so sorry.

My Grandmother (on my Dad''s side) passed away from Alzheimer''s right before Christmas of last year. As others have mentioned, Alzheimer''s patients have their good days and their bad days. As the disease progresses, the good days become fewer and farther between, unfortunately. When my Gran was sick, I think the good days were sometimes actually harder than the bad days, for her and for us. On the good days, she was so "with it" that she KNEW how things were on the bad days, if that makes any sense. She would get so frustrated, because she knew that her "clarity" would be gone again soon.

I don''t have much advice, since I wasn''t her primary caretaker, but I just wanted to give you hugs. So sorry that you''re going through this!

 

[Miscka]

OK Gwen---here I go. I haven''t read the entire thread so sorry if I missed something.

First of all, I am so sorry you are going through this. AD is an incredibly devastating disease, particularly for the families.

Now, 6 months is a very rapid decline. Many many patients live for years and years after a diagnosis. The meds out there are decent (do you know what he is taking? Aricept and Namenda?), and what normally happens is that a patient will eventually die of something else secondary to old age. I had patients that stayed stable at one point in the disease for 5 years or more. Not as common, but it does happen. So please, don''t stress yourself out too much for not getting there until Easter.

As far as other things you can do-who else is caring for him? I ditto NF on the caregiver support being crucial. Part of my job was meeting with the caregivers and assessing their difficulties and reactions to the patient. Caring for someone with AD is a full-time job, and it gets increasingly difficult throughout the progression. I know you have issues with her, and I definitely dont fault you there. Can you call and speak to him at all? I know that would be $$$ but its a thought.

As far as the visit goes-please don''t let it break your heart if he doesn''t recognize you. He very well may, the patterns of what AD patients remember are different for everyone, and can vary from day to day. The best advice I can give is to just take it in stride, and talk with him about the things he enjoys. Lots of times the areas of interest that they had when they were younger will hold over. Some like to tell stories about their families (that you will probably already know) some like to talk about a war, being on the whatever team when they were younger, collecting historical figurines, driving trucks-whatever. To me it was always heart warming to find these topics that they liked and encourage that conversation. I would remember each one''s favorite topic and bring it up on future visits and their eyes would just light up. It eliminates confusion if you let them talk and ask simple questions but avoid areas that confuse/stress them out. Let him lead if he will. He may want to tell you the same story 800 times. Let him!

My grandfather has had AD for 7 years now. He hasn''t recognized me in a long time. But he is still Grandad, and he still loves to talk about the outdoors and when he was in the army. Even if we cant relate on the same level, I enjoy seeing those things remain in him. You just have to change your expectations.

I hope some of this has helped/made sense. AD is a truly individualistic disease, which makes it difficult to navigate. Hugs to you, and to the rest of your family. Please let me know if you want to talk about it anymore, have any other questions, anything!!

 

[Rhea]

Gwen, I don''t handle any very good or bad news well from over here. I''m not sure how to deal with it and so far time doesn''t seem to be improving anything, just making it easier for friends and family to forget about staying in touch with me. My grandmother doesn''t have alzheimer''s, but she''s fairly ill and has been for some time. I wish you the best in dealing with everything.

 

[musey]

Hugs, Gwen. I know it''s hard.

Everyone''s decline rate is different. My grandmother was diagnosed almost 10 years ago--I have the special honor

of being the only one who noticed the first signs for the three years prior to that, but no one believed me. She declined rapidly for the first year after the diagnosis, and by that time she was completely dependent (for everything) on my grandfather. It started to wear on him and he finally put her in assisted living.

She''s been there for nearly 6 years, with really no change. Her medications have had to be adjusted, but she''s been maintaining in a nearly vegetative state (she can wake up and eat with assistance, and that''s about it) for that time.


Sorry if that''s more depressing than helpful... what I was trying to say is that even if your uncle passed quickly, it doesn''t mean your grandfather will. He could be around for many years to come

 

[gwendolyn]

Thanks so much for your thoughtful posts, ladies. I haven''t been able to read through this thread and come up with replies without crying so please don''t think I''m ignoring you--just feeling rather emotional lately. I promise to give you all the individual thanks and replies that you deserve when I''m feeling a bit better.

 

[bee*]

Sending lots of hugs Gwen. I''m thinking of you!

 

[Miscka]

Gwen, just thinking about you and hope all is well. Hugs!!!!

 

[honey22]

Gwen, sorry to hear this news sweetie. You must be so far away from your family at this time.

I like the tape recorder idea too, even if it''s not a total success from his point of view, it would be good for you to get it all out and actually say those words. I hope that he can send you something back, no matter how small.

My Dad''s uncle was like my grandfather, we were very close. When he died, I was finishing my honours thesis and he was coming home from hospital so I didn''t see him (he was previously in a coma and I had seen him then, but didnt make it in after he woke up). I was expecting to see him at home the next week when I had submitted, but we got a phone call in the middle of the night to say he had passed away suddenly and totally unexpectedly (they actually had to call in the coroner, as it was unexplained death). I was devastated and I don''t think I will ever be able to forgive myself for not going in. I actually work in the same hospital as he passed away and everytime I walk out the building, especially in the dark, I remember that night leaving the hospital and feeling so defeated. I hate that street! A few months later, Pat and I moved into his home (parents inherited it) and I found his answering machine tape. It''s just a simple "Hi, leave a message", but I still have that tape 5 years later, and it gives me comfort to know I can hear his voice just one more time. I truly hope you will have that too.

sending you lots of hugs sweetie.