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Old 08-13-2012, 05:18 PM
 
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Would appreciate any been-there-doing/done-that advice. While I'm saddened by this news, it's not exactly shocking and it is somewhat of a relief to finally have an answer to her memory issues, etc. For a long time, we just thought she was being difficult.

She lives with my father who will be her primary caregiver as the dementia progresses. I live a half hour away and will be as supportive as I can. I worry equally about both of their well-being because of this disease.

Thinking I should join some sort of support group---either online or in person. Can anyone recommend any online ones (other than City-Data)?

Thank you in advance.
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Old 08-13-2012, 08:52 PM
 
Location: St. Louis
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I've been there and I feel for you and your father. It's a bumpy ride is all I have to say. There are plenty of internet resources on the net, including a caregiver forum on CD but I'm surprised that your mom's doc didn't give you all some materials about local resources--mom's doc gave us a booklet that had all the agencies listed and exactly what they do for each stage, such as home care and adult day care and nursing homes that specialize in this kind of care. Do start looking at nursing homes now and get on the waiting list for the one you all like best. Learn to lie creatively--it's hard but makes life easier for your family and esp for your mom. "Childproof" the house. Be there for your dad as well as for your mom. Learn to look interested when she tells a story for the 5000th time and in exactly the same words each time. Don't scold her when she forgets--I know you won't but I've seen it enough times and this is for others as well as for you.

Did the doc give your mom a scrip for any meds? Look for side effects--I had to make an emergency trip in one night b/c mom was so despondent she was begging to die. I took her off the aricept ASAP and it did get better. That's one of the less common side-effects but the pharmacist said it's def a possible side-effect. I did get her on some supplements though and got one called neurozyme that seemed to help and the B-vitamins helped also. Did the doc check her vit B-12 levels? A shortage can cause dementia all by itself. I will never know if the supplements would have worked though b/c she got where she was spitting them up and we found out she had some kind of cancer in her gut and she died very quickly after that with almost no pain and maybe the AD kept it from hurting? Again, we'll never know. Right before we found out about the cancer I was reading up on a medical food with coconut oil in it that some people swear by and if you google medical food and coconut oil you can read up on it too. You have to get a scrip for it. Good luck to you and your family and I wish you the best.
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Old 08-14-2012, 04:43 PM
 
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Alzheimer's Association.

Has online communities ... and call your local chapter. They have caregiver training classes taught locally.
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Old 08-15-2012, 07:27 AM
 
Location: St. Louis
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Oh yeah and while I was going through all that I subscribed to a free email newsletter called Simplifying Caregiving, Supporting Caregivers | Caring.com I learned quite a lot about how to deal with certain issues from that and about what is typical for them to be doing at any given time. I also learned the difference between dementia and delirium and began to realize that a lot of what we were seeing was delirium which means other health problems are probably involved as well, and sure enough then we found out about the cancer.
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Old 07-11-2013, 06:57 AM
 
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My mother is 91 and in the later stages of dementia. I'd like to pass on a few comments that I wish someone would have told me about. I went to a support group when my mother was first diagnosed and I heard all kinds of stories, some were scary. I decided not to go back. I have attended other support groups in the past for neurological issues my son has and know from past experience in this group that everyone is different, there are some commonalities but you just don't know how this disease is going to affect them or how long the process will take in each different stage. Some of the things I heard never happened to her. The other thing I would like to pass on is that as they forget more and more its better on them to go along with things instead of correcting them. My mother would ask me to call my dad and have him come and pick her up...he has been dead for over twenty years...I corrected her at first and it just brought about sadness and anxiety. So now when she wants us to go visit her mom and dad I just agree and let her talk.

Wishing you all blessings in your road ahead. Remember to take care of yourself.
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Old 07-11-2013, 09:44 AM
 
Location: St. Louis
9,947 posts, read 17,864,018 times
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Quote:
Originally Posted by Iwashere View Post
My mother is 91 and in the later stages of dementia. I'd like to pass on a few comments that I wish someone would have told me about. I went to a support group when my mother was first diagnosed and I heard all kinds of stories, some were scary. I decided not to go back. I have attended other support groups in the past for neurological issues my son has and know from past experience in this group that everyone is different, there are some commonalities but you just don't know how this disease is going to affect them or how long the process will take in each different stage. Some of the things I heard never happened to her. The other thing I would like to pass on is that as they forget more and more its better on them to go along with things instead of correcting them. My mother would ask me to call my dad and have him come and pick her up...he has been dead for over twenty years...I corrected her at first and it just brought about sadness and anxiety. So now when she wants us to go visit her mom and dad I just agree and let her talk.

Wishing you all blessings in your road ahead. Remember to take care of yourself.
Yes, old thread and wondering how the OP is doing? You bring up a great point and that is that you have to learn to "lie" to your loved one. At first it feels awful and sometimes they catch you in one. For instance, one night I was driving my mom home from her brother's house that was 2 states over. We had been on the road for hours and were almost home and it was getting dark and mom started talking to the ladies in the back seat. Problem is, there were no ladies, only her dog. When we got home she wanted to know where the ladies were. I told her that we'd dropped them off in Rocheport a few miles back and she gave me that look--the "now don't you lie to me young lady." A few minutes later she asked about them again and this time I just told her that they'd left. She got highly indignant and yelled, "The ingratitude, and after all we did for them!?" Sometimes you just can't win.

So yes, lie and keep the sense of humor. You'll need it and it makes things so much more pleasant. Sometimes we felt bad about laughing about these things, but if it were me and my kids taking care of me, I'd not mind if they laughed over these things and esp if it makes for happier family. We actually have some nice memories from this whole ordeal and it brought me and my brother much closer together, which is good b/c except for my girls he's pretty much all I have left. Hang in there!
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