Dementia

[LiveonJG]

My Mom came to visit over the weekend and for the first time I began to pick up on the subtle signs of deterioration. I’ve watched a few close family members embark upon this slow tortuous journey. This time will be even harder. We see each other so infrequently, only a few times a year, that I know the process will provide a starker clarity that will be so much more obvious to observe.

I know what’s coming, my kids don’t have a clue. I feel I need to enlighten them. No one did for me, as if I couldn’t figure it out myself. But they shouldn’t have to figure it out themselves. I would be remiss in my job as a parent to let that happen.

Part of me wants to talk about it now but then I think I should wait till the next visit after they see something has changed with Grandma.

I’m not trying to shield or protect them, they’re 13 and 16 and can handle it. I just want to discuss the topic after they’ve gained some perspective.

So, how have you dealt with this?

Please share your stories.

Thanks for reading this.

-John

[jimbear]

Sorry to hear about this, definitely a reality check. My Grandma suffered from Dementia. We gave her as much love and attention as we could and tried to make her as comfortable as possible. She pretty much regressed back to being a young girl and would color the heck out of the coloring books. And she loved arts and crafts in those waning years. She loved taking walks with my daughter and they made a special bond. Gram's would actually remember hanging with her more than most others. One of the hardest things for me to deal with was that this woman who I was so close to forgot completely who I was and had no clue for about 4 years before she passed. Luckily she didn't start to suffer from the serious issues of the disease until she was in her mid 80's and so we had many years of memories. My regrets lay in the slew unanswered questions I had about family and her views, the few photo albums we did not tag names to photos together, and the fact that I was younger and naive and should have done more with her while she was still there mentally. Good luck and keep faith...

[ruckman101]

Share your concerns about your matriarch with your kids now. Don't wait. You have concerns, share them with your family. Open the discussion now, don't blindside them with it after her next visit potentially years ahead.

I'd wager your kids already sense the drift.


neal

[LiveonJG]

Thanks for the replies.

-John

[Elwood]

John, your story brought up so many memories, both good and sad for me, but I wanted to say to you from my experiance that our parents can become so vulnerable to the greedy. In my case, a trusted nephew was carring for the family estate and my father in his 80's and slipping into dementia. At 89 he passed away and I did visit him on a regular basis. On my last visit in the hospital, he begged me to take him HOME. He was tied in the bed because he thru a chair out the 2nd story window and scared the nurses. He asked me to cut the ties with my riggin knife, he knew I carried in my backpack as I lived on my boat at that time. I refused and he tried to tell me that he would "Make things right" if I would just do it.

He died 5 days after that. And as I found out on the day of his funeral, my sister and her caretaking son had him sign every thing over to my nephew. He was told that it would keep the state from taking it. I was devastated for my daughters and the heritage stolen. Our lives would have been so much easier had I just looked into those "Hollow Ancient Eyes" and said "Hello in There" thx to John Prine for those lyrics. And cut the ties and took him home!!!!!!

Teach your children to respect anything that she talks about, some things won,t make sense to them or you, but so important to her that you take the time to listen.

xoxox Barb

[Highlander]

Yes, tell the kids. Just explain the what is going to happen over time. We're dealing with one situation now. She's 89 and has zero short term memory. Not much on the long term either. She is well cared for. She has little clue who I am.

[LiveonJG]

Barb, thank you for sharing that. Sounds like a tough memory to deal with. I hope you've been able to find peace.

Highlander, I know exactly what you're going through. Welcome to the forum, btw.

-John

[deschutestrout]

My mother suffers from a different kind of dementia...slowly stole all her motor skills and speech. Talk to your kids. Explain the cycle of life and eventual death. And GET THEM TO SPEND AS MUCH QUALITY TIME WITH GRANDMA AS THEY CAN!!!! You too! Sucks getting old...we slowly lose those close to us. Savor it while you can...she needs you and you need her more than ever. Now I can only talk to my mom and assume she's understanding...kids perk her up. Drag she's 2500 miles away...make the most of it NOW! Just my 2 cents. See you in three weeks...'lil campy trip. Later, Mark

[ruckman101]

I have no kids to need to explain my Mum's deteriorating grasp to, so in that regard it's simpler, but still a bear. Watched my Grandmother, her mum, wither away with the alzheimers. Nothing remotely easy about it.


neal

[RussellK]

My wife's uncle had alzheimers. At his funeral we expressed our sorrow to her aunt and she replied he had died 5 years before. For me that summed up how hard this disease is for loved ones. John the advice to tell your kids whats going on seems like sound advice. You know the deal. Follow your heart.

[zblair]

John, I am sad for this news. I am sorry brother.

The way that I dealt with it was the way I have dealt with most issues like this: I volunteer my time in order to see first hand what is involved. This is relatively easy to do if you have the inclination or your boys might. Doesn't have to be a huge commitment, either. The main thing is that they can see more objectively just how someone who is not related to them expresses the disease. This can be invaluable, particularly with children who may have a general expectation of how grandma is around them, in giving them a correct purview.

I do agree that telling your children sooner, rather than later is a good plan. I also agree with Mark's cycle of death piece.

The main thing John, is that when dealing with someone who has dementia, is that you remember to be in their world rather than try to bring them to yours. In other words, wherever they may be on the day you see them, be there. I cannot emphasize this enough.

Trying to bring someone with affected capacity to where YOUR reality is can be very frustrating to that person, and confusing to say the least. And as mentioned, being in their world can be very childlike and amusing even.

If you get a chance, google "Timeslips"; it is a program developed for dementia and alzheimer's patients. I guarantee it will make you smile.

[BellePlaine]

I'm sorry to hear about your Mom. My grandma suffered from Alzheimer's. She lived a long and happy life but it was hard none the less.

[BellePlaine]

John, have you seen this?

http://www.foodandlife.com/dementia.htm

[grandfatherjim]

We're about to go and celebrate my father's 90th. Dementia has been progressing for a few years, but hasn't been too bad until more recently. He's getting pretty out of it sometimes now, but does best when there are lots of people around. There are still lots of times when someone from outside the family wouldn't know anything's wrong.
About a year and a half ago, I took my video camera, sat on the sofa with him, and filmed u with me interviewing him about his life. I thought it might last 20 minutes but an hour and a half later we decided we'd better call it quits. He was lucid the whole time, largely due to talking about things from way back, and I learned a lot of neat stuff about him (he was in WW2 from 1939 to 1945 which generated some interesting stories, for example).
I hope I can still get my three siblings to each do an interview, and we can have it as a keepsake. Time seems to be running out however; he does have Alzheimer's for sure now.
Treasure the good times.
One more thing: the four of us siblings got together for a "summit" to determine what to do with our parental units, given the various possible scenarios: one dies first, the other dies first, my father lives to 108, etc. It was time well spent; we were able to come up with some good ideas - turns out the main issue is how to "sell" the idea to my father that they will eventually have to move out of their home to somewhere with care. They get stubborn; change is difficult, etc. With all of us on the same page though, this part has been easier.
(My mother's still with it, but has physical issues (she's 87), and continues to come up with even better solutions than the four of us put together....)
The summit will be an annual event, regardless of parental issues. There are 19 years between the four of us so we didn't really know each other much as kids. It will be a no-partner/spousal-equivalent weekend, once a year.
So, good things come from these trials.
Jim

[LiveonJG]

Thank you all so much. I pretty much knew from the start the sooner I tell my boys the better. I just needed some gentle persuasion.

Thanks again.

-John