Re: Dealing with Dementia advice?

Financialgrl · ‎03-13-2010

I've been through this twice - dad had dementia - he lived with me until I was dx with cancer and he went to live with my brother. Dad died and just as things were calming down 9 months later my BF was dx with Alzheimers which started out slow but progressed even on meds and he lived 5 years thereafter.

Both dad and BF would get frustrated easily and get angry. Both also lived in the past. If they got angry I'd often change the subject and in both cases my dad and BF were doting on grandchildren - that made it much easier bc when either headed down that road to frustration and anger I'd bring up their grandkids and ask when the last time he'd seen them.

None of this is easy - and BTW in BF's case he had 3 kids and one of those did everything. She and his granddaughter and great granddaughter came often - his other two kids rarely if ever came to see him. I mention this bc we found that even though he may get confused - right up until a week before he died things would pop into his mind where he tended to remember things (and situations) of those of us that were still constants in his life. His other kids that never came to see him - by then he'd totally forgotten them.

chrystaltree · ‎05-10-2010

As is common with various forms of dementia; her short term memory is compromised so you have to accept that. This is who she is now so when I would speak more about past experiences and share memories because she has her more of her long term memories. Also I would keep the conversations short because she is going to lose her concentration. You pick and choose what the conversation will be because can't and things will change from day to day. My mom had a dear friend with dementia and they got to the point where they didn't talk at all when my mom visited. Sometimes they would both sit and watch tv and my mom would hug her and leave. At the end, on her good days, they would sit at the kitchen table and color. Someone had brought her a stack of coloring books and she like coloring..in silence. But eventually, she withdrew inward. She was locked in and there was no reason for my mother to visit her anymore. These visits are you more than they are for her.

Lilysmom · ‎03-09-2010

@Shorty2U , I haven’t read all the replies. I lost my older sister at the age of 59 to early onset Alzheimer’s. To be honest, I think it is harder on the family to see the deterioration in their loved one than it is sometimes for the one with the illness.

I have not lived with someone 24/7 who has this disease. It must be so difficult for the caregiver. When my sister went into assisted care living, I was greatly relieved. She was not safe at home. At least when she was in care, we knew that she was safe. She was fortunate to get into such a great place.

Just go with the flow. Be agreeable. Make conversation. My sister did not know who I was. I bought her new clothes and brought her treats when I visited. I was just someone who was nice to her. She used to be a dynamo before the illness. This disease is a robber to be sure.

I hope you are are able to visit with your friend. Offering prayers for you, her and her family as you travel this road. LM

Shorty2U · ‎03-09-2010

Thank you so much for the replies and suggestions. We will be going to see them next weekend. Very good advice was given here and I will take it to heart. And for those caring for and who have cared for people with dementia, know you are angels to your loved ones who are or were suffering memory loss. Again, Thank you all. I appreciate it.

And in the end, the love you take is equal to the love you make~ The Beatles

ninjawife · ‎11-15-2011

My grandmother had early on-set dementia. Hers started around when she turned 60 and I was in high school. While I was away in college she got much worse. She was a roamer often leaving her apartment at night and wandering aroudn the city she lived in. It was not safe so my mother brought her to live with her but that was even worse. Not being in her own enviroment she was constantly aggitated and continued her roaming behavior. My mother eventually had to put her in a nursing home for her own safety. When I moved back home after college I was the only one who ever visted her in the nursing home. None of her living 5 brothers or sisters went to see her nor did her own son and youngest daughter. Even my mom stopped going to see her. I would go once a week, do her laundry and bring her treats as her appetite was good as ever-she lived for eating! I made her a memory book with pictures of her family and description of each person so the nursing home staff could read it to her as they looked at the pictures with her as it this time she could not speak. I often picked my cousin up from day care around this time and brought her to see her grandmother. My grandmother got such pleasure from interacting with a little one. She would coo at her and my cousin would feed her french fries that we bought from McDonald's. When I got married I brought all my table center pieces to the nursing home for the residents to enjoy. When she started to have trouble swallowing the doctors wanted to put her on a g-tube. I said no as her only quality of life was having the pleasure of eating. She did end up dying of respiratory failure on Easter Sunday. I went into labor the day she was burried so I did not go to her furneral. Thankfully there was a private family viewing the night before. I am so glad that I was able to be there for her as she was always there for me when I was little.

MarieIG · ‎03-10-2010

@Anonymous032819 wrote:
My advice as the daughter and caretaker to a father who had dementia is to try to move in to their world.

In other words, if she says that she sees a big purple flying dinosaur, don't try and correct her, just go with the flow, and say that you see it too.

I'll never forget one night as I was about to leave work, I spoke with my dad on my phone.

I had it on speaker, and my dad asked me where Mom was (she had been dead for about 15 -16 years at that point).

I just told him that she was out visiting friends.

He said, "She's in Sacramento isn't she?"

I just agreed with him.

He also thought that I worked in Sacramento (I don't) and said, "Well, you have a long drive ahead of you.", I was only two towns away.

Yes, it was heartbreaking, but I had to adapt to his world, and not try to force him to live in mine.

Yes, it is heartbreaking to see, but cry in private.

It's good to talk about the past.

Play music that she likes, do simple tasks together.

Since her husband is her caregiver, offer to spend time with her so that he can get out of the house alone to get a break.

That's about all of the advice that I can give.

Good luck!

I agree with this. My father went in and out. Sometimes he could not recall who I was, but he was happy to see me (huge smile). When he told me that my mother who had passed several years before was out shopping had passed, or talked about his parents in the present, I did not argue with him about that.

You need to be flexible and patient. Don't expect more from her than she can give. The same question may be repeated over and over again. Don't get upset, answer it calmly. Expect her needs and communication skills to change. There are different ways to bring her pleasure. One (as noted by @Anonymous032819 ) is music.

During his final days, I did not leave my father because he was "locked inside himself." I read to him, spoke with him, kissed him, and stroked his face and hands.

I had a young friend who was involved in a serious motor vehicle accident. She was unresponsive. There was a ten day period before she passed - during that time, I would visit her, talk to her and read to her.

Do the math.

Tinkerbell3 · ‎03-10-2010

Yes, you would never tell someone with Dementia/Alzheimer's that a loved one has died. This will do nothing but cause great pain. Every time they hear this, it's like getting the news for the first time. I would not, however, agree that I also am seeing a flying dino.

As a friend, just be present. Talk about pleasant experiences. Patients with dementia/Alzheimer's tend to respond and remember music. Talking on the phone is much more difficult. Try to engage in activities that were particular favorites. If someone enjoyed gardening, do that together.