Dealing with dementia

My mom is pretty deep into severe dementia. It's been a long, slow, sad process that has suddenly taken a sharp dive. She calls daily, to me or one of my siblings, telling us that "they" are keeping her there and won't let her go home. She makes these calls from the house I grew up in, where she has lived for the past 46 years : (

In typical (for me) fashion, I seem to remember a fragment of something I read years ago that said, with memory-impaired people, you're not supposed to contradict them; rather, to go along with the delusion. She certainly doesn't respond well to having the truth of her situation explained to her, and it feels incredibly cruel to try to tell her information that she cannot believe. But, I also don't feel right telling her that I'll come get her to bring her...home?

I would love to hear from people who have dealt with this...ideas for coping strategies, reading materials, etc. It's horrible to get off one of these calls by saying, "I love you, Mom", and having her respond, "I wish you did."

My mother has dementia. She has 24 hr home care but its difficult due to her hallucinations.

We no longer try to correct her. When she hallucinates we agree or tell that's nice. No arguing. Its made life easier.

Yes, affirm her perceptions and beliefs as long as they are not likely to lead to her doing harm. There are books for responding to Alzheimer's ("Alzheimers" seems to be the inclusive term for dementia.

There are websites that offer interaction with caregivers. The town's social welfare office may also be able to assist.

Your mother is in her home. Have you investigated assisted living? Their staff has experience responding to the needs of residents with dementia.

You didn't ask, but have you investigated elder law advice?

JJ, Alzheimers is only one form of dementia - there are many kinds, and they shouldn't be confused because they don't all affect people the same way. Referring to them all as Alzheimers perpetuates stereotypes and increases fears.

The reason why there's so much more info on Alzheimers is simply because, similarly to certain cancers, there's a strong advocacy and support network pushing for research and community resources. Luckily they also have training and info on the other dementias too, because otherwise most families would have no idea where to start looking. But they make the point themselves, Alzheimers is one of many and the 'family' name is Dementia.

These tips might help. Feel free to explore the rest of the site.

http://www.alz.org/care/dement...

joanne said:

JJ, Alzheimers is only one form of dementia - there are many kinds, and they shouldn't be confused because they don't all affect people the same way. Referring to them all as Alzheimers perpetuates stereotypes and increases fears.

I agree. My MIL's mother had a very sudden onset of dementia. We used to visit her once a month and she was fine for her age (she did need to look up dates for things that happened in the 40's, like when so-and-so died, but that is perfectly normal considering she was trying to remember dates from sixty years prior), then one month she was found sitting in her easy chair, where she had apparently been for a few days straight. She couldn't remember how long she had been there, the last time she had eaten, she couldn't remember her grandchildren's names, wasn't sure where she was, etc, and had to be put into a "memory care" unit directly from the hospital. It had the markers of vascular dementia (sudden onset) not Alzheimers. To this day my MIL is scared of getting "Alzheimer's" because she truly believes that is what her mother suffered from.

if it's "sudden onset", it's probable there was what's now called a "brain attack" (like heart attack), meaning a CVA, or a TIA, or a mini-stroke or something like that where suddenly a very small part of the brain stopped working.

If you find a friend or relative showing confusion, or similar signs to above, or slurring speech go straight to Emergency. The faster they're examined, the better outcomes are possible these days: sometimes, almost complete recovery with just some memory loss. Recovery may be slow, but is possible. (Reminds me, I must check on a friend)

MissGradenko, there is a free, peer-support helpline for those who are caregivers to someone with dementia in NJ called Care2Caregivers: http://care2caregivers.com/ The line is hosted by Rutgers University Behavioral Health Care (full disclosure - I work on a different peer line there) and funded by the NJ Dept. of Human Services. I know the women who are on the phones at Care2Caregivers, and they all have lots of experience and wisdom to share, plus are simply great listeners. Call them: 800 - 424-2494 - you'll be glad you did. Good luck.

good luck, what you're going through is so hard! I can recommend the caregivers support group, in Verona, meets monthly. Next meeting is soon. If you get on their mailing list (contact Deborah) they send out great materials and are good when you need to ask questions. Here's her latest email:

Just wanted to remind you that our next Caregivers Coalition meeting will be held on Tuesday, April 11 at 9:30am at the Verona Community Center at 880 Bloomfield Avenue in Verona. Our presentation will on "Personal Challenges and Lessons Learned" with a panel of three of our caregiver members and it will be moderated by Ruth Rothbart-Mayer, Psychotherapist and ElderCare Coach. Hope you can join us!

In just 6 weeks, our first Munch & Learn dinner presentation of the year will be held on Thursday, May 18 at HackensackUMC Mountainside located at 1 Bay Avenue in Montclair. The topic will be "Dental Care and Hygiene for your Loved One" presented by Dr. Matthew Kayne, DMD. Dr. Kayne will discuss the changes that occur with aging and how to prevent problems. He will also discuss specific strategies for accomplishing good dental care for loved ones with dementia. This dinner is for family caregivers only and reservations are a must. Please call or email me to reserve your spot!

Best,
Deb

Deborah Day
Manager, United Way Caregivers Coalition
United Way of Northern New Jersey, Suburban Essex
60 South Fullerton Avenue, Suite 205, Montclair, NJ 07042
Ph: 993.1160, x209*Fax: 973.746.6207
Deborah.Day@UnitedWayNNJ.orgeborah.Day@UnitedWayNNJ.org ">Deborah.Day@UnitedWayNNJ.org>

Another possible resource. Cross posted from another MOL thread:

Sunday, April 30: Senior Care Fair at The Woodland, 1-5pm
Come and meet providers of services for older residents and those who are caring for them, including health care support, Elderlaw, financial services, volunteer opportunities and age-friendly gadgets.

Should be lots of information there that can be of help as well as some valuable contacts. Program is sponsored by SOMA Two Towns For All Ages.

My mom like most Alzheimer's patients went through a similar phase. Things got a lot better when she went on Aricept and Namenda and moved to assisted living (not memory care at that point). The drugs helped quell her anxiety (and supposedly delayed the loss of ADLs) and the assisted living made her safer and way more social than she was in her home (for as long as she could be interactive). The move was tough but after about a week things were MUCH better than when she was living on her own.

Good luck!

Thanks for the input, everyone! As far as the assisted living, I believe that step is fairly imminent. She has some truly wonderful live-in aides right now, but it doesn't seem sustainable for a variety of reasons, and I think she will definitely feel safer in an assisted living environment. I just saw her this morning, and she was well, but I fully expect one of us will get a call to come help her get "home" later today. I guess that's a "sundowning" thing?

Anyway, I will definitely be looking into the various groups, etc. that have been recommended here. I really do appreciate it.

This is all too familiar to me. My mother died of dementia in June. I contradicted her once, and she got angry. Then again, I was able to get a point across once: I asked her about a boy who wrote in her high school yearbook. I asked if she remembered him. She said, "Of course, don't you?" I pointed out that I couldn't have been alive by then. She said she got the point, but even if she did, that sort of stuff embarrassed her. I think she spent a lot of time knowing she wasn't quite right but not being able to talk about it. Once I asked her how she was doing, and she said in an angry, defensive voice, "Perfectly normal!"

It goes up and down normally, though the general trajectory is down. We were grateful for the better days. Interestingly, lentil soup had a very good effect, as we were told it would. I suggest you try getting her to eat lentils.

My mother was also convinced she was not at home, even though she was. It was so painful for me.

That's one of the biggest issues we have now. She's "not" home. She packs her things and tries to go home, often late at night. Her aides often have to unpack.

What worked with my mother and may apply here, "You're going home as soon as the taxi gets here. Why don't you go upstairs and lie down for awhile and I will come get you when the taxi gets here."

No advice just sympathy. This must be devastatingly difficult and I'm so sorry to all of you going through (having gone through) this.

It's interesting what Tom said about his mother becoming a bit better after eating lentil soup. My dad died of Alzheimers in 1997. When we gave him a cigarette he would become lucid and sane for a while after smoking it. Was it the nicotine? I don't know. I was just grateful that there was something, that for a little while,brought him back.

My mom would cry because she wanted to see her mother and her sister - both of whom had died before her. At first, I made the mistake of trying to tell her they were dead....she looked at me with such pain and said, "My mother is dead?" I felt horrible. After that, I would tell her that they would come soon, but there was a lot of traffic, it was a long drive from Brooklyn to NJ and her sister didn't like to drive on bridges or tunnels, or the weather wasn't good and they'd come just as soon as they could. That would make her feel better without my having to repeat and repeat news that brought her pain each time she would hear it.

Mom would also sundown, her sleep/wake cycles were totally messed up and she needed to be in a Memory Care location because she would try to wander at night, or cook, or run water. All of which were very problematic, and potentially dangerous. We also learned to minimize telling her she couldn't do something...it was better for her to tell her we'd do it later or after doing something else.

Interestingly, she did have the occasional flash of lucidity. I never could connect it to a specific trigger, and it didn't happen often, but it did happen. The brain is such a puzzlement.

Here's an interesting journey pertaining to dementia that is getting a lot of traffic:

https://mollysmovement.com/

the link I provided above is for a communication tips page, and it's a New Jersey branch of the national association.

It sounds like going along with the delusion is the way to go, even if you are lying to her. Maybe tell her you'll come get her soon and take her home, but . Why don't you go to bed and rest while you wait? It might calm her and she'll forget about it by the next day. I doubt she'll ask you the next day why you didn't show up the day before.

It's also interesting that she no longer recognizes her own home. A relocation to assisted living wouldn't be stressing her by removing her from her beloved home. Her mind has already removed her, not you, so you shouldn't feel as guilty.

Such a sad process. It has started with my mom as well, but not to this point yet. But we are (mostly) all humoring her. Arguing just upsets everyone.

Anyone with a research or technical bent might find one of these articles as fascinating to know about as I did. Certainly, knowing about cultural constructions and how we label living with confusion, memory loss and the related health conditions (and required community supports) was both instructive and somehow comforting (while also frustrating).

http://collections.plos.org/de...

(PLOS: the Dementia Collection research articles featured this month)

Maybe some anecdotes will help. They sure help me.

When my mother was 3/4 demented, we visited her. My wife got there first. Mom asked my wife, "So how's your husband?" My wife said, "Good. He'll be here soon."

After I arrived, to make sure Mom knew who Carol's husband is, Carol put her arm around me and said, "See, here's my husband," and gave me a kiss.

Mom said, "Oh so you're getting a little on the side, eh?"

In the early part of her dementia my grandmother forgot who we were, she forgot that her husband had died, she forgot a lot. But seemed "with it" in many other ways. Due to this she managed to escape the locked memory care ward and make it all the way out to the parking lot. Twice. The only thing that stopped her was that both times she wandered the lot looking for her car since she thought she had driven there.