Introductions: Are you caring for someone with dementia?

Thank you for sharing your experience. We are seeing all of the things you mentioned and understand what the reality of "memory care" is. The big problem we recently had was that transitioned from level 6 through level 7 in about 10 weeks. We were trying to get her "care" plan adjusted to the significant needs of level 7 but were told we had to wait a full 90 days from the previous plan adjustments. The actual contract did not say that and allowed for adjustments as needs changed. We finally got the changes made and are now waiting to see it that helps. These were administrative problems rather than actual care provider ones. I'm guessing, people families at facilities with good admin policies probably don't need to post here, so getting recommendations for better ones are hard to come by. We are literally, pushing a huge rock up-hill and looking for a safe place to rest. We know that Mom is soon likely to slip into the final stage and things will change once again...

In my experience, the carefully written care plans look great, but are just words on a page. It all depends on the people there that very day. The reality is that your mother-in-law will receive the care she needs each particular day- no CNA will let her go without being fed, not being checked and changed regularly, not being brought out for activities/music if she enjoys the gathering, no LPN will let her go without her medications or not keep an overall eye on what’s happening. People go into these fields and take these jobs because they want to, they enjoy the work, they enjoy the people, they feel it’s being in service to others. That’s my point- a good place is one that is clean, looks bright, the rooms have natural light, the food tastes good, the activities program is active, the Medicare and state standards have been consistently met, and the people seem nice! A bookshelf full of Policies and Procedures binders in the administrator’s office is no guarantee of anything.
At some point, they may suggest moving her to a regular floor unit. Don’t say no right away, there is a lot more stimulation there- more activity, more voices, more people out and about. The Broda wheeled chairs are very comfortable, and would allow her to be safely up in a sitting area or maybe the patio in the sunshine with you!

Husband early signs of dementia.
Hi. I see Jim's picture as my former mentor. Not used mayo connect in several years and want to jump back in as aging has given me new challenges.
I want to update my profile and join several discussion groups including "just want to talk."
I think that wonderful picture of former mentor is Jim?

So your picture says you are Scott not Jim. I believe you shared your journey with me years ago. Victorious69

Hi, @virtuous69 This is Scott aka Indianascott. Not sure what photo you are referring to, but it could be me as I've shared my journey quite a bit here.

Happy to answer any questions you might have, etc!

Strength, Courage, & Peace

Welcome back @virtuous69. There are many mentors and members on Mayo Clinic Connect. Here is the Caregivers: Dementia group, I see you've already met @indiannascott a mentor.

I'm sorry to hear that your husband is showing early signs of dementia. But I'm glad you found your way back here to meet other caregivers like @billchitwood @janet7 @jeaniecdn @shirleymac @tsc and give and get support with caregiving.

Has your husband been diagnosed with dementia? Or are you noticing new signs that have you asking questions about a possible diagnosis?

Hi Colleen. My hubby is 84 and in last few years noticed we both had hearing loss and saw audiolist. Argued all the time because he misunderstood what I said and answered with strange answers. Fast forward selling our mobile home and moving to Stockton we developed new serious painful health Challenges. Noticed he became more depressed as did I. We argued constantly and I blamed it on mishearing. Now we have hearing aids which helped somewhat, but always being a nervous man, he now flies into rages. I've had 10 free counseling hours at church and read some books on dementia and am told it's not his fault. His outbursts scare me and I don't want to live the rest of my life like this. Married 53 years.We will have annual physical hopefully where I can tell our PC. He,s stubborn and in denial. Afraid to take a shower. We were in a retirement community. Became too expensive and were always under lockdown at the height of covid so moved to regular apt.

I noticed my husband, Bill, doing weird things, including mood swings, over 10 years ago - no diagnosis until this year. First he started to get really angry about things and fighting with friends (we lost a few friends due to this). Then I noticed his taste was strange. He kept having me throw out food as he was sure it was bad (a newly opened jar of peanut butter for one). When I didn't find the taste bad he would get verbally abusive to me. Then major problems with working with his computer (all my fault) - next came TV remotes, followed by his phone.
At first I thought I was reading too much into things - family and other people didn't see it. He used to do acting and commercials so is really good at Showtime!

His son Scott came to visit him last Sunday and even though Bill put on a good act Scott did pick up on things - but later only remembered how well he was doing, and his old joking self, etc. His loss of 20 pounds in less than 3 weeks became a good thing as he is really fit now, according to son. 6' and a sudden 162 pounds doesn't strike me that way.

I was advised by several people, including forum 'Scott' to keep a journal. Which is an excellent idea. So easy to forget things and dates.

Prayers your way.

Perhaps 10-15 years ago my husband started to become thoughtless and even a bit rude to me. He was a CPA With his own business. At that time it seemed he loved his business and gave it more attention than me or family. I am in a wheelchair but whenever we went out to eat with friends, he would leave me stranded and friends or my children would have to help me. He had a knee problem and he would use anything as excuse why he couldn’t help me. Then in 2019 he said his knee gave out and fell in the house not injuring himself but i needed to call fire department for a lift up. He saw his PCP and he did all kinds of test on him ruling out many things thinking maybe he had a mini stroke, including brain scan and then send him to neurologist for possible a form of dementia. He of course was having many problems in his office especially with the computer and balancing numbers. So the end of that year my son helped him close his office. My husband didn’t really do anything to help. I believe he was in denial of his problems. His life was his business.. in 2020 the neurologist pointed out some reasons for memory loss but according to his age not unreasonable age 87. Another CPA in the area gave him a small cubicle in his office as My husband felt he had to finish up his business. He had sold his business to this CPA. He went to that office daily for about a month however he was becoming incontenent of urine and while there would wet himself so the CPA employees complained of my husband odor and eventually i think the CPA asked him to not come back, as about 4 months later he stopped going to that office but continued to be on his home office computer running his business he still thought he had. Taking CE courses to be able to renew his license. That kept him “ out of my hair” because if he wasn’t in his home office he had TV on loud with either FOX news or football or baseball. I enjoy baseball with TV on all his waking hours. So of course id ask him nicely to tun it down and he had become hard of hearing so he needed to hear. I’d become angry. I tried just about everything I could hoping he would be thoughtful of me. Nothing worked. Here it is 3 years later and he sleeps up to 17 hrs a day eats very little sometimes has to be fed, has to be sponge bathed in bed. Is incontenent of BM as well as urine. I am sad for him. I have car givers for him 7 hr 7 days a week. So if you as a spouse or loved one have this kind of experience with your spouse or loved one, and suspect problems with brain, you probably are not imagining it. All his family outside of our home jus said “ oh dad has always acted that way.” But they need to live with that person 24 hr for a week and then I wonder if they would still say the same thing.
This type of condition is so devastating to me, it is I believe the hardest I’ve had to endure in my now 89 years. God bless all of you that have to experience similar conditions with your loved ones.

I so wished i had known about MCI sooner. I suspected a memory problem with my husband and he saw a neurologist who told us about some brain cell but fora man 87 not too far off normal aging. The doctor did not mention MCI so at times I thought he perhaps was miss diagnosed as he seemed okay and his family just said “ dad has always been self serving” selfish. I thought that strange because most grown people are not out and out selfish. My 2nd marriage after 45 years married to a man who had died. So of course this husband wasn’t quite as familiar to me. Anyway many times i was rude and angry with my present husband because of some of his unthoughtful ways. Now since reading about MCI i feel bad. My husband now is far enough along with his brain problem, I'm not sure what kind, anyway he Sleeps 16 hr aday, during his waking hours eats very little drinks very little and sits and looks into space does not have conversation answers only yes or no questions