I am the wife of someone who is living with Alzheimers...

LauraCD

...And I am encouraging him to look at this forum in order to not feel so alone and disconnected in his this new way of living. He was diagnosed with dementia due to Alzheimer's (currently MCI) on May 31, 2023. His journey to the ultimate diagnosis was agonizing -- he knew 3 years ago something was going wrong and 4 neurologists later we finally have a doctor who has identified it and this doctor cares. I am finding in looking for support for him that most Alzheimer's organizations provide admirable care and attention for the caregivers but little, if anything, for the patient themselves. That's is why I am writing here. For example he was telling me this morning that when trying to do simple things (telling time, doing simple arithmetic, remembering his own phone number) he realizes again he longer can. Of course I can see that and help him in any way I can but that sometimes just underscores a dependency he never anticipated. And the tragedy of realizing he no longer can do what came so easily for him over the last 50+ years leaves him feeling lost and anxious and defeated. I am thinking if this kind of experience were more openly shared amongst those who live it every day that there would be such a benefit to gaining support in that others are living the same and maybe some ideas can be realized for any ways to cope with these emotionally and practically. At the very least I want for him to not feel so alone. Thank you for any input in advance.

Laura

2Hands

I am the daughter of an AD and was her primary care giver... I just passed MCI testing. But more and more I can feel cognitian slipping away. [They did not use the age and education modifications... ]

My mom found great relief in doing the things she did remember, instead of those that had slipped away. Finding ways to succeed!

For Mom, a retired primary school teacher, she did ; puppets, songs. But carefully chosen puzzels [500, the 100, then easy number of pieces, NOT hard ones] We searched for pictures that were not childish.

Think of things he did before he retired, encourage him to succeed, and value that. If that is his youth and singing "Good morning to you, good morning to you, we're all in ouur places with bright shinny faces". But did they do that in his you? I don't know my mom taught school from the 1940's to 1980's. but she loved sing-a-long well into 1970's folk songs..

For my dad it was cleaning auto parts, we just never got around to rebuilding the carborator.

LauraCD

Thank you 2Hands for your insight. Unfortunately my husband's world was his career in telecommunications with many people working with and for him. He was actually able to extend his career past his retirement by working as a consultant 2 days a week within the business he was comfortable in. He was sadly let go a year ago after ten years. He is one of those men who has always been defined by his career primarily within a very structured environment. He has no other hobbies or interests but being with people is important to him. I am trying to encourage him to add structure to his days (getting up and going to bed at the same time, going to the gym regularly, etc.) but he is so depressed that motivation is just not there. I am thinking of getting a dog actually for companionship and so that when he goes for a walk he can meet other people on (which he would love). In the future I think some sort of adult day care would be helpful to him but he is not there yet and certainly wouldn't entertain that. I would love it if there were some kind of support group for Alzheimer's patients to just share and give of their experiences so that he doesn't feel so alone.

Iris L.

Welcome LauraCD. It's nice of you to want to help your DH connect with others. Depression after a diagnosis is very real, I fell into a deep depression when I was told by a geriatrician, "You have to accept that you have dementia!" Only the support of my peers on this board brought me out of the depression.

One of the axioms that was promoted was to remember the Serenity Prayer. God, grant me the Serenity to accept the things I cannot change, the courage to change the things I can, and the wisdom to know the difference." We were always encouraged to focus on what we can do, and not on what we no longer can do. This is very important. We can find ways to accommodate our new reality.

It is important to maintain healthy lifestyle habits. We call these Best Practices. Socialization is part of Best Practices. Some chapters of the Alzheimer's Association offer a Memory Club, which are monthly or weekly gatherings for PWDs (persons with dementia). You can call your local chapter at 1-800-272-3900 and ask is there is a Memory Club. You can ask to speak with the Early Stage Coordinator.

Depending upon different factors, it might be possible for the PWD to attend a regular Senior Center or a gymnasium for older adults. Adult Day Care Centers are for older adults with varying disabilities and have many offerings.

Personally, I don’t usually recommend getting a new pet for a PWD. Animals are trip hazards. All animals need consistency in communication, and PWDs can be inconsistent in communicating with an animal, resulting in confusion and unhappiness on the part of the animal and the guardian. PWDs who are losing their ability to care for themselves cannot care for a defenseless animal. Animal care becomes an additional burden in daily life, both for the PWD and for the caregiver who already has enough to handle.

Avoid having the PWD sit in front of a TV all day. Look into the program "I Remember Better When I Paint". Some groups may offer this. There are groups that offer singing programs for PWDs. You will have to search for these. You want to look for failure-free activities.

You can also post on the Spouse/Partner board for further suggestions.

Iris

LauraCD

Thank you so much Iris,

Your comments really help and your considerations regarding getting a pet are things I did not really think out - so thank you for that. There was a Memory Club in our area some time ago but it seems to have disbanded -- not sure. I will follow up with my local Alzheimer's Association to see if there is one now as I forgot all about that. Again, thank you.

Laura

Iris L.

Laura, probably most Memory Clubs were suspended during the lockdowns, and a new group of people will have to start meeting. If you go to the Spouse/ Partner board and look for "In the Good Ol Days" thread by Mr. Toad, he talks about how he started movie night for his DW and others.

If you cannot find a Memory Club, you might band with another couple and organize your own activities. Other members have done that.

Iris

labarden

Hi Laura.. I'm Leslie. Mu husband was first diagnosed with frontotemporal dementia in 2018, per a brain MRI. However, his diagnosis has changed to early-onset Alzheimers, per his PET scan. I'm his primary & only caregiver. It is so frustrating & difficult sometimes, & I'm worn out. I just joined this community to find support for myself.

I honestly do not know what my husband & I are up against with this horrible disease.

I'm hoping for insight & support. And perhaps I can offer support for someone as well.

jrnyon

Hello, I was diagnosed with alzheimer's almost 2 years ago, which definitely changed my outlook on life and much of what I do now. I needed retire early, sold condo, and moved to another town (beautiful in Colorado mountains) to live with my daughter, her husband, and 2 young granddaughters. They have added on to their home so I could have own room and a bit of privacy. I feel so blessed and thankful. I'm 65 now. I would really enjoy hearing from any of you...looking forward! Karen

2dogssing

Hello, I was diagnosed with MC(something), VD, AD about a year ago. I had Brain Trauma and was searching for the reason I was having difficulty remembering a variety of things. I wasn't thrilled to know I had TBI, but hoping there weren't any additional problems. Getting to the VD & AD diagnoses took a couple of years. Feeling there was nothing that I could do to help myself was very depressing. I have a wonderful Neuro team. I am now taking Namenda & have started Leqembi Infusions. I'm determined to eat mostly healthy foods, & to exercise. Those actions have helped me tremendously. I am doing something to help myself! I can forget the name of a location (I did during a conversation on Sunday) & then it suddenly popped into my brain! Some little things like that are so uplifting. I am choosing to be positive & continue to look for information about DV & AD that can help me. I don't want to lose any precious moments with my husband or grandson or dogs. Or my music or reading or sewing. I love the kindle because it keeps track of what I have read & it will tell me who a character is in my book. I can read 3 chapters (an example) & forget someone from the 1st chapter & I can get reminded. I love the people here and am encouraged by so many.

SingingDogs