Mixed Dementia Care Partner - I am new here

gabwill07 · February 28

Good morning, I just found this resource and decided to reach out with my situation. My DH has a dementia diagnosis, not confirmed via MRI or bloodwork, but neuropsychological testing revealed "likely mixed dementia, due to vascular and alzheimer's". He has an aneurysm clip that is not MRI compatible. The neurologist says no need to do the blood test for alzheimers because treatment would be exactly the same,and certain treatments are not available without the ability to do MRI. He retired 3 years ago and that was the beginning of a sharp step down in his abilities. He isolated more and more, and in my view this really contributed to the step down. I am still working full time. He is 72 now.

A few months ago I finally connected with a resource at Center for Brain Health in Dallas, a GPS for early stage dementia, and that led me to the idea of Memory Care in a day setting. I enrolled him for 2 days a week, and started working remote 2 days a week. Also I spent time on the Alz Association website and found a program in my area, once a month at The Modern art museum in Ft Worth.

He struggles with following along with a list, planning, executive function, short term memory and his directions are completely mixed up. I try to celebrate him in any little victory, and keep trying to help him find daily purpose by staying involved with church, family and friends as best I can. Any advice on best ways to share diagnosis with friends or new acquaintances? I feel like people know something is off when we are together in social situations, but I also struggle with wanting him to not be treated differently. I feel like there is still a stigma released as soon as you say 'dementia'.

This week my DH and I visited our local senior center to play chair volleyball. He enjoyed it so much, everyone was friendly and it felt really comfortable. It almost makes me think everything would be better if I could just retire right now and go to the senior center every day with him, but we are a few years away from being able to do that. The large, looming question is how long can he wait for me to retire; ie how fast or slow will this slide go? Doctors say it's different for everyone, but the holistic components of social interactions, brain challenging games, diet, exercise, can help slow it down. I do think the Day Center has been helpful. He also takes pharmaceuticals, donepezil and memantine, which have helped. The other holistic activities require a lot of leadership on my part, and in some cases resistance from him.

In conclusion, I am trying to do my best to be the eternally optimistic coach, and praying to be a more compassionate spouse. 🙏

jgreen · February 28

Good morning, @gabwill07 and welcome. Glad you found this site.

Both my DH and I are retired, so I do not have same situation as you are experiencing. What I can offer might help:

It looks like you have already done a lot of research and have found outside groups and places that are working to keep your DH active and engaged - great work! If you haven’t already, meet with an Elder Care attorney to get all your affairs and legal paperwork in order - durable powers of attorney, healthcare surrogate, HIPPA, advanced directives, etc. Your attorney might also have information about Medicaid in your state and also what Medicaid might cover if down the road you find it best to ‘place’ your DH.

I have not yet tried “Oasis” but they are an organization that can help you learn more about options for in-home care, memory care and skilled nursing home care. Since you are still working I encourage you to look into these options. The time that your DH needs 24/7 supervision is fast approaching. Your primary role as caregiver is to keep your loved one safe. The social engagement and activities to keep the brain working are important too, but they are secondary to safety.

I started telling family first, and then close friends about DH’s Alzheimer’s. I found that most if not all already sensed something ‘off’ and were both honored and relieved that I told them. Everyone has been great in checking in on me, visiting with DH and stepping up if I need help with something I cannot do on my own.

I know others will chime in with other good information and advice. Caregiving a PWD is a marathon and not a sprint. We are all in for the long haul - difficult as it is. Hang in there!

SDianeL · March 1

Welcome. Glad you found this place but sorry for the reason. There is no way to know how a PWD will progress. There are so many factors. Some progress quickly in 3 years and others live 20 years. There is no evidence to prove that diet and exercise delay progression but it can’t hurt to try to be healthy. It sounds like you are doing a great job caring for him. Come here often for info and support. Also Read the book “The 36 Hour Day” and search online for dementia caregiving videos by Teepa Snow or Tam Cummings.

gabwill07 · March 1

https://alzconnected.org/discussion/comment/267108#Comment_267108

thank you so much, I will look into those resources!

gabwill07 · March 1

Thanks for your reply and advice

https://alzconnected.org/discussion/comment/267053#Comment_267053

thanks for your input, really appreciate it!

Timmyd · March 1

"Any advice on best ways to share diagnosis with friends or new acquaintances?

Who to tell and how was a big issue for me following DW's diagnosis. It took a while before I became comfortable talking about it. The diagnosis is not something that can stay hidden.

I eventually learned to get comfortable speaking about it. This is what really helped me.

I speak clearly with my chin up and solid eye contact. I show no hint of shame, I own the conversation. I try to project strength and confidence. The reactions I get are generally positive, but ultimately how people react to DW's condition is not of much concern to me.

So my advice it to share as needed. You can go slow at first, but eventually you will have to share more. Do not be meek,timid, or ashamed when you speak on the subject. People's reaction often is a reflection of the energy you project.

trottingalong · March 1

Kudos to you for the amount of work and research you have already put in. My husband has the same diagnosis as yours and is pretty much in the same place mentally. It took me a very long time to actually tell anyone he has dementia. I felt like I was betraying him somehow. In hindsight I think it was hard for me personally to say it out loud. I started with his family. They already have a history of Alzheimer’s so none were surprised, just sad. Then I started telling neighbors who were friends. Every single one of them said they had suspected something. Now going to any appt of any kind I tell them ahead of time he has dementia. Unlike you I am retired. You will find that the time you can leave him alone will shrink more and more, so prepare for that now because it will sneak up on you. And always take care of yourself as well.

Mixed Dementia Care Partner - I am new here

Comments

Commonly Used Abbreviations

Community Guidelines

Categories