Post by glajha from the new caregivers group

Jeanne C.

glajha She/her/hers / Ella Member Posts: 1 New

3:16PM edited 3:22PM

My husband is in the middle stages of Alzheimers. Is there one person, a doctor or someone else skilled specifically in care of Alzheimer's patients, who could help me map out daily caregiving and future caregiving? I try to use the internet for answers but it is too confusing. It would be wonderful to have one source of concise information. Our neurologist tells us there is nothing else she can do then hands us the same pamphlets that the group therapist gives me and is also on the Alz.org page. I guess I need a day by day, minute by minute guide to follow. I know I could do so much more to help him.

Jeanne C.

@glajha

Hello and welcome to the forum. Our fellow members will be glad to help.

One source of information would be amazing. To my knowledge it doesn't exist. I will gladly point you toward the best info I've found, as will others.

Read The 36 Hour Day - it's like a how to manual for caregivers.

Also useful are the handouts from Tam Cummings. (https://alzconnected.org/discussion/67584/tam-cummings-llc-handouts#latest)

And frankly, I've learned more from the people on this forum than I have from any medical professional or publication. Ask questions and read lots of posts.

trottingalong

Not everyone takes the exact same trajectory. In the beginning, and even now at times, I search for concrete answers. There aren’t any to my knowledge. All I find is generic information. This group has been my best source primarily for how and what to do as things change. And the people here understand and support each other.

LaneyG

I too have been searching for someone like that. Anyone have experience with geriatric care managers?

Jeanne C.

Taking to the top so @glajha can find it.

aconite

In addition to what has already been mentioned, I suggest looking for a group or counselor who provides one on one support to caregivers of persons with dementia. Also caregiver support groups. I've found both helpful in helping me to cope with changes in my DH's behavior and to present possible courses of action. I've also participated in a couple of studies that are focused on providing caregiver support that have helped. A common theme was to encourage self-care, to remember that you're doing the best you can at the moment, and to try to look for even the little things for which you can be grateful. And a big one for me was to try to learn patience but not be so hard on myself when I am not. Luckily I was able to find these resources virtually since I no longer leave DH alone for long periods of time.

I guess what I'm saying is that finding emotional support for myself has helped me to cope with caregiving and somewhat lessen the fear of the unknown. I'm not sure if that will be enough to carry me through as his disease progresses.

As far as a road map, I haven't found one. And in my experience, DH has symptoms from more than one of the typically described stages, but not all from any one stage. And some days/weeks are better than others.

LindaLouise

I think one of the hardest things about this journey we are all on is that we have no road map. We can guess at the beginning (When did it start?) and sadly know where it will end, but the path we will take is unknown. Will we crawl through jungles or walk on a grassy plateau? Will we encounter lions and dragons, or irritating fire ants? We can prepare like we would for any trip, lay in supplies (knowledge, resources, this group!, financial advice) but we won't know what we will actually need or use. It's like the earthquake kits I would send to school with my kids each year (we live outside of Seattle). We never knew if they would be used, but the kids had the food, drinks and comforting parent note just in case. We don't know how our LO will progress, how our own health will hold up, how our finances will survive, what additional issues we will encounter (Covid!) and how or if our support networks will work. This level of uncertainty is overwhelming - I find prayer, friends, this group, knowledge, humor and finding small joys in daily routines - like my morning cup of coffee- keep me centered, but feel that I am on a very thin edge and could slide off at any moment. However, we are all still here and supporting each other as we make our way to the end of our journey. Blessings to you all as we care for those so dear to us!