This is the story of Pam and John; she in her early 50’s and John is 62. Pam is a college professor. John taught at a local community college until diagnosed with Parkinson’s in March 2008, then Lewy Body Dementia in April.


Wednesday, July 23, 2008

Alzheimer's support group

I went to my first Alzheimer's support group today. There actually is a local Lewy Body support group, but the first meeting I went to only had three people so it wasn't a place where I could get ideas from people with more experience of local resources. The group I went to today was about 15 people, a good size, but an odd mix with as many new people and and people still coming after their loved one had died as there were people in the middle of the process.

I did find the conversation useful--much of it about strategies for how to redirect someone. No one had any leads for for me on home renovation. I do have a couple of leads I have already been given that I haven't tracked down yet, particularly that my university has a Center for Engaged Aging (sounds like a tongue twister to me).

I think today's group would be useful if I were willing to make the commitment to go every month, but a weekday afternoon isn't an easy time for me. I'm going to try an evening Alzheimer's group in the next town over, which I should be able to get to more regularly. I'm spoiled by the Yahoo LBD spouses group, which is such a wise and frank group of people who have become experts the hard way.


Spouse said...

I tried a Parkinson's group 1st --not well attended-not much help. Then found an Alzheimer's group that that usually brought in 8to 10 and did give more help, because it's the coping with the loss of thought processes that is really difficult. I've been going to a Parkinson's Plus group for the past 8 months,included are 6 to 8 Lewy Body caregivers. We converse in our specialty groups, and am learning more about the next set of problems and how to deal with them.
Our leader scours the web, and relays about an average of 3 articles every day, Most of it is over my head but some info has been extreemly helpful - such as the connection to this blog. Don't give up--you will find a group that is a right fit. I recommend going to every group you hear of that fits your time schedule then settle with what fills your need. Keep up with the yahoo group too!!
On house remodeling- Avoid stairs and level changes !!! make good handrails if you cannot avoid stairs. Make sure lighting is good at home entry all the way to the cars!!! I highly recommend a bathroom that can accomodate a wheelchair !!! even in the shower !!! Even tho it is not needed yet the space is wonderful even now. We doubled the size of our small bathroom--there are now no doors except the entry to the master bedroom. Even the shower is stepless and doorless with a built in bench seat right under the shower. Include a hand held side shower head(this even works great for bathing the dog) and lots of holding bars, and make sure the faucets are located close to the entry so the helper can control without getting wet. We also located seating just outside the shower to allow him to sit while toweling and dressing. Our contractor found a fantastic Light , Fan, Heater, unit to place on the ceiling right over the shower entry that is operated with a timer so we can stay worm as we leave the shower and dress. I also put in lots of dimmer switches on the lighting--I love the ability to change the amount of light, but he is confused by the different kind of switches. Be sure to get tall toilets, and having the vanity at kitchen counter hight allows him to lean on elbows when he gets tired. If you do a project like this, make it pretty so you will love it too!!!! It does not have to look industrial or hospital. We made a glass block bay window wall at the shower entry, and a nice display of palm tree and orchids beside the dressing seat.
Include your dreams and make it work for both of you

Pauline said...

Di, I am an architect and I specialize in handicapped accessibility codes (compliance that is...) Girl, you got it down. You just gave better instructions than many architects I know could give.

I can tell you have walked the walk.

All the things you mentioned are so important in designing a space for someone with special needs and caregivers. My own home has horribly small bathrooms, which made dealing with Daddy so very hard.

So yes if you are able to remodel or purchase a new place with these things you should. If you are unable to remodel, putting in good bright lighting that doesn't shine directly in your eyes, and grab bars in the bath are at least two things that can be done without much expense.

Rugs with rubber backing are a must!

Good job Di!