Summer, 2009:
Caregiving 101: Why can't I do this alone?

In my work as program director, meeting with potential clients' family members, I am constantly seeing people who sincerely believe that they are the only people who can take care of their loved one with Alzheimer's Disease. Sometimes this stems from the old sense of duty that, if you took somebody for better or worse, then you'd better live up to the bargain! However, taking somebody for better or worse, at the expense of your health doesn't do that spouse any good, once you're put into the hospital with your own serious medical diagnosis. The better translation would be: to seek some respite help throughout the week, so that your spouse CAN benefit from being with you as long as you remain fresh and in a good frame of mind.

Here are a few other thoughts to ponder before giving the thumbs down to any form of assistance in caring for your loved one.

1. Your loved one does enjoy being with you, but certainly longs for the company of others. Self esteem is very important to the person with Alzheimer's and he/she should not be deprived of the chance to make friends with others. Friendships build self esteem.
2. Being one-on-one with anybody, I don't care if they have AD or not, can be very tedious. It's impossible to keep up a steady level of activity with your loved one, without becoming burnt-out. Even people who work in day centers take turns, in order to remain refreshed!
3. Sitting in front of the TV, all day, does not do anything for the person with AD. Often it may contribute to delusional thinking and hallucinating. You may think your friend is nice and comfy sitting in their favorite chair all day, but instead the mind is turning into mush! Stimulation is the key to effective management of the illness, but a connection must be made; something a TV cannot do!
4. Too much frenetic stimulation is not good either. People with AD do not generally enjoy "hopping" from shop to shop, especially in malls which are crowded, disorienting and noisy (and with unforeseen safety risks as well).Too many "road trips" in the day will only cause your loved one more wanderlust when he has to remain in the home. And men who cannot drive anymore can possibly become more agitated in cars as they feel the pain of not being able to drive anymore. The to and fro trip to the Center is really adequate road stimulation and the ride home often occurs during "sundowning" time which is ideally satisfied by a little road trip. (somehow the movement of the van is a substitute for the wandering and rummaging behavior associated with sundowning).
5. Everybody needs a little time away from each other. Caregivers need to be among people with whom they can "vent" problems, laugh or cry ; especially out of earshot of the loved one with the illness. Your own group of friends supplies a different, needed dimension to your lives; your identity is not only that of caregiver! The time away from your loved one can energize you to keep going! It is no crime to give up some of the caregiving duties for your loved one. Even 35 hours (5 days a week of daycare) only 20% of the hours in a full week. And we all know how people with AD can be up at night due to sleep disturbances. Caregivers owe it to themselves, their families, their loved one and the community at large to take some time off from the duty of caregiving. If you fall, then so do the rest of the "house of cards" and your family will be stuck with having to expedite the search for care, without your approval.

What about the QUALITY of care that your loved one gets elsewhere? Don't worry, you'll know right away when you meet, interview and observe health professionals; it's a gut instinct! And you may be surprised! It's not at all uncommon for those of us who do daycare, to fall in love with your loved one too!

My Mother, The Poet

Did you know that the members of the Abigail Adams Club are talented artists? Well, the other day, Priscilla Poli, one of our activities professionals came out with the following "group poem", which we think is quite spiffy. You be the judge:

Fun at Abby's
The happy faces, from many places
Fun times and lots of joy,
A cup of coffee, spot of tea,
Then songs of Dale and Roy

Next we form a ring,
and talk of many things,
News and tales of common folks
Hangman, trivia, riddles and jokes

Sometimes we pledge the flag,
Followed by "stretch and tone"
But our very favorite thing
Is Hangman til' the staff all groan!

"I'm hungry" says Marge at eleven,
Then, cookies baked in (Gloria's) heaven!
We've only one hour to go
Until they put on the lunchtime show.

It could be Maria's meatloaf
Perhaps it's Mac and Cheese
Made by John and Mimi
It surely aims to please!

The creative juices flow
When specialists come and go
Dwayne or Richie on guitar
But Bingo-with-Ray is our shining star!

The sight of Nicole or Joe
Signals its time to go
We long for home and cannot stay
Don't worry, tomorrow's another day!

What's Cooking At The Abby Club?

The answer to that question is: hamburgers, watermelon, s'mores, strawberry shortcake and other warm weather treats! You see, at the club, we really enjoy the seasons, and love to embrace the foods of the season! (though it can be messy). For the coming month, we have two field trips in the planning stage, both to take place in August. The first be on August 3rd, a Monday, and that will be an ice cream field trip to either Duxbury or Kingston. (I am still researching the pros and cons of two separate places-maybe we can do one in August and the other in September). The cost of that will be $5.00. The second field trip will be a picnic lunch that we prepare and take to the bandstand in Hull. In that way we can be "on the water" but still safe and free from twisted ankles! This will be planned later in August; probably for a Friday.

I would be very interested in knowing if anybody knows of a daytime theatre venue that we could take our clients to. It seems as though most theatre happens at night, but often there are dress-rehearsals that occur in the day. Heaven knows our Abby Clubbers are a wonderful audience... ask our musician friends like Dwayne Sullivan, Richie Berns or Susan Dolabany! They always comment on how wonderful our group is! So if anyone knows of a theatre troupe out there, let us know how to reach them.

I am also wondering how we will "pull off" the second annual Abby Club yard sale! Last year Priscilla, Marge's daughter; Priscilla's friend, Barbara and Lucia, our activities person at that time really did the yeomen's work in terms of set-up. Therefore, this year we are requesting more volunteers. I think this sale will have to occur at the end of September around Columbus Day! Please see Julie or any staff member regarding your interest.

Lastly, I would like to thank the family of Virginia Desler, for naming us as the recipient of memorial donations in memory of our sweet Virginia. Virginia passed away in June quite suddenly of a stroke and the Center is much quieter these days! Virginia was playful and the picture of youth (even at 93!) and delighted in talking about her childhood in Roslindale; always vividly describing some the event of her life ("My father who was a barber would give free haircuts to the men who didn't have much money, so as to uplift them and make them feel more confident".) I drove Virginia many, many times in my car to the center and was privy to these wonderful, colorful stories of old Boston. Virginia was all about family, as were her children, particularly Karen and Chris who really stayed by her side; two pillars of steadfastness and love! Karen, who lived were her Mom would always send Virginia in looking polished and beautiful; as was Virginia's way-of-being. I am always so impressed by families who go the extra mile to keep their loved one in the style of dress to which they are accustomed! And speaking of going the extra mile(s), Christopher Desler, Virginia's son who lives in New York, could be seen as much at the Center as though his house was ten minutes away! He would come for frequent visits, in order to give Karen respite, and shower Virginia with love and attention. Virginia would speak, often tearfully, of "how good my children are to me". I will never, ever hear the song "Oh, You Beautiful Doll" without thinking of charming Virginia soft-shoe shuffling for her Abby Club pals. Now she can waltz endlessly on the heavenly dance floor, with her favorite partner (and husband) George!

The Center also mourns the passing of dear, sweet Chrissy; Christopher Pongratz, whom we were just getting to know and of Lucia's darling, wonderful father, Al Pearson who was also with us for a short time but left a lasting impression with his gentlemanly, caring presence, as he befriended so many of our Abby Club members!

Please remember their families in your prayers.

On Abby's wishlist: Ginger Ale (regular and diet), Crystal Lite, cookies and volunteers to come and help at the club for an hour per week or a whole day!