Sunday, June 14, 2020

Finding a Support Group

All diseases bring many challenges for the primary caregiver and the immediate family, but since Dementia and Alzheimer's are so devastating. Being a caregiver for a person with these diseases can be one of the biggest challenges one can go thru. 
If you are fortunate enough to have a close-knit family, that might be your saving grace. But if you find yourself doing most of the work alone.
Or worst in a constant battle with family members that continuously offer unsolicited advice, and are always ready to second guess your choices and hand out harsh criticism. But refrain from stepping up and helping out, and are just there to cause constant unnecessary chaos, that, of course, is not needed or wanted. Then you not only need a support group. You need to stand your ground and put some boundaries down. 

I had the fantastic opportunity to facilitate a Support Group for four years. It was and still is a  dynamic group of people from very different backgrounds, with one commonality, they are all on the same path
with this disease, Dementia, and Alzheimer's. This particular SPG was very special, not only did they understood exactly what everybody was going thru, the challenges, the heartaches, and every emotion attached to these diseases. They were there also to celebrate small victories, who would they call if they were having a challenging time with their loved one? no, they wouldn't call a family member. they would call one of their friends from SPG (Support Group) because they could relate, and help find a solution to the issue at hand. 

When you are a caregiver you need that TLC  for you to keep your sanity, like I said before, nobody will truly comprehend the many challenges that one has to deal with, all of the challenges that come with this diseases. I recall an episode with a lady that was visiting SPG for the second time. On her first visit, she shared very little about her and her situation with her husband. On this the second visit, I guess she felt comfortable enough that, when it was her turn to speak, she said; "I feel cheated, I feel very disappointed and let down. Our golden years were not supposed to be like this, not like this! We had all these plans for our retirement. I have been robbed of that. I want to know why?" needless to say that there wasn't a dry eye in the room. Almost everybody there could relate to those feelings of being cheated. 

There are a lot of stories in my memory bank. The other one that really stuck with me was of this lady, we will call her "Betty" in her late sixties,  had met and married her beloved "hon"  three years before. within a year of their marriage, he had been diagnosed with dementia and had developed aphasia ( loss of the ability to speak ) at first glance when you saw them together you didn't notice anything wrong with him. It was when you looked into his eyes and paid attention, that you knew that something wasn't right. They looked very nice together, both beautiful people and well put together, Betty was a flirty Hispanic lady with a zest for life. She found emotional shelter in the support group and as she said it "Finally! somebody who understands what I'm going thru". Like many in the group, she forged friendships with some of the other ladies and they would socialize outside of the group. As a caregiver the need for "me time" is essential.

There are many stories that this support group has seen and heard. It is still around, because of covid19 they had to make some changes as all of us have, zoom meetings are a part of the schedule every Wednesday. 

I do realize that a Support group is not for everyone. It takes a lot of courage to share your story with complete strangers, to be vulnerable, especially when this disease is so emotionally intertwined. I understand that, but give it a chance! it might be the best thing that you could do to keep you emotionally balanced.

It's a bumpy road we need to-
Be prepared, Be Informed, Be Empowered.

I send you lots of positive virtual energy.
Please send any comments that you may have
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