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Circles of friends and contact lists

GothicGremlin
GothicGremlin Member Posts: 1,633
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I recently received an email from one of my sister's friends who is feeling guilty about not contacting me before my sister was diagnosed with FTD and early onset Alzheimer's.

Here's a portion of her email:

I asked her to share your phone number with me but it was an odd request and she looked at me like she didn't understand. I remember talking with Barb about getting your information so we could express our concern. Anyhow, that never happened and I let it go

I think about this often and question myself as to my poor judgement on letting this slide and not pushing harder to call you.

I remembered that incident at Barb's house and felt tremendous regret that I didn't push harder to get your information.

In an early onset Alzheimer's case, it made me think about how we don't always know our loved ones closer contacts, whether they're friends or colleagues. At the beginning of Peggy's illness I didn't know most of her friends (I do now!).

Is there a non-creepy way to create contact lists for situations like what I've described? It would have been really helpful in the beginning to be able to compare notes as to what I was seeing in my sister that made no sense. Maybe others saw similar things?

It just seem like something we should think about as we get older ….

Comments

  • easy23
    easy23 Member Posts: 449
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    I think you have to wait for people to contact you. I had a family member with delusional behavior which many people picked up on. Only a couple of people reached out to say they noticed the behavior and brought it to the family's attention. You're right - it would be helpful to talk to others to see what they've noticed.

  • howhale
    howhale Member Posts: 396
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    Interesting question for sure. I am on the other side now having lost my DW last year but thinking back I realize that this disease is frightening for most people. It may influence when and how they might reach out, if they ever do. I know now that others saw unusual behaviors well before any diagnosis but never said anything. Even close family only offered their observations as questions and accepted any response. Later in my DW's progression, I did send an email to her closest friends explaining the situation. It did not generate much, especially in the way of visits. I think sending something to close family and friends just simply stating the situation, cautioning them how to respond to protect your loved one and then waiting to see what, if any, responses you get back. In our case, it was important to try to explain what they might experience and how to behave. I always stayed at hand to manage any visit. What others see on any occasional visit is but the tip of the iceberg of your life as the primary care giver so their view and experience is clouded by that view versus yours.

  • Timmyd
    Timmyd Member Posts: 425
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    edited May 17

    My DW was very social and had a large group of friends / contacts. These are my thoughts.

    There is a lot of emphasis in the medical community to catching ALZ "early". I have mixed feelings on this. We are heading to the same place regardless of when we get the diagnosis. No one need beat themselves up wishing "if we had only found this sooner…". Marginally there may be some things that go smoother with an early diagnosis. In the bigger picture, I am not sure how much of that matters.

    The people who have stayed with us through this journey were not because of any contact list or specific effort on our part. It takes a lot for someone to choose to be an active, engaged friend as you move through the various stages. The effort and attention needed to be part of the "team" has to come from their end, not ours.

Commonly Used Abbreviations


DH = Dear Husband
DW= Dear Wife, Darling Wife
LO = Loved One
ES = Early Stage
EO = Early Onset
FTD = Frontotemporal Dementia
VD = Vascular Dementia
MC = Memory Care
AL = Assisted Living
POA = Power of Attorney
Read more