Getting Support - Go through your list of friends, etc.
This advice for caregivers was written by someone whose husband has Alzheimer's Disease. I think her advice on going through your list of friends (and identifying who can do something, who can listen, and who prefers to continue on as if nothing has happened) is a useful approach for all caregivers. This is perhaps a good exercise for those diagnosed with a neurodegenerative disorder too.
SUGGESTIONS FROM A CAREGIVER - Support, Part 1
By Elizabeth (Betsy) Howe, M.B.A
Dealing with dementia in a loved one can be overwhelming at times, or most of the time. Not only do we have our own lives to conduct, we are trying to do the best we can for our loved one. All the time we are also grieving the loss we both are undergoing. You about get used to one level of effort and things change and get harder.
As caregivers we are advised to reduce stress, keep a life of our own not involved with caregiving, exercise, and eat properly. The focus of this article is reducing stress. The caregiver's key to reducing stress and keeping THEIR sanity is .... support support support ...and the most important...SUPPORT.
Many articles tell us that if we don't take care of ourselves we can, and do, become statistics ourselves. We die earlier than our non-caregiving peers, or worse yet, before the loved one we are caring for.
One of the useful things I've been advised to do is make a list of all my friends, family and acquaintances. Next to each name I indicate what role they can play in reducing my stress level through support in three categories:
1. 'D' goes next to the names of those who can be counted on to 'Do'. There are and will be things we inevitably will need done or need help doing or leaning to do ourselves.
2. 'L' goes next to the names of those who can be counted on to 'Listen.' We need people we can talk to, even if we end up saying the same things over and over. I suggest, if possible, you find one or two you can literally call 24/7.
3. 'C' goes next to the names of those who prefer to 'Continue on' as if nothing has happened. They prefer not to talk or hear about the nasty things going on in our lives and the life of our loved one. BUT they are willing to continue to be our friend. These people are essential for those times when we just want to 'get away' and pretend to be like everyone else (non-caregivers).
Think about those you know in all avenues of your life - work, professional associations, family, friends, church. Be sure to include all people you know. You might be surprised at the number of potential support people you have. Don't forget to think about those who know/ knew your loved one. Often they will be happy to support your loved one by supporting you.
Keep your list in a notebook or on your computer or electronic planner so it's easy to find and add to. If you are extremely lucky you will have one or two people who are all three- D, Land C! Just try not to 'bum out' any one person. If they can support you in more than one category, it's easy to do. You are in this for the long haul and need 'D', 'L' and 'C' support long term.
I am finding that those of us actively involved in caregiving truly CARE for each other as well as our loved one. Sometimes helping someone else is a stress relief for me! Be open to new friendships with those you meet through various support groups, such as the Lincoln Alzheimer Association Young Onset Support Group that meets twice a month and has activities periodically.
Don't forget the Alzheimer's Association 24/7 Helpline, 1-800-272-3900, or firstname.lastname@example.org
as someone to 'Listen' but also provide helpful suggestions. I prefer the phone if I have immediate issues involving my loved one and want to know how to handle something that's going on right now. They have trained personnel with whom you can speak.
Even if you have a great local counselor or psychologist with whom you are working, the local professionals aren't generally available 24/7. If you are looking for something that is not so immediate, the email address is a good bet.