City, State: Newport, NC
Age at diagnosis: 66
Diagnosis and date of diagnosis: FTD, not sure about the date
Where do you find hope? Comfort?
When I let myself, I find hope in Christ and through the sharing with other caregivers. I am comforted by friends who make it clear they are aware of me and who always want to know how I am doing.
What is one thing about caregiving or you or others – that surprised you most?
The complete and total life changing impact that happens to all caregivers.
How do you take care of yourself?
Haphazardly. I go to AA when I can go. I attend church and have a great church family, I go out to eat breakfast with girlfriends. I watch funny videos on you tube and old comedy shows. The best and favorite thing I do is hangout with my 12 year old grandson. Pure bliss!
What do you do when you hit bottom?
I isolate. I imagine all sorts of wrongs that have been done to me and how I may be doing this caregiving the rest of my life. I am exhausted yet stay up late. I simply become a very distraught, miserable human being. l relish in being miserable and often get pretty far down before I am so miserable that I start seeking for someone to talk to and dump it all out. I begin feeling better immediately. I don’t drink or drug or have an affair. I use to do that long before FTD reared its’ ugly head.
What is the best/worst piece of advice you have ever been given?
Best: To let Robert have quality of life rather than quantity of life. This has kept me from nagging at him to stop this or start that, to relax and let him have pretty much what he wants.
Worst: That I should put him in a nursing home so I could have a life. This was said to me unbelievably early in the process.
What is the best/worst thing you have learned about yourself?
Best: I have and am learning that I am capable of great acts of love and self-sacrifice. I can hit bottom but I always look for a way back up. I can handle pee and poop with the best of them now.
Worst: I can be a miserable witch of a woman, full of self-pity and fear. During these times I am all I think about and I resent the responsibility of caregiving.
What would you most like to tell someone who has become a caregiver?
Become a part of a support group of caregivers. This is by far the best thing I have done. I have been accepted, not judged, learned about the challenges of others and gotten many, many helpful suggestions that I would not have found on my own. There will be days when the sorrow and emotional pain will feel as if it will kill you. Educate yourself. Advocate with passion rather than out of anger. The people you fully believe will be there for you probably won’t be and people you never dreamed would be there for you are often angels. Hang out with a child and have some fun from time to time.
What would you do if someone handed you 100 thousand dollars?
Pay off our debt. Help a friend who I know is in dire straits. Pay for respite time for other caregivers. Get that next tattoo I am wanting.
What would you do if someone handed you a million dollars?
Pay off all my family’s debts. Ask a responsible financial manager to invest a portion for us. Help others to get a bit of a break.
What would you do with three extra hours a day?
Listen to see if Robert needs anything. Watch t.v. Write. Same thing I do each day now.
What do you wish you had more of?
What are five easy things you do to relax or find joy?
Watch old comedy t.v. shows, hang out with my grandson, play with one of our cats, have breakfast or lunch, sit on the deck and listen to the birds and the sound of the children running round the park.
What is the best/worst question you have ever been asked?
Best: “What can I do to help?”
Worst: “Why don’t you place Robert in a nursing home?”
What are three things someone could do to help YOU (not your LO, but you)?
Cuddle with me (non-sexually). Mow my yard this summer. Listen.
When was the last time you cried?
Really cried? I don’t remember.
Do you like yourself?
What is the hardest thing you have faced?
Robert knowing what is happening to him without any way for him to change it.
What is the one thing that no one can understand about your situation?
How I have let the house and yard get in such a mess.
What is it that everyone should know, but no one wants to talk about?
That I am willing to do this for the rest of my life.
Do you have support from family? Friends? Church? Others?
Family, some friends, church and AA – a lot of support. Online chats are a huge support.
What do you miss the most?
Being able to travel.
Do you have a humorous story you would like to share?
Probably about a million, but none that I can think of at the moment.
Anything else you would like to add?
This is the most difficult thing I could ever imagine doing and yet it is the most rewarding, life-changing choice I have made and it has brought me so close to God
List any resources that you have found helpful in your journey.
AFTD ( Association for FrontoTemporal Dementia), many discussions, talks, classes on YouTube, The FTD Spouse chat group on Facebook, The Bible, Robert’s primary care physician