Caree: Mary, wife
City, State: Stoneham, MA
Age at diagnosis: 66
Diagnosis and date of diagnosis: Frontotemporal dementia, April 2015
Where do you find hope? Comfort?
I wouldn’t say hope because I realize where this will end. Comfort comes from my family, friends, and the two days in day care that she attends. She is physically healthy and still mobile.
What is one thing about caregiving or you or others – that surprised you most?
I found (the hard way) that you never know what is going to happen tomorrow. I’m always living in the moment with no plans for the future. I wake up every morning not knowing what to expect and that has kept me focused and always alert. I realized that I can never let my guard down, for the minute that you do – something goes wrong.
How do you take care of yourself?
We still go out to dinner with family and friends. When she is in day care I do things for myself. I have semi-annual checkups and try to eat healthy. When she goes to bed around 9 pm I relax with a glass or two of wine and just veg in front of the TV. Fortunately, she sleeps through the night and doesn’t wander from the house so I am able to run quick errands.
What do you do when you hit bottom?
This may sound cold, but the one thing that I did years ago was to say goodbye to the woman I married 47 years ago. I found that if I kept the emotional strings attached, I was a wreck. Everyday I remember my vow of “in sickness and in health.” These two reasons allow me to do my job without feeling sorry for myself.
What is the best/worst piece of advice you have ever been given?
Best: If you are about to get angry, stop a moment and say, “Do you want to be happy or do you want to be right?” After a while I realized things that were making me angry were affecting my ability to do my job. Being happy is good and the things that are making you angry are actually very insignificant in the realm of the disease.
Also find a support group for FTD. It saved my life. Talking to other caregivers is very therapeutic.
Worst: Hard to say. It’s been so long since the signs started showing (about nine years). I can’t remember anyone giving me bad advice.
What is the best/worst thing you have learned about yourself?
Best: I realized how strong I am and capable of handling this now. It has taken me years to build up the confidence to handle anything that comes my way. Every time I adapt to a change successfully, it makes me more confident for the future.
Worst: I still get envious of my friends lives when they go on vacation, or when I can’t stay out late, or have a normal conversation (or any conversation.)
What would you most like to tell someone who has become a caregiver?
- Get into a support group.
- Get an Elder Law attorney to get things out of the patient’s name and get a Health Care Proxy and Durable Power of Attorney.
- Realize early on that if you took all of your problems and threw them in a circle with everyone else’s problems, after looking at what was in the circle, you would probably take yours back.
What would you do if someone handed you 100 thousand dollars?
Donate some to research, pay some bills, find families that can use it more than me.
What would you do if someone handed you a million dollars?
Still donate to research, still pay off bills, still find people that are in need, find someone to watch my wife and take quick, short vacations.
What would you do with three extra hours a day?
I honestly don’t know, but one thing I would do is go to a movie theater to see a movie on the big screen. 🙂
What do you wish you had more of?
What are five easy things you do to relax or find joy?
Read, clean around the house (it’s true), talk with my close female friends, watch TV, and have my wine at night when she is safely in bed.
What is the best/worst question you have ever been asked?
Best: “How do you do what you do and still stay positive?”
Worst: “Don’t you wish they had a cure for this???” or “Don’t you regret that you didn’t travel more before she got sick???”
What are three things someone could do to help YOU (not your LO, but you)?
- Offer to take her out and not have to pay someone.
- Stop by anytime time to see how I’m doing.
- Talk to me about anything other than my wife.
When was the last time you cried?
Yesterday – 4/28/19
Do you like yourself?
Yes. I feel good about being a good caregiver. I’m also a Professional Guardian/Conservator for 17 other people (all appointments were through the Probate Courts in and around Boston. I stopped taking need cases when my wife was diagnosed.
What is the hardest thing you have faced?
The reality that this disease is terminal but there is no time limit on how long a person can live with it.
What is the one thing that no one can understand about your situation?
The loneliness and utter silence.
What is it that everyone should know, but no one wants to talk about?
That your loved one will probably precede you to the grave.
Do you have support from family? Friends? Church? Others?
Family – yes, Friends – yes (for the most part), Neighbors – yes, FTD support group – yes
What do you miss the most?
The freedom to make plans any time, the traveling, the hours of conversation in the living room (by the fire with a glass of wine), the intimacy, her laugh, her smile, just about everything that was her!!!!!
Do you have a humorous story you would like to share?
We were out to dinner one night with another couple. I have her wine watered down which she doesn’t realize. Her glass was empty and before I could stop her, she reached over to the table next to us, grabbed their bottle of wine and filled her glass. After explaining, we all had a good laugh and I paid for their wine.
Anything else you would like to add?
Not at this time.
List any resources that you have found helpful in your journey.
FTD support group run by Massachusetts General Hospital.