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“I Am Not Alone” interview form
Caree: Terry, husband and Philomene, mother
City, State: Riga, MI
Age at diagnosis: Terry – 57, Mom – 78
Diagnosis and date of diagnosis: Terry – idiopathic pulmonary fibrosis, June 2004 and Mom – Alzheimer’s, 1997
Where do you find hope? Comfort?
Both have died. My mom was my first long term caregiver role. I did what I thought was best. At the time I didn’t have any first hand or even second hand knowledge of how to handle what was to come. I took each incident as it came. When it was time for assisted living, I made a decision that my mom hated. The only comfort I could take away was that, even though she never forgave me for moving her to “this place,” the people around her reported that she enjoyed her time and was a naturally happy person. I very seldom saw that side, but knowing it existed was my comfort.
Terry was given 5 years to live when he was told he had pulmonary fibrosis. He had to leave his job of 35 years as a processing engineer and give up farming, which was a lifetime love. Hope came in the form of a lung transplant and then a kidney transplant. Comfort is such a difficult term. I was onboard with whatever health path Terry chose. The transplant world has its own challenges. I guess when I look back I can take comfort in the fact that as Terry was losing his battles he knew that I would always be his advocate and fight for what I thought he deserved.
What is one thing about caregiving or you or others – that surprised you most?
Even though you are doing your best, the decisions you make and the way that they unfold do not always win you any popularity contests. Sometimes I wasn’t a nice person when frustration set in.
How do you take care of yourself?
My situation was different than Dave and Harriet. I’m past the caregiver state. During the time Terry was sick we went along in stages. Not too bad to worse and then days to live. The transplant was a new beginning. Then the ups and downs for the next 9 years. When I look back, I didn’t take care of myself. I lost weight and now take Xanax. I ate junk food and spent hours sitting in hospital and nursing home rooms.
What do you do when you hit bottom?
I enjoy getting in my car and just letting the road take me wherever. I explored all kinds of places in and around Cleveland. I find a short cry doesn’t hurt but it really doesn’t help.
What is the best/worst piece of advice you have ever been given?
Best: Take time for yourself. Of course , that was advice I could easily ignore.
Worst: Take care of yourself. It’s easier to just forge ahead and think that you will take care of yourself at a later date. Your priorities change and, through no fault of your own, you have things to do and decisions to make. Eating healthy and exercise take a backseat to pretty much everything else.
What is the best/worst thing you have learned about yourself?
Best: I haven’t beat myself up about the would’ve and could’ves. I’m a good person even when I’m not necessarily a nice person.
Worst: I’m passive-aggressive. Enough on that question.
What would you most like to tell someone who has become a caregiver?
No matter what you do you will question yourself. It goes with the job. You can’t change it so try not to beat yourself up when it seems like you can’t deal with the situation for one more minute.
What would you do if someone handed you 100 thousand dollars?
Probably just put it in the bank.
What would you do if someone handed you a million dollars?
I would support a community dementia patient daycare. Giving peace of mind for the caregiver even if only for a few hours.
What would you do with three extra hours a day?
At the time I was an active caregiver I would have just wanted to veg-out in front of the tv.
What do you wish you had more of?
Patience. There were times I let my emotions get the best of me and I would express those feelings in a not very nice way.
What are five easy things you do to relax or find joy?
Keep track of friends on Facebook, play with the granddaughters, go to Paradise ( it actually is a town in Michigan), take a meandering drive, veg out in front of the tv.
What is the best/worst question you have ever been asked?
Best: “Would you change anything?”
Worst: “Why were you so mean?”
What are three things someone could do to help YOU (not your LO, but you)?
Just surprise me. I will take anything you are willing to do.
When was the last time you cried?
While I was writing this.
Do you like yourself?
Most of the time. I really do try not to beat myself up about things I can’t change.
What is the hardest thing you have faced?
Making the decision to place Terry in hospice knowing it was a death sentence.
What is the one thing that no one can understand about your situation?
When you begin the process for an organ transplant, they stress that you are signing up for a new way of life and the patient has to be compliant with what it will take to live with that transplanted organ. Terry would sometimes pick and choose how to follow the rules. When I would get on his case about not doing something or doing something he should be doing, I was considered a nag or a bitch. They didn’t understand that it wasn’t just Terry that signed on to be part of the transplant world. I was expected to help him be the best farm post transplant patient out there. It is a life or death situation and he has to do whatever it takes to follow the rules. Not just in year one, but in years 7, 8 or 15.
What is it that everyone should know, but no one wants to talk about?
We all hope that we die in our sleep but that’s probably not the way it’s going to happen. If you aren’t already an organ donor, sign up and discuss with everyone around you. Some people are creeped out by the thought of becoming an organ donor. Years ago while Terry was still in the hospital after his lung transplant, our daughter and her husband were talking and she found out that he hadn’t signed up to be an organ donor. She was amazed. Here we had been waiting for the miracle of a donor for her father but her husband found it creepy to think about becoming a possible donor. After thinking about that idea for awhile, he went online and registered.
Do you have support from family? Friends? Church? Others?
I’m now willing to be someone else’s support system.
What do you miss the most?
Being alone together. That sounds odd. But we enjoyed being together doing something and being together doing nothing.
Do you have a humorous story you would like to share?
I do have a funny story about my mom who suffered dementia. Actually it’s two stories that are similar. One year for her birthday I took her for a massage. After she was finished, her eyes were sparkling and she told me that she had no idea that anything like that existed. The second time was years later and she didn’t recognize most anyone. She was put in a walk-in whirlpool tub. Once again the sparkle in her eyes and she told the aide that I was her daughter and that she never knew anything like this existed.
Anything else you would like to add?
Take care of the legal issues early and make sure someone else has access to all that information. If you change your mind about something in the future, you can make it happen. If you just sit back and do nothing thinking that you have plenty of time, you just might be wrong. Give someone your power of attorney now. Harriet and Dave are my sisters-in-law and brother-in-law and I feel their pain and can only try to be available for whatever their future holds.
List any resources that you have found helpful in your journey.