On August 13, 2013, Penn Medicine gave me the “official” diagnosis of Progressive Degenerative Impairment evolving into Alzheimer’s or an FTD. What a total kick when the doctor casually said I should get an attorney to apply for disability. “What do you mean disability?” He obviously did not know how much of a career person I was and how it would impact me when he said I would no longer be able to work. Much has happened since that day. We’ve faced many changes, decisions, tears and laughter.
When & how this started: I think I noticed minor changes as early as 2010, which I figured were stress or just general life changes. Doesn’t everyone go through periods of forgetting things? After my nephew, Andrew died in November 2011, changes became more obvious and more frequent. These I passed off as stress, depression and guilt over Andrew (“if I had only …”). By January 2012, my math ability was pathetic; I was constantly behind in everything, found it difficult to make a decision and I was having problems remembering verbal communication. I knew something was wrong and considered going for counseling.
I had to work longer hours to keep my work organize and accomplish my tasks. Multi-tasking had become impossible as I could only focus on one thing at a time – one conversation, one task, and one piece of paper. I spent over an hour speaking with a new customer and two days later, didn’t remember who she was or the conversation. This progressed to getting lost coming home from work and repeating myself – sometimes the same sentence five times. The more stressed I became the worse it got and as the symptoms progressed, I became more stressed.
After MRIs, Cat Scans, 8 weeks of psychological/neurological evaluations and many doctor appointments, the three doctors referred me to Penn Medicine for a final evaluation and to confirm their suspected diagnosis.
What we have found …
The disease I have is progressing. Although I take medication in hopes of slowing down the progression, there is no cure. At a slow, yet steady pace, we notice and deal with the changes.
What Rick Phelps recently wrote in a chat, expresses a lot of my feelings:
What it’s like now …
I have “bad days” or hours where confusion and fatigue take over. At these times, depression and frustration easily kick in as well. We are learning the signs of a “bad moment” and how to deal with them and trying to take advantage of all the good days. There are times that I must have “down time” or just a quiet retreat to let my brain rest.
There are many times when speaking and understanding what is said is challenging, causing me to have to ask people to repeat what they said. I have to work very hard to comprehend what you are saying and even harder to express what I want to say. This is especially difficult when I am with a group and trying to process more than one conversation or thought. Continuous talking/listening wears me out quickly and I just have to escape to silence for a bit.
Sometimes, I don’t remember what I am doing or why. And yet, other times, I wonder why I can’t work – I feel wonderful and “normal”. Generally, mornings are good for me. I get up between 5 and 6:00 a.m. and accomplish as much as possible. By late afternoon, my life usually becomes disrupted and I need to rely on more memory aides. This generally starts with problem-solving difficulties (i.e following a recipe, looking up a phone number, taking care of the wash from beginning to end, etc.) and may progress to difficulty with speech and comprehension.
We have found that the evil confusion gremlins become most anxious when I am away from my comfort zone. Grocery Shopping, for example, is a huge project for me. Dealing with the people, making sure I get everything on the list, use any coupons, and standing in line with a crowd of people talking, is a day’s work for me. And yet, I can put some music on and paint the shed for ten hours without getting tired. I’m still me. That has not changed, but we are learning that adjustments need to be made to keep my life productive.
I’m told that sometimes I say things that are inappropriate, and totally out of my character. I don’t recall doing this, but if I do – – please let me know. I don’t mean it.
We are constantly learning ways to modify everyday activities to compensate for the down times.
Meals are prepared in the morning as much as possible.
Reminder notes – I constantly forgot to hit “start”, thus the dishes, clothes, oven or coffee, never finish. So now they say “START” and all I have to do is remember to read the note?
My iPad has made life so much easier. Everything is on my iPad.; contacts, calendar, alarms (to feed the dogs, eat, start dinner), notebook, task list, brain teaser games, etc.. Where I go – it goes.
I participate in many chat groups trying to learn new and better ways to deal with the current symptoms and those to come.
We plan as much as possible for mornings (difficult since we were both night-owls).
When verbal communication is difficult, I don’t answer the phone.
And now this step, we try to educate our friends and family on what to expect.
Life as Usual …
We intend to live our lives to the fullest we possibly can, enjoying every minute we can with our family and friends. We want people to continue to feel like coming over and hanging out. There will be times when I have to walk away and perhaps go lay down or find a quiet place – especially when I am away from home. There will be times when I repeat myself or don’t follow a conversation.
I hope this clarifies some of the questions and concerns about my disease. Please pray for Roy and I, as we face the challenges of Dementia.