Dealing with the Alzheimer’s diagnosis is always challenging. Although we were “glad” to have the diagnosis because it meant that Jim and I weren’t “nuts” noticing all the changes that Jim was going through, the diagnosis certainly singled us out. Being a person with early-onset or the caregiver of one brought with it special circumstances that made me feel like “the odd man out”.
- When I was with people and they were discussing their future and dreams that they have or things that they wanted to accomplish, I couldn’t partake in that dreaming because I knew my future would be filled with dementia caregiving. That part of my life and my future had been turned upside down. I would sit there silently and not add to the conversation….not wanting to say what I was feeling at the time and put a damper on the conversation, not wanting to share my thoughts that I don’t have that type of future…..
- Early onset Alzheimer’s means that you have been diagnosed before age 65. That diagnosis usually means that you will not be able to work as long as you intended to add money to your nest egg for retirement. Not only do you have to worry how your course in the disease will affect you; will you go fast or slow; how will it affect your spouse? Early onset people don’t have the working years to amass a decent amount of money to carry them through their retirement years. That is a big deal! Most people with dementia will require nursing home care in their final years. You have to pay for that on top of everything else! The financial worry is as troublesome as the health aspect. To top it all off…..your spouse won’t be able to work as long either, because there will come a time when they have to quit to care for the person with the disease.
- If the person with dementia hasn’t quit already, they will have to when the disease impairs their working ability. They should divulge their diagnosis to their superiors. Many times this will end their career. Jim was lucky in that his superiors worked with him his last two years. They gave him accommodations to help him do his job (family therapist): they allowed him to go home for lunch and take a short nap to refresh his brain, they reduced his client load, they allowed him to tape his client sessions so he would have a record that he could go over after the sessions (a memory aid), and they obtained a dictation program for his computer so he could speak and the computer would type what he said (unfortunately he couldn’t learn the nuances of the program in order to use it). This support allowed Jim to be able to work until age 55, the age at which he was eligible for some retirement. These were big things his company did for him! They were way ahead of other places of employment. Most employers would want him to quit immediately. BOCES 1 knew Jim could do family therapy “in his sleep” practically. He just couldn’t always remember the fine points of what happened in each session. The taping of the sessions allowed Jim to go back over the tape before the next session, so that he was current. They allowed him the luxury of retiring at the end of a good career, on a good note, rather than a sour one. He was competent when he retired. That saved his self esteem!
- Because the person with dementia has had to quit while their spouse is probably young enough to still be a part of the work force, hopefully their spouse has a job in which their superiors are somewhat flexible/forgiving in their approach to the employee who would need time off for doctor’s appointments, and odd circumstances where time off is needed without warning.
- I was a microbiologist for a local hospital when Jim retired early. My job was flexible enough that in an emergency I could go home and address the situation that arose, and then come back to work and stay until my work was done and I made up my hours. They also allowed me to go part-time when I needed to so I could be home with Jim more as the years went by. You might wonder what kinds of things took me away from my job without warning. The recreation center called me once because a resident of the community was missing their sweat shirt that happened to have their car keys in the pocket. I had to go home and check what sweat shirt Jim wore home. Sure enough he had on a sweat shirt that wasn’t his (but was the same color as his) and it had the keys in the pocket. Another time Jim was bike riding and got lost trying to go to the Alzheimer’s Association. He ended up at our local community college and the security person there held Jim until I could pick him up. I took him home, and went back to work to finish up, then went back over to the community college to look for Jim’s bike so I could bring that home.
- What about the person diagnosed with early onset who has no spouse? Who will take care of them, how will they pay for care? All of these things spiral a person with early onset into a conundrum of worry.
All these things have a big impact on the person diagnosed with early onset as well as their spouse or caregiver. These are things that the person diagnosed with dementia after 65 doesn’t really have to deal with because they are probably already retired and they are hopefully on better financial footing.