If my son had been run down by a vehicle, I would probably have spoken openly about it, confident of obtaining sympathy as well as empathy. But, psychosis defies empathy. Only those who have experienced mental illness close up, buy the idea that it is a behavioral disease. My son was deeply affected by the medications he took, which made him walk stiffly. Although I hated the expression, the hospital staff called it ‘a Parkinsonian shuffle.’ Much later, we learned that it was a side effect of the haloperidol medications, inducing indifference and to stop sequential thoughts. My son experienced intellectual paralysis. When he once tried to explain how he was feeling, he once asked; ‘Do you see and hear the swarm of helicopters hovering overhead?’ ‘Yes,’ we answered. ‘Well, that’s the kind of noise I hear in my head sometimes and it stops me from listening, hearing, thinking!’ Our family loved playing scrabble but he told us that he could barely build a three-lettered word any longer. I looked at my son with his tangled mass of hair – lying sprawled on his bed, and I hugged him saying; ‘I love you’ tears streaming down my face.
The other day a good friend told me; “Get yourself together, Jill. You have holes in your head.’ This was after I double-dated without thinking straight and had to put her off twice even though I love getting together with her. Well, her comments were in place and got me thinking and for that I am grateful to her. One can only say what she said to a good friend.
As I get older, I do tend to forget things, but lately, I have been on overload; nobody’s fault except my own, of course. I simply do not know how to say no and never know when it is enough! I am more of a doer than a thinker and as a result, I have joined a philosophy class where I am gleaning a ton of information and will hopefully learn to use my head more than my heart. The problem is how to internalize the material learned of course, but I have not done too badly to date although I know that I still have a long way to go.
It’s harder for me to remember things now than it was in my youth. I sometimes feel disoriented when driving at night so pull out my waze (my smartphone app, my GPS) and it always takes me faithfully in the right direction. There have been times when I have had to run through the whole alphabet in order to remember a word and forget where I have put my keys. To sum up, I think that doing these things can be described as normal age forgetfulness.
Then I remember how many things I manage to achieve in one day. I post a daily blog, check my mails and reply to them all. I write more blogs later in the day which I post as drafts for future use, as well as work on my other writing projects. I do voluntary work in the mental health field, help my daughter by babysitting for my three lovely grandchildren as well as my grand-dog. I work in my garden which produces new weeds as soon as I pull out the existing ones, plant and prune, attend Latin American Dancing classes twice a week for just under an hour each time, attend a practical philosophy course once a week, as well as a crossword puzzle group where we sharpen our thinking skills by seeing who does the tasks provided fastest. I love being part of the audience at philharmonic concerts and listen to opera as well as find time for friends and go on the odd organized tour.
Because my husband suffered from Alzheimer’s disease, I think it’s natural for me to ask myself; ‘could the fact that I forget arrangements in spite of having them written in my diary, be the beginning of this disease?’ Could mislaying my phone or my keys be other signs? But, if I had Alzheimer’s, I would probably not know what the keys were for and would probably not know how to use either the keys or the phone.
But, if I notice any of the following, that affect my daily life, I will talk to my doctor.
- Forget events that happened recently.
- Find it hard to do daily tasks like cooking or laundry.
- Often have difficulty forming sentences and/or remembering words .
- Start feeling disoriented on a regular basis.
- Misplace things and then discover them in strange places where they don’t belong.
- If my family tells me that my behavior has changed.
- If my moods change more quickly than they used to.
- If my personality changes – like feeling withdrawn, suspicious, fearful or confused.
- If I stop doing the things I used to enjoy.
Families need to be informed of the diagnosis right away and they should be given information on where to find the appropriate, ongoing care. I felt that it was important for my husband to continue doing productive work for as long as possible. But, on the other hand, he was still working as an accountant and I did not want his good name smeared because of an error he might make. It took me a long time to persuade him to retire. His symptoms were not obvious to most people then. Even the geriatric neurologist was unable to make a diagnosis
I insisted that my husband be treated as an adult and not like a child in the kindergarten. Later, when he attended a day center, I discovered that many caregivers tended to talk down to him, which I found insulting. I tried to take my late husband’s expressed feelings very seriously. I wanted him to enjoy meaningful activities to fill each day and at first he continued to play chess … later, he dropped that and continued to play bridge. It amazed me and his bridge friends that he played until a few days before he died of a stroke. Maybe because he was a chartered accountant by profession, holding numbers in his head was his strong point. More than anything, my late husband loved the outdoors and spent as much time enjoying nature as he possibly could. He walked a lot and spent a great deal of time in the park not far from our home. When I was with him, he spoke a bit, always showing me the half full cup. I have to admit that it was difficult for me to share his optimism at that stage.
Physical contact like hugging, caressing and hand-holding remained an important part of our lives. I wanted him to know that at all times that he was still loved, despite the terrible disease that was tearing his very bright mind apart. My children and I noticed that he still liked to be with people even though he spoke less and less. It was amazing how my husband managed to maintain his sense of humor.
He had been a stamp collector since childhood so continued to take out an album and enjoy paging through it. Sometimes he spread stamps from an envelope onto his desk to ‘sort them out.’ At first he moved the stamps from one place to another but slowly I think he forgot about the contents of his study. He was always polite to friends who visited but I doubt whether he remembered their names or even who they were.
And every evening after supper, I played music from the 50’s and 60’s and invited him to dance with me. There were times when he sat down as the music started instead of taking me in his arms. I realized that he needed prompting. And then, we shuffled around the floor. It was dancing of sorts, but we enjoyed the music and most important of all, we enjoyed the closeness.
I simply didn’t know how to deal with the situation. My husband was ordering goods by phone, large items that we most definitely did not need. When they arrived on our doorstep, I showed him that his name was on the outside of each parcel but he had no recollection of their purchase, insisting that they had been delivered in error. A new computer arrived, a heating device that we did not need as we had central heating. Then a computer chair, two really ugly bedside lamps as well as a standing lamp for our living area were delivered to our home. I called the various companies to ask whether I could return them and explained my husband’s condition. The voice on the other end of the line said; “IF you husband is suffering from Alzheimer’s, why does he still hold a credit card?” How right they were, but how could I take it away from him without hurting his feelings? After all, he’d been the main breadwinner in the family. I knew that I should get him to close his bank account as well.
While I was agonizing about how to go about this, more goods arrived – an assortment of towels that did not match our color scheme, bed linen and scatter rugs. Once again my husband insisted that he had not ordered a single item. I pointed out his name printed on each package in large, clear letters. When I added up the amount owing and showed him how much he had spent, he agreed to accompany me to the bank the following morning to close his account, and handed me his credit card, which I immediately cancelled.
When we reached the bank he had no recollection of our discussion the previous evening so I explained it all over again. The banker helped me persuade him to close his account.
Two days later, I received a call from the bank. “Please come as soon as you can.” I did, and was told that my husband had told them he’d lost his credit card and wanted a new one. He also wanted to open a new bank account. I suggested that she do nothing about either of his requests as he would soon forget about it. He did. She did tell me that my request was an unusual one. My reply: “Alzheimer’s Disease is an unusual illness, and you are aware of my husband’s situation. I had remembered to bring a copy of a letter the geriatric doctor had written describing my husband’s illness.”
My husband had always taken care of me, worried about my welfare and handled our financial affairs efficiently. Then, due to illness, our roles changed and it was a strange, upsetting feeling to suddenly be the decision maker. Fortunately, our daughters and sons-in-law stepped in to help whenever and wherever they could.