September 1996

Sept. 6/96
Arranged for a trusted family friend to see Dad today to talk to him about renting the house so that Dad feels this is a decision by consensus as opposed to one daughter arbitrarily deciding to take action. The visit went well; we are having a group meeting next Tuesday to discuss the matter.... and make it a reality (hopefully) for Dad.

Sept. 7/96
After some time off, saw Dad today. He was visibly tired and very upset, as he had had an "accident" just before I arrived; the aid was cleaning up. It is so hard to see his embarrassment..he is devastated by his loss of bowel/bladder control. I downplay it of course and try to blame it on something he ate (actually quite probable). He could hardly speak today; there can be such a difference from day to day and no explaining it.

As hard as it is to watch my father, I do derive satisfaction from my visits to the home because I make a difference to others living there, as well as my father. I seem to have become an adopted daughter to Rhoda who has had a stroke but is still a gifted artist; she is painting my picture from a photo. As I walk around, I often help residents with little things...compliment ladies on how they look...it makes them happy as it certainly does me.

Sept. 8/96
I don't telephone Dad very often which doesn't make me feel great. When he came home from the hospital two years ago after his hip operation (a success) and rehab from a stroke (caused by his anger), I'd get calls at all hours...constant complaints about everything...the housekeeper, being kept in a prison, food...he was at war with everything and I was caught in the middle. He would demand that I come over right away and do whatever he had in mind. The telephone became an instrument of torture for me... nothing new to many caregivers....I'd end up crying or screaming at the phone in absolute frustration and anger...to the point where I had to turn it off if I wanted to get a decent night's sleep. I called Dad last night but it's virtually impossible to understand him; he continues to beg me for help...but to do what...?

Sept. 10/96
Went to see Dr. Norton today to update him on Dad; asked him if there was anything else I could do re the plans for the house and getting Dad's support. I asked him about the dementia and what I could expect...in fact, I really couldn't see much difference between Dad's vascular dementia and Alzheimer's. Apparently those with Alzheimer's decline steadily, whereas Dad is declining in stages; he'll be the same, then decline a little and stay that way for a while, then decline again. I asked him if Dad would ever get to the point where he wouldn't recognize me...he said there is a strong possibility this could happen. I hope things don't go on long enough so they reach this point...I don't think I could bear it.

Saw Dad tonight; had the meeting with Don and Dad and will proceed on the house rental. We went out for coffee; fortunately there is a great coffee place within wheelchair pushing distance and one of the few pleasures Dad seems to have is going out for coffee. He admitted he was confused as hell, which he was; he really didn't know where he was...so perplexed, almost mystified. He stared and stared at me, as if willing me to supply the answers he couldn't find. I would give anything to be able to do so.

Sept.16/96
Saw Dad today and found him brighter and more lucid than I have seen him in a few months. We went for the usual outing...a walk and coffee..but since he has no short term memory it's all new to him. We talk about the weather, his jacket, his health (if he's looking well), and I maintain a constant commentary about the houses that I push him past in the wheelchair. As I learned in my support group, I constantly question him or comment about the past to take advantage of what long-term memory he has, although it is definitely diminishing. I'm always saying..."remember when you did this or went there..." I also talk to him about my business life...Caregiver Network and computers and the Internet. I don't know what he gets out of all this but I keep trying....because I think it's important that he feel conected to life and to me...it brings a smile or a moment of remembrance...worth any effort on my part.

I am amazed at what the other retirement home residents notice. When I visited Dad a few Saturdays ago, I received comments from Celia, who praised me for trying to help my Father remember things past. Today Shirley stopped me as I was passing to tell me saw me the day we brought Dad to the home and that she knows when I visit and how I treat my Father...you can't put anything over on anyone, even if you wanted to! So I try to talk to all residents who I encounter, if even for a moment. They deserve our time.

Sept. 17/96
I got home yesterday after spending half the day with Dad thinking...I didn't get anything done. I have felt this countless times before and I think I've arrived at an understanding with myself that spending time with my father is part of my "job" at this time in my life, that it's justified and "OK", no matter what the time of day or night. I invariably feel exhautsed emotionally after seeing my father and am working on telling myself that I should feel just as rewarded after hours with my Dad as after "a good days work". Does this make sense?

Sept. 22/96
A wet, rainy Sunday in Toronto..the one day I promised Dad I'd take him to church! But we forged ahead anyway...it's very difficult getting him in and out of a car with only one person but we managed and didn't get too wet. It was worth all the effort. Dad was delighted to be there...I guided him through the service, he insisted on standing when he could and we both enjoyed the baptism of three babies. After the service I wheeled Dad down to the door to greet the Minister. Dad shook his hand and told the Minister quite clearly that he had enjoyed the service and that he had been married in the church (Timothy Eaton Memorial). Both of them had grins on their faces after this, as I did. I can't remember the last time I went to church with my Father...now I have a memory. In fact, I'm going to arrange a wheelchair cab for him once a month so he can go to church no matter what the weather. I've also learned about a seniors' program at the church that may be a good outing for Dad as winter closes in.