Nov. 1/96
Today Debbie and I went to look at another facility and although we will add it to the list...a lovely place...I doubt Dad will ever get in.

Our meeting was set for 4:00 pm at the hospital; by my watch we arrived at 3:55. When we got onto the floor, Debbie looked up at the nursing station clock and said:"Looks like they forgot to change the clock"...it said 3:00 pm. Wrong...I had forgotten to change my watch...so we decided to go back to the house. On the way out we met our social worker who had given us the forms etc. we needed for PCS (the placement service). She was not going to be able to make the meeting; the minute she saw us, however, she hustled us into the corner and explained that the hospital had a transition floor which keeps seniors until they can be placed in an appropriate facility. Apparently this floor has all the help and therapists required by dad; he will get more specialized care than on the acute care floor where he is at present. So we had one more part of our plan for dad in place.

Everyone assembled in a meeting room on dad's floor at 4:00 pm...the doctor, his resident, a nurse and the family... five kids. I ran the meeting and opened it by asking all the health related questions we had...medication issues, equipment considerations, nursing requirements etc. I also made sure that my father would never be given any of the sedatives that almost killed him, but we had to address the agitation and violence issues, the reasons he was given the sedatives in the first place. The nurse asked if we were against physical restraints (they had already been used); we had agreed as a family that if dad had to wear a special shirt that allowed him to be restrained for his own safety, that we would prefer this to any medication. The other thing we agreed was that we would hire a companion who would stay with dad at night when I couldn't to help ease the "sundowning effect". (Some nights he gets so agitated that he does not recognize any of us and just keeps pushing us away, yelling and clawing at his clothes and sheets).

We then proposed our plan, that dad be placed on the transition floor until a place could be found for him permanently. To our amazement, they agreed immediately; we thought they would give us trouble about keeping dad in the hospital. We have our reasons for believing why they agreed to the plan...they know we know about the effect of the sedatives on dad; we suspect they also want to keep an eye on him for a while longer. Of course we asked for their prognosis for dad, but got the usual "Everyone is different...he could live for another 3-5 years or for another month. Another stroke, heart attack or just old age could strike at any time." They could not offer any new insights into his dementia...we know it will gradually get worse. The stroke and hospital expereince have undoubtedly set him back; only time will tell how far.

The past ten days have been an emotional rollercoaster...I feel drained and tired. After the meeting with the doctors, we assembled at the family home where we all sat down together for a meal for the first time in 10 years since my mother died. It was emotional to say the least...I know my father was hard on us and that each of us has a different perception of him which is now colouring how we feel; I am trying my best to accept my sisters' and brother's limitations on what they can and will do in this situation due to emotions and geography, but the one thing we did agree on (at least my sisters and I did) was that we must support each other more; that regardless of all else, we are a family with or without our father.

I know I have neglected Caregiver Network and this Web site but will hopefully be able to once again turn more of my attention to both. I have learned a lot more about "the system" and will bring this information to other caregivers through this site, our Caregiver Seminars and our new Caregiver Club newsletter. Over and out

Nov. 14/96
A lot has happened ...trying to catch up. Everyone has gone home and again I am left alone to deal with all the new issues around dad. I visit him every few days and he seems to be progressing. His eating is fine, although he is still on pureed food which does not seem to be enough for him. A week ago he was moved (for the fourth time) up to the transition floor where he will wait for a bed in a long term care facility. I have done all the paperwork and made my choices; now we wait. We have to take the first bed offered from any one of the facilities; if that is not my first choice he goes to this facility anyway, again to wait for another bed unless we feel he is best off remaining there.

Even though dad was in a retirement home before this stroke, the 'nursing home' decision is still tough. We considered trying to put him back in his own home, but he requires too much care now and the house is completely inappropriate for a wheelchair. But even though all the reasons stare me in the face, I know I'll forever do battle with htis decision. A small book was given to me by one of the nursing homes called "When Love Gets Tough" by Doug Manning (see Publications/Resources). I picked it up the other night and found it a source of comfort. He says: "Love is doing what people need - not just what they want. In spite of what she wanted or what we wanted, we decided to place her (mother-in-law) in a nursing home. A nursing home could provide what we could not. Such things as round-the-clock nurses on duty, bath facilities designed for her, social contact with people with similar interests and activities designed for people of her age and her condition would be provided for her."

I helped move him last Friday...he is in a semi-private with little space for his things. The floor has a lounge with a TV and lots of activity. I have taken him down to the cafeteria (quite lovely for a hospital) where he has enjoyed coffee and a muffin. I promised to take him to dinner there. At least on this floor he lives a less "hospital-like" life; he wears his own clothing and spends most of his time in the wheelchair...he can push himself along with his feet. They do not believe in restraints (thank God) but he also seems more settled. He has fallen a few times; they admitted they had to keep a closer eye on him...will this be done when everyone is so busy?

I got a copy of his medical evaluation; he requires heavy care and is not a candidate for rehabilitation. In spite of this, I am constantly bugging them to make sure he is seen by all the available therapists and that he does get as much physio as I can make them supply.

However, things seem destined never to run smoothly. I went to see him yesterday and he was acting strangely. He whispered to me that we shouldn't talk too loudly and that we must plan our escape...he wanted out. I had promised to take him outside for some fresh air so I thought this would take his mind off escaping. WRONG. The minute we got outside he demanded to be taken to the family home...not too far from the hospital...and when I told him we couln't do that...house locked up for the winter etc. etc. etc.; he was inconsolable. I tried to distract him but when he asked if I was taking him back and I answered yes, he began howling and wouldn't stop. How could I do this to him, how could I hate him so much when he loved me...it all came out, on and on. When we finally got back to his room, he wouldn't let me take his coat off and started to add beligerence to the mix. I went and got help, a third party to calm him down. Again, nothing worked. I was the cruelest daughter in the world....he grabbed my wrist and really gave it to me, something he has never done before. I finally couldn't take it any more and told the nurse I was leaving. My presence wasn't doing either of us any good. I called later to see how he was; he finally calmed down and they distracted him with another activity. I hope to God it was just a bad day and not behavior that I have to deal with constantly. The moves for him aren't over yet; how much more can he deal with? How much can I deal with?

Nov. 15/96
My dad's oldest living friend, Jim, had not been to see dad since he moved to the retirement home. I'm not sure why...I suspect Jim could not bear to see dad in an environment other than his own home. I had continually asked Jim to let me drive him (he is cautious about driving now). Finally he requested that he see dad; he is moving north of Toronto next week and wants to see him before leaving. So I picked him up and dropped him off. I decided not to go in with him...yesterday was still fresh in my mind.

Meanwhile I called a home care consultant/friend who told me quite bluntly that dad belongs in a chronic care hospital, not a long term care facility. I had tried to get information on these hospitals but could never get my questions answered. So the task for the coming week is to set up some tours and make some more decisions.

Picked Jim up...dad recognized him after a few minutes and held his hand before he became restless and inattentive. I was so pleased for both of them that they finally saw each other...perhaps for the last time.

Nov. 18/96
Today is the tenth anniversary of my mother's death; I shall go and see her place at the crematorium and read the inscription I had placed in the memory book opened at November 18. A sad day for me...dad will not remember and I shall not remind him.

Nov. 19/96
Went to the hospital shortly before lunch, not sure how I would find dad. He was sitting at a table with 2 others, just starting his lunch. He asked me where I was yesterday and I explained that I had to work on my computer. This was accepted and he carried on with his lunch, with my help. God bless his heart, he tries, but his right hand often cannot make it to his mouth, or if it does, the fork ends up by his ear. After lunch, I cut his nails and we started a load of washing (there is a washer and dryer on the floor...family supplies soap).We then headed down to the cafeteria for coffee..which he had along with a muffin and cookie. Back upstairs we finished the laundry and had a chat with his physio. Some day she syas he can stand up and will walk; others he can barely stand or simply refuses. But at least they are trying.

There is one gentleman on the floor named Douglas who is terrific; helps the other patients with meals and small chores. He was due to leave today, which I think will be a loss for my dad. There are so few men around!

Nov. 22/96
I took Dad down to the cafeteria for dinner, as I had promised him I would. Even though he is still on pureed food because of the stroke, I felt he could handle the 'real thing' with supervision. We both had fried chicken with vegs and rice; he seemed to enjoy the meal although I found it stressful; I was either getting up to get something else or watching him to make sure he did not choke or put too much in his mouth at once.

Nov. 26/96
I dropped in to see dad after a meeting but could only stay until about 6:00 pm as I had a support group to go to. When I arrived, I had a fairly lengthy talk with one of the nurses about his falling. Apparently he tries to get in and out of bed by himself and ends up falling. They have tried placing the wheelchair next to the bed and locking it so if he does get up, he has it nearby. He still falls. I understand and agree with the 'no restraint' policy, but on the other hand if my father falls and breaks his other hip, he probably will never get out of bed for the rest of his life. We arranged to have a family meeting about this...they will call me.

I then called to dad who was shuffling his wheelchair across the floor to the lounge and asked him if he'd like a shave. He asked if I was staying for dinner and when I said I couldn't, he got very angry. I brought him into his room to shave him and he stated quite clearly that he was going to commit suicide...that he couldn't stand the lonliness any more and he was going to commit suicide. I just sat there with the razor (electric) in my hand, somewhat stunned. I was at a loss for words so just started the shaver and got going. After I had finished I suggested we go to the cafeteria for coffee before I left and off we went...thoughts of suicide behind us.

Nov. 28/96
Just had a call from the floor manager at the hospital..head nurse...about dad's care plan in regard to his falls. She had a number of suggestions which were:
1. place a non-skid foam pad on the floor when he is in bed so if he falls, there is a cushion; OK by me 2. relocate his bed nearer to the nursing station so they can a closer eye on him; downside...moving creates confusion and a bed may not be available. I shall ask him how he feels about this 3. use the wheelchair seatbelt whenever he is in it to help prevent falls; downside: by rocking he can actually pull the wheelchair over on himself. After lengthy discusion we agreed he probably would not do this, although there is always an outside chance. 4. lower the bed so that if he falls, there will be less distance for the fall; OK by me. He has tried to get out of bed in the middle of the night, but only once. I told her that if this begins to happen on a regular basis that we will revisit this whole strategy of restraints. I spoke with Debbie about this conversation and she agreed with all my decisions.

I had a very interesting meeting with Tom Koch, a writer, researcher and author of books on elder care (see publications/resources). He was a caregiver for his father and understood my emotions and concerns. One thing he said really stuck in my mind: "When you see your father shuffling across the floor in his wheelchair...don't consider this as something sad and hopeless, but rather as a victory. Your father has endured a world war, a stock market crash (he was a stockbroker), a depression, the raising of 5 childrem, the death of his wife, 2 strokes, a broken hip...he has survived and continues to survive, even if in his own world."