Wednesday, August 30, 2006

Time for a Wheelchair

The rules of the Long-Term Care home say that whenever there is a significant incident they must phone the family. I had gotten over the phone calls form Dad. My stomach no longer churned into knots at the ring. It turns out that Dad has fallen again. I had to explain that he has fallen five times in two days in the past while and that it is to be expected. He balance is off and his strength is going. There is little we can do. Unfortunately, he continues to try and get up in the night. He either refuses or does not know to push the call button to get help. He gets out of bed and then falls on the floor. The staff wisely put his bed down as low as it can go and place two mats on the floor. Eventually, he will not be able to raise himself out of the bed. In the meantime, this assuaged all of our concerns.

It is now time for a wheelchair. Brian and I cannot support him enough to help him move about. His balance has disappeared. We must find one somewhere. There are places that rent them, which is what we shall do since we don’t know how much time Dad will be with us. Since he is slumping over so much I worry about him. He seems to lose his balance just sitting and falls over to the side. He has been using the nursing home’s wheelchair but he still has the walker that clutters the room. There is little enough space with the pads they have on the floor. I find it difficult remembering what I need to do for Dad. I make non-mental notes for a frame of reference. I cannot focus much of the time. This is the difficulty balancing home, my husband and adult children, work and Dad’s care.

Monday, August 28, 2006

Dad’s Goes into Long Term Care

Today is the day. We went over to the Manor and packed up his things. I had made the mistake of taking in suitcases on Friday. It disturbed him so much that the Manor staff take them and hid them. Lord knows he is agitated enough. I thought it would help him understand what is happening. I had so carefully prepared him. He had said, several time, that he isn’t getting the kind of care he wanted here in the retirement home. He tell me so many times that it is great in the beginning and now things had gotten worse. He does not understand that he is the one who had gotten so sick that they could not manage his care in a retirement home. We loved having him in the Manor. People are not as ill as in the nursing home and the care is similar to a luxury hotel. Now that he is refusing meals, baths and generally being so demanding on their time, he needs to move.

Leisureworld is a private institution. There is some confusion regarding public or private setting for care. The resident is subsidized a per deum amount, and then, should she or he choose to, they can put that towards a private room. This is essential for Dad. He is loud and is often awake at night. We cannot allow him to disturb someone else.

We managed to get Dad into the car with some difficulty. He is a tall man and, while he had lost weight, he still is a significant size. Brian drove the mini-van with Dad’s chair and luggage. I drove Dad in the car. The foyer is a lovely place. With a couple of couches and chairs, many flowers, donated by local florists, or grieving families, it is always bright and cheery. He cannot manage his walker and we had to find a wheelchair. He can barely lift his profoundly swollen feet and we had difficulties with the footrests. I wheeled him by the front desk, where II had previously completed almost all the paperwork. We passed the central courtyard. Filled with patio furniture, trees, mature plantings, it is quite nice. They had BBQs there in good weather. It is a peaceful place to visit.

Upstairs we went to Dad’s room. It is pretty stark. It is definitely a hospital-like setting. Bare floors, a simple hospital bed, pine-laminated wardrobe and two two-drawer dressers with a few nails in the walls for pictures. I wrote down a list of pictures to bring and hang up. They encourage families to help make the residents more at home. The window overlooks the front parking and courtyard. I will spend many hours gazing out. The curtains are a neutral brown colour, with a window that, thankfully, opened up in good weather or bad weather indoors. The sun shines into the room, making it bright and give more hope than we had a right to look forward to. I wisely do not take as many clothes in for Dad. He will never be outdoors again and never require a winter coat. We leave those things in our rental locker. He is not hopeful, nor optimistic, nor is he particularly pleased with being there. I take him on a brief tour of the dining room. There are two big dining rooms per floor, with an adjoining cafeteria for food preparations.

Today, Monday is the regular day for the doctor’s visit. There is one doctor for this floor. He usually does rounds with the Charge Nurse, visiting, briefly with each resident and noting their needs. The Charge Nurse can phone the doctor at any time and usually has a standing order for meds as required. The Charge Nurse and the doctor need to do an initial assessment of Dad and they ask me to leave Dad’s room. I stood in the hall.

Each resident has a framed plaque screwed to the wall outside beside his or her door. In this enclosure staff put a brief biography of the residents. It humanizes the person, who is often unrecognizable as the person they used to be. I read some of them as I waited for the doctor and nurse to finish. I prepared one, not as succinct as the others. I am usually accused of being to loquacious in my writing practice.

The Leisureworld brochure suggests that families bring in small personal items to make residents feel at home: pictures, family albums, calendars, TV, radio, etc. Many residents take things out of their rooms and lose them and items must be labelled. Some like to wander in other resident’s rooms and borrow items. This is difficult to control.

We declined to stay much longer, even though we are offered a meal. I thought it best he gets used to the routine, the room and the requirements of the institution. We leave him at dinnertime - hoping for the best.

Tuesday, August 15, 2006

Declaring Dad Incapable

The official papers are signed. He is now a candidate for a government bed in a LTC facility. We are wondering if he is suffering from a urinary tract infection again, as he seemed to need to urinate every ten minutes or so. His hearing seemed all right today and he ate his muffin in his room as I watched. His knees and feet are so bad – so swollen.

We had bought him socks to keep the swelling down. It is hard getting them on – but he had two pair he wore only in the day. The staff rinsed them out every day. It seemed to keep the swelling down, but Gay phones Dad’s GP and he prescribed diuretics. They went down a bit in time, but never got back to normal. Getting old sucks. The alternative is worse, however, and we keep on trying to do the best we can.

Saturday, August 12, 2006

1:00 a.m. phone call

When you get a call in the wee hours it is easily either an emergency, or the Manor need to talk to me, or some nutbar. This time it is Dad again. It is bittersweet relief. Brian takes the call for me. The first time Dad grunts “Uh” and hangs up. The second time he manages to say that there is something wrong in the upper or lower part of the house. Fire is a big concern up here. We wonder what is up. But he does not think we can do anything and we convinced him to hang up and go to bed. The third call is something about the burners.

Fortunately, the duty staff take the phone and said there is no problem – no fire – no worries - he just cannot sleep or make the TV work. She tells us he is confused but not afraid. I called the Manor in the morning and they said he’d been up until 2:00 a.m. and then went to bed. He then got up at 7:30 and went down to breakfast.

OF course, Dolly, Dad’s neighbour, does not need Dad watching TV since he had to crank the volume up so loud it sounded like fight night next door to her. Poor woman. It seems as if it is after dinner that the panic starts.

Is this sundowner’s syndrome or a foreshadowing? Many elderly adults miss spouses and they become very sad and agitated in the evening. It seems to be something
By the time we managed to get in to visit with him he tells us, “I don’t even know what to think about.”
“We’re taking care of you Dad. You need not worry.”
“It doesn’t get a good thing on here.”
“It’s the best they can do, Dad.”
“I asked three girls to help me and they wouldn’t do it.”
“ Dad, they don’t know what to do for you.”
“It’s all wrong now anyway.”
“Yes, Dad. It’s the brain tumour coming back.”
“They’re not taking care of me.” These wonderful women who try to help him simply cannot. What he wants is to be back to normal. This will never get better - I begin to understand. “Lord give me strength”, I pray.

He is terribly confused. He keeps telling me how mixed up it is in his head. This started back during the time he had a bladder infection. He just cannot get things straight and know it. This is profoundly difficult on all of us. How much worse will this get?

Friday, August 11, 2006

Choosing LTC facility

It is now time for Dad to be placed into another care center. I spoke to Gay and I spoke to case Community Care Access Centre (CCAC) case manager, Kathleen, who said that we have to put him on a waiting list. She says it is best to get him on a list soon, before it becomes an emergency to get him from a hospital into a nursing home, as he can be placed anywhere up to 150 km away. I do some research.

We look around and have a tour through Leisureworld in Gravenhurst. I do not think that there would be much difference in these government-subsidized institutions and we are pleased with the Gravenhurst location. We have to find a location that suits us, since we know we’d be visiting a lot. I filled in the forms and take power of attorney for him. Dad is no longer able to make decisions. His cognitive functions are quite limited. He cannot even keep track of his pills anymore and telling time is now beyond him. There are a number of forms. His attention and memory are gone, but he isn’t a risk for running away; he simply needs 24 hour nursing care.

There are many booklets explaining what kind of facility this is. I duly read all the information. Brian is incredibly helpful in sorting through it with me. He had place his mother into such care several years ago. I am numb when we visited – seeing all the seriously ill patients. The Alzheimer’s floor was the most difficult. Brian’s stepfather had had this condition and he knows what to expect. Brian asked all the right questions for me. He knows the questions to ask having done this for his mother and stepfather.

When a person’s needs become more severe, or they do not want to remain at home a placement coordinator will help and be actively involved in admitting a client into a Long Term Care Home LTC. There are rules and regulations regarding access to LTC. The process begins with a home visit, if one has not yet occurred through previous access to services, an assessment of the client’s capacity. When a client can no longer secure adequate care at home, there is a decision to place the client and navigate them through the process of finding a Long Term Home Care placement. If they choose to stay at home, often-family members have no recourse, unless they are deemed incapable of making this decision. The case manger is in charge of this protocol.

The client, or designated advocate should the client be deemed unable to make this decision, can take advantage of a Long Term Home Care placement and begins to sign a series of papers, The case manager has permission forms such as permission for CCAC to gain access to information from the doctor, and a facility choice list, which is reviewed by the case manager. Sometimes, if client has dementia issues and behaviours that are beyond the ability of a Nursing Home, or extra nursing care, then they must move to a chronic care hospital. They are deemed ineligible for this more intense care if they can drive, or manage their own needs. Then they are advised to go to a Retirement Home. Files are shared with the Long Term Care Homes on their facility choice list, names will go on waiting list until bed is available: whether it be a private room, or not, or the type of accommodations they have requested on their facility choice list. The client must choose no more than three homes, based on location and physical requirements. We made this choice for my father based on proximity to our home.
As spaces become available that facility will contact the case manager, or the client. When bed offer comes you have a few days to accept the bed offer. It is pointed out that should a resident be admitted to the hospital the bed could be kept reserved for medical leave for 21 days. Otherwise they lose their bed placement and are discharged from the Long Term Care Home. If a resident requires a psychiatric assessment they may stay away for as long as 45 days, this is the only exception to the rule.

We traveled an hour to Orillia to rent a walker. Dad had been borrowing one. The government subsidizes it up to 85% - providing the patient is not in palliative care. What difference this makes I do not know. But the funding isn’t there if the patient isn’t going to last long enough to make the paperwork worthwhile, methinks. We do not care. We need to keep him safe and to allow him to move around. He is not happy with this, but we have rented it. We have to pay one month in advance. Now the trick is to get him to use it. He likes to put his shoes, newspaper and other things in the basket. It is a great item to have – I wished he’d been using one before but only “sick, old people” use them he tells me.

Wednesday, August 2, 2006

Phone calls and tornadoes and power outages

My friend, Eileen, came for a visit from Ottawa weekend. It was her birthday this week and she had combined a visit to Peterborough with a bit of a side trip to see me. I missed my dear friend very much. Brian was in Ottawa and Eileen and I were merrily preparing to have our second day of our girl’s visit. We were down at the water, swimming, when we saw the clouds rapidly approaching. I know we were in for a storm – but what a storm. We casually cleaned up our swim accoutrement and headed up to the house. We opened a bottle of wine and sat on the sofa visiting, watching the winds pick up. I had planned on barbecuing steak later, a fine end to a fine day. The winds picked up and then slowly changed from wind to gusts to a torrent of water and wind. The leaves on the tress were blowing in directions that do not make sense. There were down thrusts of wind, common in the area I found out later. They snapped off branches and surprised both of us with its ferocity.

The phone rang and it was my father. He was very upset. He had his good days and bad days. Today he was most upset, as the TV isn’t working. He had been such a go-to-it kind of man. If anything broke he would be able to fix it and make it right. With the advent of technology some things begin to be beyond his ken and this made life more difficult. At the time I really did not understand how severe this storm would be and I tried to calm Dad down. Our power had gone out and he really could not empathize, TV and his sports shows being much of his life nowadays. I tried to calm him. He was quite upset that I could not help him fix his TV.

I felt as if I had let him down in some way – but could not see myself driving the 30 km in to see him, even if I could do something about this situation. We finished our conversation, I said goodbye to him feeling a huge cloud of guilt settle over me. The winds had abated somewhat, and I began to get the barbecue going. I had never barbecued in the dark, the deck lights being quite efficient. I did my best, without power, and we had a salad with our meal. The candlelight was quite gorgeous. Eileen and I had shared many meals as we had gone out every couple of months on a regular basis to the theatre when we lived in Ottawa. I missed my old life. I made the mistake, in my depressive state, of not reaching out to someone, friends all left behind in Ottawa. I had no support system other than my children and husband. It was not enough.
We took a trip into town the next day. I had to see Dad, and Eileen and I wanted to get some groceries. Many stores were out of power and did not get it back for days.

After visiting with Dad in the hall, I thought it time to go. He hadn’t been all that clear with me. Complaining about one thing and another. I went out to the car and asked Eileen, who was waiting with groceries, if she wanted to see Dad. He was quite happy to see her, although they’d never met. She is quite attractive and my Dad was quite perky seeing my beautiful friend after being morose with me. This is something I had found with many seniors. They were angry with close family, but remember their manners when interacting with outsiders. I was angry at this. He had been begging me to stay longer a few minutes before, but after talking to Eileen, in an apparently normal fashion, he told us to go off and enjoy ourselves. He was a different man. I just could not understand it!