All I seem to write when I am stressed is poetry; angry poetry. There has been a lot of that in the last two years. Mt husband had a stroke and is in a Home;paralyzed on his left side with neurological brain damage. I visit him everyday but he is not the reason for my stress. It is the System. It is the way Seniors are treated. We not only become invisible as we age but we become tolerated. I have been letting this get me down, being a shadow person, afraid to speak up and then I wasn’t anymore. I have to advocate for my husband and other Seniors. There needs to be change.

There is ‘care’ depending on who is working that day or evening. Most Care Aids are wonderful people; some are not. Most of the Care Aids at the Home my husband is in will not put pants on him as they say his legs are too heavy (from edema). He is not given the dignity he deserves. But I have given up that fight because he does not care. I just try to make sure a blanket is covering him, he is not left sitting in his wheelchair in a hallway and that he is comfortable in his room.

There are a lot of rules to learn when a partner goes into a Home after a massive stroke. And there are a lot of costs the public, in general, do not know about. The first shock was when he had to wait 10 days to go from the hospital to the Home, I had to pay about a hundred dollars a day for his care. It is not covered. I have found that transportation is a huge problem. The first one was a wheelchair. I guess, if I ever thought about it all, I assumed wheelchairs were part of the privileges of being in a Home. that cost $10,000 of which we had to pay $2,000. The adaptive clothing is very expensive and we spent over a thousand dollars first day. You pay 80% of the resident’s income which I was living on. I had to financially divorce him on paper so I could apply for Guaranteed Income Supplement which still does not leave me enough to pay the mortgage, bills and repairs.

While the spouse is struggling to deal with the loss of a lifetime partner, you are faced with one obstacle after another. There is no help. If you are of low income, certainly things are paid for. If you are rich, you can afford the extras. Dave, my husband, was a working middle class man. He does not get any breaks. When he had to go for services at a hospital an hour\s drive away I was quoted $600 each way for Medivan plus $60 an hour for the two men who drove and transported him. I contacted every level of government I could think of from Senior’s advocate to MLA and found there is no help. I finally found out there was a grant offered that would help him.

Now when he needs transport there is Shuttle in town that costs $75 an hour, so most round trips for dental or anything else are out of town and cost around $300 for the ride. But at least they can take him. I tried to take him on the ‘notsohandydart’ one day and as I had to be the one to push him on, he did not get to go. The 200 pound driver watched me take several runs at the ramp and mutterd how he could not help me. Staff from the Home were not allowed either. I pushed Dave back inside crying; me not him. I just wanted to take him for an outing, some sunshine. There are little incline driveways out of the Home, so I cannot even get him on the sidewalk. It is even difficult trying to take him to the garden as the steep turn out the door and the door is not as large as it should be . . .we spend a lot of time in his room.

We play Trivia and he is sharp and funny and engaged. He is not interested in Bingo and only attends Music Trivia during Activities. I go everyday because I want to make sure his teeth are brushed, and his hair and he has dignity. Sometimes I find his remote for his tv on the floor under his bed and he is staring at the walls. Sometimes he is sleeping at the table where he just had lunch. I have to constantly search for his glasses. He has no control over these things. He often looks like they gave his wheelchair a push into the room and kept walking. He is supposed to have the call button on his lap. These are minor worries but they add up. I am faced everyday with the knowledge he is never going to come home. I cannot afford a $20,000 upgrade to the house. I can barely pay the mortgage.

I have had to take on a part time job but even then it is not enough as you cannot earn more than $5,000 a year or you lose your GIS. My life is getting smaller. I see Dave, sometimes I go for a walk before work. I have a large dog and a cat who are left alone too much. They are my best friends and the reason I hang onto a house I cannot really afford anymore. I have had to take on all the upkeep, bought 3 appliances since he went into the Home, but the mortgage is cheaper than rent. I cannot pay off our debts unless I sell. It is a circle of financial worries I cannot escape from. When Dave was having smaller strokes he was not always thinking right and he took out a Line of credit against the house. I have to pay it.

There should be an advocate at every Home in Canada who will help fine rides, medical equipment, clothes . . .I have bought a leg brace, nobody will put on him, a mirror for physio that never got used, neck pillows, firm bed pillows . . .we pay $25 for a haircut, $40 for a foot care person, $35 for cable, $10 activity fee and this all over and above the 80%. I believe 50% would be a more affordable amount to use for his care. The spouse not going into a Home is left with nothing. The resident gets feed three meal a day, the spouse left at home does not eat as well. The constant advocating for his dignity, his care, his transport, his rights wears me down.

I think most of us Seniors prepare for the loss of a loved one. We did. We paid for our cremations and service a long time ago. I have a small insurance policy for my children. Dave did not. His insurance only lasted for five years after retirement. He did not qualify for mortgage insurance. By the time we were in our fifties his health was not great and we did not qualify. We did not ever think about him going into a Home at 73. I have not yet found any support for Seniors in wheelchairs. He cant go anywhere and that is not healthy. I thought Care Aids took residents outside for fresh air . . .they do not. Even the ones who smoke have to be able to get out and in on their own. I have been told I cannot help and then when I ask for help for someone I am told they know the rules.

I have been yelled at by Care Aids and of course, reported them. Dave tells me he is yelled at sometimes but as he has brain damage I am told that is not likely. But I see the way residents are treated. Dave is treated better than he was but then I am there everyday. I am there so often, residents think I work there and try to grab my hand and ask for help. I am not allowed. I was banned from the dining room where I used to go and get Dave. I was too disrupted. I still go inside sometimes when I see him slumped over in his chair the only one forgotten. I do believe the majority of people who work there are great but there is always one or two . . .they are short staffed a lot and they do work hard, for the most part.

Most Seniors magazines paint this picture of elders going on lavish trips, hiking in the mountains, getting facelifts . . most of us are struggling with debt, a disabled partner and eating cereal for supper. I try to walk with or without a friend at least twice a week, I have a grandson who visits once a week, I have family close by, I work but only 10 hours a week, and I spend a lot of time alone. There are endless errands and chores just to keep the house from not falling apart. Today I have water seeping in under the carpet downstairs, a power outage two days ago, a tire replacement a few days before that but I know everyday I can go see Dave and I feel blessed. But that does not stop me from being angry that we worked hard all of our lives and there does not seem to be much help now.