by francy Dickinson www.seniorcarewithspirit.com
A Talk with Francy; I have this picture in my mind of spouse care. I remember it from almost thirty years ago when my elder uncle cared for his wife with Parkinson’s. He had been a cared for man of leisure all his life because she had worked hard with her own interior design company in Seattle. She had worked long days all week, staying in a small apartment in the city. She would come home to Lakewood on the weekends to care for her husband who never worked a day of their 48 year marriage. She would take him to dinner, entertain with friends, leave him with a clean home, food for the week and bills paid. She worked into her mid- eighties when the Parkinson’s took her abilities away…she sold her business and came home. My uncle started to care for her in his own way. That way was not good. He was a man spoiled with his own life style and she was left alone most of the time. When you would visit, their home got messy, dirty and then horrid. Her care got lax and her food was awful. As she laid on the couch unable to move on her own, the room she was in was filled with trash. I worried about that the most; a woman who had filled her life with tranquil beauty was dying with trash everywhere she could see. I would bring dinner once a week and mother, in her mid eighties, would visit every month only to worry the rest of the month. We were unable to make changes, or move her to a care facility or do anything really. There were not the laws that we have now for seniors in care. So we just watched her care go down hill and wondered how my uncle could live his life in this manner. It wounded me and I have carried that frustration with me for all these years.
After my mother passed and I was then free from giving her care – I turned around and found my own husband suffering from dementia. It is a story that millions of people face but when it happens to someone you love so much, it just sends chills down your spine.
I am twenty years his junior and so at first I had a hard time telling the difference from him getting older and the dementia. But what I knew was the man that had given me a life of love and care, was not able to do most of things he had done in the past. So along with dealing with him, I had to change my own life and adjust to his needs. I remembered my uncle and vowed to give my husband solid good care.
Being a care giving spouse is a very odd roll. Part of you is still in the mind set of husband or wife loving your spouse…the other part goes into a roll of care giving mom that has to learn new talents to keep your spouse as well and strong as you can. It is not easy and it gets extremely lonely.
I suppose it’s the confusion that hits you with dementia. It not only consumes my husband’ mind, but it reflects off onto me. After a day of him asking my opinion over and over again, telling me he is going to do a task but never gets to the task- I often forget what he was suppose to do myself. Total confusion, spreads just like the flu. He will head out to the garage for a tool and stay there for half an hour. My worry buzzer will go off in my mind and I will go out to find him cleaning out the garbage can or sorting through the garden tools. He is off in his own world and nothing will bring him back. He is determined to accomplish some unknown task. So, I have to change his mind, I have to interject a new thought in his brain. “George would you come and help me I think the faucet is leaking and the water is going off everywhere?” Back he comes from the garage now re focused on a must do task. When he gets into the kitchen the faucet looks good and I say how good it is he fixed it. He will stand and look at it and wonder about it and I make him a cup of coffee or a sandwich and he moves on to that task. It’s a constant movement to keep him safe, calm and in a zone of happy thoughts.
At the same time, I have to make money. I can not leave the house and just leave him alone for any long period of time. But George is not in any way ready for a full time care facility. I do not make enough money to gift him a care giver each day or pay for a day center to leave him. So, I have to think of ways to make money from home with quick, less then two hour meetings with senior clients helping them find placement in care facilities. I do the research and find the facilities that fit their needs. They meet me at two facilities that I have chosen as the best and walk through them with the family and help them make the decisions. When I do not have a client I write and sell senior care help books and other how to ebooks and do my blog and tips on twitter @seniorcaretips
Once, I arrived back home to find my above stove microwave pulled apart and in a million pieces and my husband trying to fix it. I then had to step in and get him re settled with a new movie on TV…put the parts back as well as I can and then went to the store and bought a new microwave. The worry over him getting harmed or walking away while I’m gone is very strong. But as a working spouse care giver I have to try as hard as I can to keep him safe and still make a living.
I often bring George along with me to keep him busy and even then I worry he will get too stressed to make it through a long meeting with a client. I had a session with a lawyer last week and George just melted in the office, we had to get him outside to walk around and sit him in the car for me to continue and sign papers that were needed. I drove him over to a restaurant and after eating and talking he returned to his calm self and I was able to drive the 25 minutes home without worry.
Each day has its surprises. Some days are calm some are horrid. Some calm days can change in a second with anger and some awful days drive me to the edge. Where I have to take a deep breath and become creative to find a way to solve the current care giving problem. Problems can be solved, they just need the spouse to stay calm within and be creative about how to re focus or find where to ask for help.
My nights are filled with worries and sleep often eludes me. But I try hard to take naps, take breaks with time to meditate and do a lot of deep breathing through out my days. I eat good food and I take supplements that I am more than convinced keep me stronger than not.
I cook healthy food, not heat up frozen and I clean my home, but not with dedication. I talk to a select few that understand I need to vent and I need to laugh. I use my twitter group to release my tension and give to others to sooth my mind. I try to interact with George in a loving way even if I am on edge from an arguing session. I get him to waltz me around the living room, pour me a glass of wine, make my tea or rub my back so he remembers the pleasure of giving and caring for others. I have a good list of things for both of us to do each day…so we stay on a daily routine and I always tell myself that I’m a good and loving person even when I’m mad, as hell, at life.
The part that bothers me is the 24/7. There are no days off…only hours away. There are no – lets take a break weekends away when George gets so confused in his own home, let alone a new place. There are no go and visit your kids or sister when he has to be watched and one slip might mean him getting lost or getting so upset he gets sick. I have no escape, no way out. So, I have to remove that from my mind. I have to give myself a feeling of escape. By reading or watching TV in another room. By working in the garden while he takes a nap. By going out to the grocery store and giving myself time at a coffee shop or the library to read magazines. I have to make sure that he has a friend visit so I can just take a nap or go for a walk. Maybe take him to an exercise place so I can just listen to music or a book on my MP3 player, in the car.
His dementia/Alzheimer’s gets worse everyday…but in very slow and tiny ways. The doctor says he is progressing very slowly and that is good for George. But it is not good for me. I have to pay attention to his food and pills. I have to know when his episodes of anger and gait change are over the limit and we need to go to the doctor to get his meds changed. I have to make decisions for his regular health on a daily basis and it is a continual hardship to care that closely for another person. But I keep in my mind that I am giving a gift, not doing chores. I try to make his forgeting to take pills that I leave by his side at his TV chair- a joke and if they are not taken I remind him, tease him about it and watch him take them.
There are loney times. When I want to just talk to him, as my best friend and tell him about my day or my thoughts for the future. I want to have help with the taxes and the financal problems we have, I want him to surround me with his arms and just hug the world away. I want our close friendship of over 30 years to be there for me when I am doing the hardest job I have ever done, but it isn’t – my friend is already gone. I now stand alone, I stand next to him – but I am alone. Others that come and visit us see us together still – but we are not, he is gone in little ways and the gap grows each day.
I wish I could say, this story has a happy ending, but it does not. I am sitting in the living room typing while he is upset in the bedroom. Mad that he has to get up and dressed at almost three in the afternoon. I can be a difficult mom to him and he hates that part of our life. But what I know is that when they said through thick and thin when we married…I said those words and I meant those words and I am living those words with as much joy and love as I can each day. When the time comes that George is in a care facility I will continue to care for his daily needs in my own way…but just having him near is soothing to me. Someday, he will be gone and I will have all the time in world to do my nails and take lunch with my girl friends. Today, I choose to be next to him and I choose it day by day knowing that I make the choice to love and support him in my own way.
I don’t believe in caring for another until you drop over yourself. That is pointless, every spouse has to make the decision as to what degree they can give and help their loved one. We are all so different, some can care a long time, others can not give hands on care for any time at all…no one is better than the next, it is just who we are. But what I know is that we have to talk and reach out to others for help. We have to not allow ourselves to be all alone and scared, we have to tend to our own needs. If we do not stay strong, our spouse will fall faster and harder.
My tips from the heart? Eat, drink plenty of water, take good deep breaths, talk to your family and friends, kiss your spouse, argue with your mind not your mouth and laugh as much as you can. Joy is being a part of something and I suggest you join me on twitter, or any other support group in person or online. You get so many great ideas to help you through the care giving steps. I have a workbook on my site that gives all the basics in home care giving, take a visit and look, I think it will help you.
But most of all laugh as much as you can at the crazy things around you. Because when you stand back and look at your life it is a bit funny don’t you think?