Winter is a difficult time for me. It is cold. The colors are gone leaving the scenery black and white. Everything is lifeless and drab. As I watched this disease consume my mother, I wondered if I would ever feel the warmth of summer again.
It was a miserable day when I took my mother to the Medical Center. I had difficulty admitting to myself, but I knew this would be the last time she would ever see her mobile home again. She sat next to me in the truck showing no emotion. This had an impact on my life I will never forget. It broke my heart. Everything she owned was gone. She would no longer sit on her couch, or cook on her stove. She would no longer be able to walk in her yard, and feel the wind of freedom on her face. My mother would spend the rest of her life in a nursing home. This disease had taken so much that she didn't know or care what was happening to her. At that moment I felt that I had failed her.
I was holding back the tears when I took her inside the Medical Center. I kissed her goodbye and left. The rage in me was so great I wanted to explode. I wanted to scream so loud that the world would have to acknowledge my pain. I wanted to beat the truck steering wheel until it was dust, but most of all I wanted to turn the clock back to the way it was before my mother got sick.
The Medical Center evaluated her again. The results were what we expected. This time we had not choice. She would have to be admitted to a nursing home. When I was a baby my mother changed my diapers, stayed with me while I was afraid, and kept me from harm. She protected me until I could protect myself. Now our roles had been reversed. I was in charge. I knew it was up to me to look after her as she became a child again on this final step of our journey.
The Medical Center furnished me with a list of long term care facilities. There are so many steps you can take so you and your loved one can find a nursing home that fills everybody's needs. Check with the local nursing homes and see if there are any complaints. If there were complaints, were they taken care of in a swift and satisfactory manner. Make sure they accept Med-a-Care and Med-a-Caid. Check and see if they have a special section for Alzheimer's patients. If not make sure they have locks or alarm systems on the doors. Talk with some of the residents and see how they are treated. Don't just talk to one. Talk to many so you can get an overall view of the way they are treated.
After your loved one is admitted, check on them often. Don't visit them at the same time every day. Vary your hours. You have the right to visit at any time, even after visiting hours. Notice how friendly the staff is. Most nursing homes are under staffed and just because a person wears a uniform doesn't mean they are qualified as a care giver. Fortunately, incompetence is not found widely in the care of the elderly, but it only takes one time when it is your relative. When you notify someone of a problem, notice how long it takes before it is corrected. If you feel it has taken too long, notify the nursing home administrator.
Don't be critical. The staff has a hard job to do. Complain about situations that count. Don't complain about every little thing. If you are a constant complainer, the staff has a tendency to overlook it when you report major problems. Try and make friends with the care givers that are in direct contact with your loved one, such as nurses aides and house keepers.
While I was caring for mom and I was too busy to worry about guilt, but now she was in a nursing home and I had time to relax and reflect on the past. I started feeling sorry for myself. Except for anger, guilt was the most difficult emotion I experienced.
Guilt is an exhausting weight to carry. You become mired in self pity. You question your decisions, thinking you could have done something different, better, but the truth is you make the decisions that have to be made and live with the consequences. In the following years you will have plenty of time to analyze your actions. Some deserve the guilt, but others live their years in torture only to realize too late the destructive legacy of guilt. My advice is do everything you possibly can now and let the future take care of itself.
I ultimately realized that I had done everything I could for my mother, but after a bad visit to the nursing home, I would leave feeling that I hadn't done as much as I could have because when a person reaches the second stage of Alzheimer's, a good nursing home is the best place for them.
Guilt is bad enough, but anger is worse. What do you do with anger? I know that no one is responsible for my mother's illness, so who do I direct my anger at? My wife? She knows how I feel and gives me the space to work it out. She knows just being there with me is enough. Without her I don't know if I could have made it through this nightmare.
My anger is directed inward. I hold it inside and this confuses me because I don't consider myself to be a complicated person, and I am not used to feeling sorry for myself. Often during mom's sickness, I wondered how it would feel to find a land far off from everyone and become a recluse. Not to worry about appointments and obligations. Not to watch my mother decline each day, but then I wonder who would care? Who would be there to pick up the pieces?
Another fear I have is the future. Will I get this diseas that crippled my mother and my grandmother? My mother always worried she would end up like her mother when she got older. I used to console her by telling her that Alzheimer's is not hereditary. Well, now I know how she felt, and I know heredity does affect Alzheimer's. I am 30 years younger than my mother. Will I worry as she did? I already do.
