The problem with Alzheimer's is the general public thinks of it as 'the memory disease'. I thought the same thing until it touched my family. Alzheimer's is really about the brain shutting the brain down one section at a time, sometimes a small part, other times a large section, randomly with no warning, so that eventually the brain tells the body to stop talking, stop walking, stop eating and finally to stop breathing.
In the beginning when you start telling people about your loved one's diagnosis the response is one of sympathy and offers of help and friendship, unfortunately many of these same people are scarce when you really need them and also many caregivers like myself are ashamed to ask for help. You find that people you thought you could count on are now too busy with their lives and don't have time, "Sorry, I wish I could but I have to mow the lawn this weekend." That was an actual response from my sister in law. Her yard was not that large that it would take all weekend. More about her later. I don't think my friends intentionally avoided me, their lives really are busy but when I did ask and was turned down it made it harder for me to ask again so I just stopped asking. In my case, I tried to keep my job but the constant interruptions from him at home, phone calls and even showing up unexpectedly at the office (we lived close to my job) were beginning to affect my ability to work so I decided to quit and stay home with him. Day care centers are extremely expensive, more than half of my salary at the time. We also had 3 teenagers at the home. They turned out to be angels and helped with anything and everything.
At the time of diagnosis we had just purchased a home that needed a lot of repairs. We had done it before and had built a beautiful home for ourselves so we took on another 'fixer-upper'. At first after I resigned, we continued to work on the house and it was good for him to have something to keep him busy and for me to occupy my mind and time. Slowly as the disease began to shut down more and more of his brain our roles switched instead of me, as the helper, and he, as the contractor, I became the one who did most of the work while he handed me tools, held up parts, fetched items and was the 'go-fer' guy. I learned how to do electrical repairs from my father, an electrician, who came occasionally to help. I learned basic plumbing from fix-it shows and the owner of the hardware store close to our home. Gradually, he lost the ability to help with this as he no longer remembered what a drill was or a hammer. I'm an adaptable person, a make lemonade kind of gal, so I would give him tasks to do to keep him occupied while I worked. That is the challenge of Alzheimer's just as you adjust your life to their declining ability they regress further and usually at the worst possible moment. Believing he could still retrieve tools for me I found myself in a dusty, cobweb filled attic on a hot day repairing a pipe waiting for a wrench. And waiting. And waiting. All the while calling his name, wondering where he was and why it was taking so long. I crawled out of the attic, climbed down the ladder and found he had wandered off into the yard and was digging a hole. I do not know why he was digging a hole and neither did he. That's how I learned that I had lost my construction partner. Re-evaluate, re-think and adapt. It is constant when caring for an Alzheimer's or dementia patient. As he advanced in the illness I could no longer work on the house and the repairs simply went undone. We lived with a leaky faucet or a cracked window because I could not trust him alone long enough to make the fix. Having resigned my career, money was tight and we were living off his social security.
Living in a rural community was more challenging than living in a city because the resources for help were harder to find. I needed some kind of support group and in my town they only met once a month- that is not enough. Fortunately, I discovered an online support group of hundreds of other caregivers from around the world so there was always someone on line to share frustrations and problems with or just chat, even at 1AM if you were having a bad night. Often we would laugh and joke, "Where else can you go and find the topic of the day is: "He pooped in the hallway again!" (Yes, they lose their ability to practice proper bathroom habits.) If I had a dollar for every time someone told me, "You should get help, have someone come and give you breaks." I probably could have paid a contractor to finish repairing the house! Another fact only caregiver's know- help is hard to find or very expensive. There really isn't a lot of help options, especially if you do not have a lot of money and even then the patient often becomes angry at the 'stranger' in the house. Really angry, some will even become verbally or physically abusive. Fortunately for me my husband was never abusive and I was grateful for that.
The help you anticipate receiving often does not come or it comes from people you do not expect. My mom and my children, his step children, were instrumental in providing help. My son would take him for excursions for a couple of hours. One daughter would sit and watch TV with him while I went shopping. Another daughter moved in with her husband and family as he progressed. All of them participated in his care; grooming him, feeding him, cooking, changing his diapers or distracting him while I took a nap or worked on a project. His 3 adult children did NOTHING. Did not call. Did not visit. Did not check on him until his mother informed them he was no longer able to drive. The next day I received an email from one of his daughters, "When would be a good time for us to come and pick up dad's car?" No, I didn't give her his car. I sold it and took him on a short cruise to Mexico that he enjoyed. From the on line support group I learned that this was quite normal, the family members would have fight over or neglect the patient's care. Instead of drawing a family together as it did with my family and I, it can divide a family as it did with my husband's family. My sister and mother in law offered to come up with their motor home once a month and give me a break. I jumped at it and said yes. Unfortunately, what I thought was a small drinking problem was full blown alcoholism so I ended up with two drunk alley cats fighting and yelling in my yard. My husband became afraid of them and did not want to be with them. Asking them to not drink in front of him caused a civil war with slanderous insults volleyed across phone lines including a call to the sheriff and reported elder abuse on my part. The sheriff came to do a welfare check and realized quickly who were the real problem, he was thoughtful and helpful. He suggested a restraining order and agreed that it was my responsibility to keep him safe from fighting alcoholics. Despite my attempts to arrange safe visits in public places they never attempted contact again. Even during the last week when I informed that he was in the final phase they did not come to say good bye.
I anticipated trouble at the funeral and informed the minister and the staff at the VA Memorial Cemetery that there may be an incident. Fortunately, they were quiet during the ceremony. Over the years my husband had expressed repeatedly to everyone that he wanted to be buried at the VA cemetery with a military ceremony. After the solemn event I arrived at my mother's home with my family and friends for the wake and I received a panicked phone call from the head of the cemetery, "I am so sorry to tell you that your husband's urn has been stolen! Never in my 35 years at this job has anyone stolen ashes! I don't even know what to say to you except that we will do everything to get them returned." After everyone had left the cemetery his mother and sister had followed the cemetery worker to the niche and asked if they 'could just hold the urn one last time'. He felt sorry for them and said, 'of course'. They took the urn and RAN! They ran through a place of honor and respect and memorial to veterans and sped off with my husband's urn. I now know that this is a federal offence with a $10,000 fine and 4 year prison term. I have yet to learn of anyone else who has stolen ashes from a cemetery. At a moment when I thought I could expect peace I was dealt an insult to his honor and his memory. Today his urn is in its proper place where he wanted to be with his other fallen warriors.
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