I am a 40 year old woman living in Chicago, Illinois. At the very young age of 65, my Mother began showing signs of dementia, which was ultimately diagnosed as Alzheimer’s disease.
I was her primary care-giver during her five year illness.
Once the diagnosis was confirmed, we had a lot of decisions to make, as you can imagine. The best thing we did was to read a book about the disease and what to expect. The book I chose and felt was excellent was “The 36-Hour Day”, although I am sure there are many other excellent references out there. This book not only prepared me for what was to come, but gave me great advice about how to deal with things.
For example, I learned that frequently Alzheimer’s patients will think that people are trying to poison them. Thank goodness I knew that this may happen, so I was better able to handle it, not only with my Mom, but on a personal, emotional level.
Mom’s medical care was routine during her illness. We put her on a drug called Aricept, which slowed the progress of the disease. She maintained regular yearly visits, but did not need much more medical care than that until just before she died.
As time went on it was difficult and then finally impossible to get her to take her meds. She believed we were trying to poison her. I was distraught…how could I care for her if she wouldn’t take her meds? My best friend is a Doctor and gave me very wise advice. She said, “You have done your very best. If she won’t take them, there’s nothing you can do, and that’s okay. You are not saving her life by giving her those meds.” So true. And a huge weight off my shoulders.
Now, a few years later, they actually have a patch for Aricept, which is likely a great relief to caregivers. We kept Mom at home, rather than putting her in a facility. Thankfully my Father had saved wisely, which enabled us to do this. Mom was happy and comfortable in her familiar surroundings.
The most important factors in caring for an Alzheimer’s patient are their safety, their comfort and their happiness, so it’s very important if you keep someone at home that you make sure to follow a list of safety guidelines, which you can get from the Alzheimer’s Association.
It is also important, as the caregiver, to take good care of yourself. Having a patient at home is an incredible amount of work, is physically challenging and emotionally draining.
In her final year we had a full-time live-in Nurses’ Aide to help us out. The cost, in my opinion, was unbelievably reasonable. I believe we paid her $26,000 for that year, including room and board, of course. She deserved much, much more. She was absolutely wonderful. Our other expense included a walker, a wheelchair (both of which can be rented, but are not very expensive to buy), and incontinence supplies.
As you can imagine, it was very stressful and emotional, especially for my Dad. He had a lot of trouble accepting what was happening, and became depressed. One thing I have found while talking to others who have had the same situation, though, is that you have to keep a positive attitude and just give the patient lots of love. There are funny situations that arise, and it’s okay to just go with it. I’m not saying it’s okay to laugh AT the patient, but humorous things do happen. I told my friend the following story and she still says she loved it so much, because it showed her that I was okay and taking things well.
One morning I gave my Mom a bowl of Cheerios, which had always been her very favorite cereal. She loved Cheerios her entire life. As she was eating them she said, “Amy, what are these? They are delicious! Where did you get them?” Yes, it was sad that she didn’t remember Cheerios, but she was so cute and happy to have “discovered” them, it brought a much-needed smile to my face.