My mother had Alzheimer’s. It began with little strokes called TIAs where she would have numbness and tingling down one side of her body. She didn’t realize what they were. She was in the generation where women were not assertive so she did not tell the doctor’s assistant why she was trying to get in to see him. By then it was too late and she continued to have these TIAs.
Often dementia follows after a vascular event. If Alzheimer’s symptoms were present when the vascular event occurs, it weakens the body enough to trigger the dementia.
When her neighbor across the street from her died and her best friend across the block had passed, she no longer had people close to check on her. She was furious when we insisted that she move into an assisted living center. For one month, my brother and I (shown left , with my mother and family) were persona non gratis. Then she went back to the home she had lived in for over 42 years and realized she was glad that she no longer had the responsibility.
After her strokes, she continued to drive. She lived out in the country. She had a blind spot on her right and so she would only go on trips where she could turn left. We were terrified that she would hit a jogger or child riding a bike but she didn’t. During the last year, she did have three accidents. She was beginning to get lost on previously familiar routes. When she moved into the assisted living center, they provided transportation and so there was no need for her to drive. The car sat in the parking lot for a year before my brother bought it.
There was so much to know when the decision of where she would go was made, but like most families, we didn’t know a lot about types of places she could go or the possibility of her staying in her home with a caregiver.
Having a caregiver come part-time could have helped because they could have observed for us. Some caregivers will come and sit with their charge watching TV and getting meals. Others will anticipate activities that will stimulate memories, enhance brain function and keep the body active so that they are able to maintain their charge’s mental and physical well-being. That can only happen when the caregiver is observing and being proactive about the person’s needs. When they are observant, they can see changes in behavior or condition that may initiate a visit to the doctor and allows them to provide a verbal dialogue about changes they have seen. (More on this: https://caringforparentstogether.com/category/topics/in-home-care/)
Mom became overtly sexual in a way that she never had before. She talked about it openly and it was out of character for her. She also began to drink wine. She would have ‘only a little bit’ but 15 minutes later, she didn’t remember that she had already had a little bit and she would have more. It masked some of her pain, I believe. This happened at a time when she was on oxygen all the time. We found wine bottles hidden throughout her apartment. She would just go to the grocery store and buy more. Her psychologist recommended giving her a little drink every night before bed. That way she could still have some.
Many times she would be frustrated and angry and say “Parts of my life are missing!” In the beginning she knew that she was losing her memory. She was depressed and felt like her control over her life was slipping away from her.
Later, she became more complacent. She couldn’t remember anything to make her agitated so she focused on what she appreciated about her family.
We found that anything hidden behind the door in the refrigerator or in the cupboards or drawers were as good as gone. She did not remember them. Eventually, we had to remove the coffeepot and have the oven unplugged because she couldn’t remember to turn it off and we were afraid she would start a fire. In the end she could not even change channels on the TV so she watched the same channel all day.
She couldn’t remember that we had come to visit her even if we had been there the night before. Finally, we placed a calendar by her bed with instructions that anyone who visited had to write their name in on the day so she would know that they had been there.
I had come for a 3 day visit in-between jobs and stayed with her. During that time I noticed that she was always scratching her face. It was dry so I purchased some moisturizer. Her nose was bleeding from the constant oxygen. The nurse suggested vasoline placed on her nose membranes to act as a barrier. Her toe had a fungus that had not been noticed by the nurses. I tried to soak her feet in vinegar which is good for removing fungus.
Oh how I wish I had known then what I know now! But that would have been impossible because I have educated myself because of what happened with my Mom.
Here’s my advice for when you first figure out something is going wrong with your loved one and you realize you need to step in:
1. Visit the Area Agency on Aging for your area- in St. Louis, it is Saint Louis Area Agency on Aging (SLAAA) or in the county, the Mid-East Area Agency on Aging (MEAAA). To find your Area Agency on Aging, go to http://www.n4a.org and input the zipcode of the area where your loved one lives.
2. Ask your loved one what will support them in living a higher quality of life. Depending on what stage they are in, they may not be able to answer that but if you get started early enough they can verbalize their wishes.
3. Get a complete medication list together with the name of the prescribing doctor, name of the medicine, amount and how often taken, and ask them what insurance they have.
4. Talk to them about what doctors they have seen and when their next appointment is scheduled so you can accompany them. The more you get involved, the more you will know firsthand. It was during that three-day visit with my Mother that I felt I learned the most.
5. As tough as it seems, think ahead to the time they will have to go to the hospital and find out what hospital they would like to use and make sure it is in their insurance network.
6. Find out what legal work they have completed and who is named as the Healthcare Power of Attorney. Have they filled out an advance directive? An Advance Directive or Living Will is a legal document in which you tell medical professionals what treatments you want or do not want given to you in the event that you are incapacitated and need treatment. (For more information on this: https://caringforparentstogether.com/category/topics/end-of-life-planning/)
7. If you don’t have an advanced directive, visit an elder law attorney to get this work started.
During my visit I noticed that she was getting more and more tired. At lunch she was practically falling asleep in her plate. I walked her down to her room and she laid peacefully on the sofa. The intake nurse came in to take her vitals as she was being placed in a higher care facility. The nurse said, “Your mother’s blood pressure is only 80/40.”
“What does that mean?” I asked. She replied that protocol was that you sent them to the emergency room so I called 911. An ambulance wisked her off to the hospital. She had pneumonia but had shown no outward symptoms. I remember saying to her, “Mom, I just need to know that you are going to get better.” The truth was, it was only going to get worse.
Once she was treated, she moved to the long term care facility. Within a week, she had a massive stroke and was in a coma for 2 weeks. All of my brothers and sisters were there day after day and she even began to rally a little. The one day that we took a breather and didn’t show up to the hospital was the day she died.
Knowing what I do now, if the intake nurse had given me alternatives, I might have called my brothers and sisters and said, “Mom is getting ready to pass. Come say your goodbyes” However, nurses are trained in the medical model which is to cure. When one reaches a certain age though, there is not going to be a cure and it is important to let go and give them permission to go.
Through this experience, I was motivated to help other families with their experience caring for parents. My brother and I made all the classic mistakes and I realized my mother had been my best teacher. I returned to college and earned my Masters in Gerontology and started a Geriatric Care Management company that specialized in dementia. Today, I educate caregivers through my website, blog articles and the radio show that I hosted “Caring for Parents Together” in which I interviewed organizations providing services, information and resources serving the elderly. My book, Blueprint for Care/A Guide to Managing Care for A Loved One continues to help many caregivers understand the complex environment of senior care (available on Amazon).
Written by Diane Keefe, CMC MA Gern