DEMENTIA

DEMENTIA
Dementia is a very debilitating and sad medical problem. While this is an under-statement, I say this from observing it’s effects close up - for over a year now. It is something that doesn’t improve over time - or go away - it just gets worse. The mind is a very complex organ.
I have read a lot about the subject, as I am part of the “old-old” cohort. Dementia used to be called “senility” or “second childhood”. Today, we know what it is, and refer to it as “dementia.” Also, I have audited many “Successful Aging” classes at Cal-Berkeley. The subject of dementia was discussed many times during these sessions. There seems to be more dementia today than ever before. There are many factors for this: - most of us are living longer than past generations, (who died before they became afflicted )- better diagnosis - a larger population - better reporting - or a combination of these reasons.
I first noticed Marie’s forgetfulness over a year ago. She was 84. She was returning, in the car, from a shopping trip. She told me that she couldn’t remember how to open the garage door. She finally remembered the garage-door opener. I suggested that she stop driving, and it wasn’t much longer when she did. From this point, her mental capability continued to decline.
I am surprised how fast her memory and comprehension continued to worsen. (Just now, she asked me, “Where is my Mom?”. I explained that she had died and is buried in the cemetery at Placerville, She said, “I don’t mean my first one, but my second one ”.) Such strange comments go on throughout the day. Also, she frequently will ask what time it is, even though there are numerous clocks in the rooms, and she has two watches. She will ask if it is time to go eat - just after we have returned from the dining room!
While still living in Vallejo - nine months ago - she functioned fairly well as far as the “activities of daily living” are concerned. She had difficulty recalling names, dates and recent experiences. Her interests deteriorated. She no longer was interested in reading, watching television., or gardening. These were important activities for her prior to this.
I started to do all the shopping, cooking and laundry. For a while it was no problem. But then, it became stressful, and I realized that I needed some help. I joined a Caregivers Support Group. The Facilitator, Fred Stephens from Santa Rosa, and the group, were very helpful with their advice and counseling. After listening to my “story”, and counseling with my three daughters and myself, Fred suggested that I get some help. My daughter looked into Meals on Wheels, and signed us up for the service. This worked out great for a few months - it took a load off me. But then, Marie decided that she didn’t care for the M.O.W. - so back to square one.
My daughters suggested that I get some respite care for Marie, so that I could get out for some fresh air. Fred stressed how important it was for caregivers to take care of their own health - mental and physical. Otherwise, not only would they not be able to care for their loved one, but they would probably pre-decease them. So, I was fortunate in getting Donna to stay with her. She was very good with Marie. She had a nursing background, along with a caring disposition and a nice personality. She was usually available on short notice, which was very convenient for me. Her staying with Marie permitted me to get out, without having a guilty conscience, knowing that she was in good and reliable hands.
I was afraid of both of us falling, and not being able to get to a phone, to call for help. So, I subscribed to a medical -alert system. This gave me peace of mind. While I felt more safe and secure, Marie couldn’t understand about pushing the pendant in an emergency, let alone wearing it.
Much before this, I started looking at local assisted -living facilities - anticipating a not too distant need, and for a more leisurely decision and transition. Marie wasn’t interested in moving, even though the reasons why she liked Vallejo were no longer valid. So my daughters and I looked at Quail Creek, a new assisted living facility in Fairfield. It is affiliated with Paradise Valley Estates. I was impressed with the facility on our initial visit, so I signed up. While it is expensive, personal care is labor intensive. We are receiving quality meals and care. We are now located in Fairfield (CA), close to our three daughters. They have been very supportive and most helpful. Without them, even with assisted living, I would not have been able to partially care for Marie.
The brain is a marvelous organ - complex and unique. When it deteriorates, it affects the functions that it controls. Dr. Pai is Head of the Neurology Department at the Kaiser Medical facility in Vallejo. He diagnosed Marie with having Alzheimer dementia. He based his decision on the MRI scan of her brain. He showed us the picture of her brain, and pointed out the frontal cortex, showing a 50% loss of brain cells. While I was very disappointed with his diagnosis, I wasn’t surprised. I had hoped that there might be a slim possibility that her dementia might be reversible (if it were caused by medications or other reasons.)
Dealing with a demented person 24/7 is very irritating and frustrating. I feel guilty, sometimes, for my poor reaction to these emotions. I pray daily that the Good Lord will give me more understanding and patience. I am having trouble adjusting to her personality changes, and dealing with her endless questions and strange actions. I tell myself that this isn’t the Marie that I knew for almost 65 years. I no longer know her. Dementia has robbed me of my wife, and my daughters have lost their Mother. Our ten grandkids have lost a grandmother and her friends have lost a friend. Marie’s actions (or inactions) are not voluntary, or premeditated, and I shouldn’t blame her by expecting normalcy. While I know this, it is hard to deal with. It doesn’t relieve my stress.
There are times that she doesn’t recognize me! After eating, she has said that she doesn’t want to go back to the room until that man leaves. That man was me! This is hurtful - even though I know that it is part of the beastly disease.
In the Caregivers’ sessions , Fred has emphasized that we are dealing with the mental equivalent of a five year old. But, I see a difference. You can talk to a five year old and communicate. They usually will comprehend. Also, you can teach and they can learn. At least that is the experience that I had with my five daughters, when they were five years old.
Fred told us that a person with dementia cannot make logical decisions and they cannot learn new things. Also, don’t argue with them - for you will always lose. I agree with him.
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Marie’s vital signs are normal, yet she is severely handicapped. Marie frequently asks me what time it is, and if it is time to go and eat - quite frequently just after retuning from the dining room! She receives help, from the staff, getting dressed in the morning and help with her pajamas at night, They also give her frequent showers. But, she is stubborn and doesn’t want to cooperate. She would rather sleep. This is a big problem, and I have to intervene. Sometimes I am successful, while other times I just give up and tell them to let her dress herself, or go un-bathed, which is not always the best solution. This is the time for me to repeat the “Serenity Prayer”.
Disorientation is a big problem for her. This is a part of not remembering. This seems to be the case with all Alzheimer patients. We have two joining apartments, and this confuses her. She can’t locate her bedroom and her bathroom. I have to direct her. She no longer can distinguish the difference between the refrigerator and the microwave. There is no way that she could live alone. She would need one-on-one care, with the accompanying high expense.
Marie is often restless, and has started to “wander”. She will walk out into the hallway - and take-off. While her actions are startling and disruptive, they aren’t life threatening. I haven’t been too concerned because I know that many eyes are observing her. They would step in, if they thought that she was a danger to herself or others. Fortunately, most of her confusion occurs during the daylight hours. There has been one instance where she has wandered out of our unit at night. A CNA intercepted her and returned her here. Her doctor has prescribed a medication to diminish this
tendency, and it hasn’t happened again.

RCL - 1/26/09.