Profiles of Dementia Behavior and Personality Changes.

 

Dementia Profiles from my years as a professional care giver.

 


 

Your loved one may be very loving, logical, and cooperative now but this  can and often does change with Alzheimer’s, dementia, and cancer.  By giving you profiles from my experience, it will better prepare you for what you might encounter with your parent or loved one.

All the names and information has been changed to protect their identity except for the profile on my father-in-law. We were power of attorney for him. I was his caregiver so I feel telling his story may help other families in their similar situation.

I would encourage that as a potential caregiver, you search your heart and your personality to see if you can take care of your loved one realistically.  Can you do personal care such as bed bathes and bed pans? Can you clean and bandage a deep infected bed sore? Can you deal with a loved one saying cruel things in frustration? I will go into this in depth in future blogs.

 

Commander Freer in his last months.
Commander Kenneth Freer

 

Profiles of dementia patients as examples of patient personality behavior and changes.


 

Mrs A with severe dementia

I was working through an agency, and was hired by Mrs. A’s brother to go in for 4 hours a day to cook meals and help her around the house. She had lived by herself since her husband years ago. Her age was in the late 80’s and she lived in a upscale neighborhood.

The day I got there she answered the door and I let her know I was sent by her brother to keep her company. She ushered me in saying she was fine and didn’t need help.

Mrs. A studied in India and was proficient in Yoga. She could still stand on her head perfectly. She was taking care of herself on a personal level with clean clothes and hair. The house was kept up. On first appearances, she was doing fine.  The first few minutes she kept the conversation going well. Half an hour later, the real picture of her mental health became obvious.

The first day, after the first few minutes, it was obvious that she had severe dementia. Her refrigerator contained mostly jelly…jars and jars of jelly. When you were cooking for her, she would stop you and say you are done while the food was still cooking.She would unplug the vacuum as you were still working.  You were not allowed into her bedroom and the top floor.

Each day when I arrived, the dish detergent might be found in the freezer and left over food in the dishwasher. She could not be trusted to cook food properly or to put it away. She would constantly change channels and not remember she had watched the last one. The garage door had been deactivated so she could not drive her car. Long ago, she began leaving it without memory of where and when.  She would call a roof repair man to fix her roof, then call the police on him while he was inspecting it.  She often hid her purse and refused to pay for services. She told everyone she had lots of food, but that consisted of jelly for the most part.

Every day I came, she did not remember me, so I had to reintroduce myself. She would say please go away and I would tell her I was very lonely and needed company.  In the afternoon, she would say she needed to drive back to her home. I would tell her that this was her home. She would plead with me to fix the garage so she could drive her car. In her mind she was broke so she couldn’t buy groceries. I had to use my money to buy the groceries, then get a check from the agency.

When the social worker from the nursing home came to interview her taking 15 min,  she performed well. On the way out I asked the woman, to come back in 5 minutes and knock on the door. When she did Mrs A did not remember her.

A few weeks later, I was given the job of driving her to a dementia facility. The only way I could get her to go in was to tell her I was visiting a friend and wanted her company. I took her through the lock up unit into the charge of the nurses there. 

She did need the dementia lock up unit.  She was a danger to herself on many levels. She would have been hard to take care of full time at home, since she wanted you to leave after a few minutes and was very adamant about it.

 

Mrs B

I worked for her as a private care giver performing housework and taking her on errands. She was going blind from macular degeneration. She still drove her car locally which was dangerous and her golf cart. I have no idea how she kept from killing someone with her lack of eyesight. She refused to consider giving up her drivers license.  It was not until the DMV gave her a physical driving test, which she flunked, that she was taken off the road. She was so very independent that it was difficult to help her. She was sharp to the last year or two of her life.  Her family did their very best to give her the life she wanted in her last years. In the end, she resided in an independent living facility with a private care giver full time.  She died there in her room with dignity and peace. They had financially set up things the right way. They were a wonderful family who sought to make her death wish a reality.  Not all families have these choices with little money. Not all families have the resources to keep their loved one at home. If the patient is a danger to themselves or others, there often is no choice either. There are many patients who could die at home if resources were made available by insurance companies.

 

Mr and Mrs C

Money does not guarantee your fate.

There were rich with old money. I was one of the help hired by an agency to take care of Mrs. H who had dementia and couldn’t communicate well. Mr. H did not want us in the house. He had been trying to do the care giving himself but it wasn’t going well. She wandered around all night, becoming exhausted, then falling.  He was angry he could not take care of her.

When the job was started he was mean and rude to all of us. They had grown up with servants, black help, which made it all the worse. If you were the wrong color, obese, or in his mind unfit, you were not allowed to use their coffee or the ice cubes. He sent many a girl away not knowing anything about her.

After a few months, he got better and preferred me to the other help. We ended up taking care of him as well without being paid to. His driving was dangerous and our life was at risk in the car with him. He treated me with more gentleness and talked about his wife and the pain of seeing her dying. He was rich but could do nothing to save her. It tore him apart. He began leaving large checks around and he allowed his son and daughter to take over power of attorney for legal and health matters. That might have been fine except for the ill relationship he had with them. To be fair he gave them a hard time overall. Mr. and Mrs. C were happy being cared for in their home. I took Mr. H to his club meetings and church. They lived around many close friends. They had to money to stay at home and be cared for.

After many months, the children talked him into a independent living facility far away from friends. Within one month the house was sold and it was done. He resided on the third floor where people were in great shape still. She was placed on the 3rd floor where you are either dying or have dementia.  At this point he had no say on any of it.  They hired me to make their life easier in this independent living facility. I fed her, took her for rides in the wheel chair and made life brighter in a ward that is hard on the heart and mind. My job with Mr. C was to keep him out of trouble and out of the way of the staff…to keep him in line.

After almost a year, Mr. C made enemies with the staff. He could be a very rude man at times. He did not want to be ordered to take a shower at a certain hour on a certain day. He did not like the care his wife was receiving, rightfully so from the staff there. He made lots of waves.  At a certain point, he went down to the dining room wearing only his depends. That got him sent to a institution that evaluates your mental health. I was there when they gave him the test. He could not hear properly and flunked the test.

The facility then refused to let him back into his apt. They forced him to be placed in the lock up unit which he did not deserve. His wife had her own private room on the 3rd floor. They were on the same floor but separated. He could see her only with supervision. It was totally unjust treatment for him. I am not even talking about the shoddy treatment she received from the staff.  They refused to allow any one to see him for several weeks. So he was locked up, separated from his wife, drugged into stupor and died within a month.

The daughter who hated her mother then ended my job saying my care was keeping her mother alive.

One month after I was let go, her mother died from choking on her own secretions.

Her father died one month later from pneumonia acquired from the staff. Several died as well.  In the end he died with no rights. The nursing home and his children had taken them all away. 

Money did not give them a better life in the end…..it could have been much different. What I watched and could not stop tore my heart in two.  The way he died caused depression for awhile. It still makes me angry some 14 years later. If you don’t cooperate with the nursing care system, it locks you up so you can’t protest. It drugs you so you are obedient and tow the line. This treatment will cost you or the patient around $7000 or higher depending on the state and the facility. There is a difference between calming someone and drugging them into a stupor. There are some who need the lock up unit and there are some who are put there for the facilities convenience.

Mr. C was not physically aggressive nor combative. He was not severe enough to be placed in the lock up dementia unit. He was at the level of needing assisted living which is level 2 in many facilities. There was enough room in Mrs. C’s room on level 3 to accommodate two beds. After 50 some years of marriage, that would have been the right and ethical choice.