More Dementia Profiles for Education and Review.

 

More Dementia Profiles for Education and Review.

These profiles will give you an idea of the changes you may see in your loved one with dementia.


 

The Commander, Kenneth Freer

I offer this in-depth profile from our family in hopes it will help others going through this long journey.

This is the profile for my late father-in-law who died this past April. My husband and I got married late in life and from day one, he was in the middle of our life.  I loved my father-in-law but he was more difficult than any professional care giving job in my experience. He was the 3rd lifer I had taken care of and the most challenging. Military men stay regimented into the grave. They demand  things be done on time and done their way. Highly  regimented and disciplined they do not like waiting.. period. If you are on time, not late, you are in trouble. They want things done their way even when lost in dementia that makes no logical  sense. Often they are not good with male care givers, treating them as under their command. He was a pistol. On his gravestone it states, “I did it my way!”

His dad made $5000 a month. In 2004 his father was contributing to political ads but it was within reason. He was a, ” What part of NO don’t you understand!” kind of man. Terms were his terms with no give.  He was the commander to everyone.

In 2009, his dad had a heart attack. He was 85. He was expected to have months of recuperation.  We moved to a house where we could take care of him, giving him his own section of the house with plenty of room. He still drove then. He drank heavily and while recuperating from heart surgery, began heavy drinking again. He fell and hit his head causing it to bleed. He took his car to play golf about the 4th week. When we asked him to drink less, he moved out on us getting his own apt. No one was going to tell him how to live his life.  That was California and it was too expensive for us to live there. We had moved to that house to take care of him. The lease was up and the house was twice what we could afford. No housing there really fit into our monthly income so where to now. His dad was determined he did not need anyone or any help!

We moved to Nevada. As soon as we left, dad began to get worse with his money. He could play 9 holes of golf and shine it on with his doctor but was making destructive decisions with his money.

 So after two years in Nevada, he convinced us to move back. Once again we rented a house so he could have his space but we could help him.  He again immediately rebelled against slowing his drinking down, with falls weekly. He wanted to eat sugar constantly rather than real food. He would not let us have any information on his health.  He was now involved with scams of every kind, sending checks to them. He still was driving. We had his mail stopped but he went to the post office himself to get it started again. He would sneak out to mail the checks and cash.  When the lease came up for renewal, he moved out on us again into his own apartment.  He would not listen to anyone. His defiant disposition got worse.

We then moved to TN in Dec of 2014,  where my sister had property and it was beautiful and rents were reasonable.   Not long later, his bank manager called.  His father was taking out huge sums of money and sending to scams. He had gone into the bank to cash a $500,000 fake check. Every day he withdrew money to send to these people. We sent in the police, adult protective services, and friends to talk to him and explain that this was fraud. He refused to believe it.  He would call us after he had sent the money away. I am going to be rich, listen to this letter. Its real, I know it is. It was obvious, he had lost his ability to reason. Yet he could still play golf and fool most people.

 

By the end of Jan 2015, he was broke having sent them his entire monthly retirement check. He had no money for food.  He had bounced several checks including his phone and utilities. He had taken out a nasty pay day loan on his car to pay them more money.   He was obsessed, even letting them them talk him into changing his phone number. Even though they told him not to tell any one, he told us. That is when we took drastic measures to save him. We had his mail forwarded to his grandson living close. We got on the phone with his permission changing his phone number, blocking all calls from 800 numbers and toll free numbers. We had his grandson go to the house and physically take the bags of junk mail and numbers he had for these scam artists.  We then told him for us to help him, he must turn over power of attorney to us. He must put our name on his accounts so we could see how to help him. With the help of his bank manager, we did get power of attorney.  We told him he was going to come here to live with us or his own apt with supervision. He agreed.  We took over his health care as POA and his legal care.   His money was gone then, all of it, other than what he would receive monthly. 

 

Thus begun the next step in a nightmare journey that tore apart our life.  We moved him into our home with one bathroom and steep steps. He was up and down all night long. He refused to hold on to the rails when using the steps.  He complained about my cooking and would be nasty to my husband. The two had never gotten along.  This caused pain and conflict constantly putting me in the middle.  After a year, the situation was unworkable. We moved dad into an apartment connected to a restaurant. I went over every day to give him medications and make sure he was eating well. It started at 4 hours a day. He could be trusted with one dose of meds at night.  His white count, red count and platelets had been depressed for several years. The doctors thought it was because of the drinking. When we bought him back here, I weaned him off alcohol, so after some months he was sent to an oncologist. We then got the diagnosis of chronic leukemia with 6 to 9 months to live. He had shown little symptoms up to then, still playing 9 holes of golf several times a week. 

 

Soon after, he got bad enough he couldn’t be trusted to take any meds without supervision. He got day and night confused. I then began full days.  We could not get any help that would show up on time or show up period. He acted  out badly with my husband offering him his fist at times. I became the only one who could handle him. 

He continued to digress both mentally and physically. In Jan of 2018, it ended up 24 hours.  Physically the leukemia was taking him down.  He fell three times in a week, refusing my help or anyone that tried to assist.  He weighed 210 pounds and was a big man.

Infections began taking over from the leukemia and he was sent to the hospital. There he fought the nurses and fell hurting himself significantly.  I could not handle him anymore. He was supposed to be admitted into the Veterans hospital but because of his physical outbursts, they refused him. No one would accept him other than one dementia lock up unit nearby. He was transferred there, where he fought the nurses there. Three more falls occurred there in the first week. He could not support himself or walk but refused to stay in his wheel chair. They gave him drugs to keep him down. 

After three weeks, he completely lost his ability to swallow. They tried liquid food but he refused to eat period. He refused their thickened water as well. His blood counts had crashed. He was placed on hospice with morphine.  He died two weeks later of dehydration. 

I fell apart with it all. I got sick with strep throat and bronchitis that did not respond well to antibiotics. It has taken me almost 5 months to feel normal again. The effect of his care strained our marriage and created huge problems. Our marriage survived his dad but not without costs to our health and nerves. I am not sorry we tried to save him. We did give him life the way he wanted up to the last several weeks. If he had not been a physical risk to others, his last few weeks would have been so much more gentle. 

I tell you his story, our story,  so that you can see how difficult care giving can be. It is not for the faint of heart.

Many of your loved ones will not be this difficult nor uncooperative or violent. This is not uncommon either. Each story is different from beginning to end, the course with no chart. You are moving into a path with no certain outcome.

I pray your experience is less traumatic than his father’s. You love them even during their most difficult times. The pain is unbearable it seems at times, and unending.  You have no idea when your life will ever be normal again.  Your  whole life revolves around your loved one in one way or another even if they are being cared for in a nursing home.

The commander during happier times.
Happier times when he was still functioning mentally.

Dementia profiles for education for families serves as real life examples of care giving from experience.


 

Mrs D

 

She was blind but had still managed on her own until the next door neighbor hit her. It was not the neighbors fault. She was vegetarian and counted out the exact number of almonds she felt was adequate for her protein level. She had not had a cold in 20 years, so her family stated. She however, did not get along with her family, considering her strange. She got severe anxiety and panic attacks.  After being hit, she could no longer take care of herself.  Most of the caregivers could not handle cooking for her, being a vegetarian. She was of modest means. In the end her family moved her to a small community living situation where the main people did not speak English. She was not allowed to eat vegetarian any more. She died within a year of that move. I have no idea what she died of since she was healthy when living at home. She could go through work on her teeth without any anesthesia or pain medicine.  A gentle soul who just wanted to live her life simply.

 

 

Mr. E

 

He was a retired commander who had lost his wife in an auto accident, was mentally fine but physically pretty bad off.  He did not talk much and did not allow us to talk unless spoken to.  He would sit in his chair for hours not saying a word, staring at a turned off screen. Their room still had her clothes in it. The bathroom, her bathroom, was exactly as it had been when she was alive. They had been married 50 years. The silence drove most care givers crazy. I was fine, I just read books in between chores and meals. He had to be assisted in the bathroom. In the end, long  after I was gone he died at home very gently, I heard. His family did their best as they saw it. They did not take care of him personally because he and his son did not get along well.  He was hypercritical of his son.  His son wasn’t easy on the staff. He only allowed his father a certain diet, even though he was not overweight. The diet was strict, unreasonable, and took most of the joy out of eating. The son was not pleasant to be around. It was a difficult job in many ways.

 

 

Mr. F

 

Mr. F was in a nursing home from a fall. He had been a well known architect who had designed most of the buildings in the area when he was young. He was a well off man with influence. He was in his 80’s.

My job was to go in and keep him company for 5 hours a day.  The job sounds like a piece of cake…right. Mr. F was stuck in the memories of his business days. Each day when I walked into his room, I was either his dead wife, his girlfriend, his business partner or a friend. I never knew which one I would be until he called me by name. For the next 5 hours, I would go by a script that only he knew. If I was his business partner, he would ask me if I had gotten permits or where the project was at the time. I would give very creative answers to keep him happy. If I were his girl friend, he would ask me when we were going on a specific trip. I would ask him to help me plan it. We could go on for hours doing that.  I was his girlfriend in his eyes and mind. I got pretty quick going along with his script including his imaginary dog.  When I left, I felt like I was developing multiple personalities…but he was one of my most interesting jobs. The staff constantly left meals in his room with no supervision. Twice I found him choking. When I raised cane with the supervisor, I was told I would not be allowed in again if I didn’t keep my silence. We were private  caregivers in their facility who were not welcome. They had the right to kick us out.  I opted out of the job rather than keep my silence on a practice that threatened his life. My supervisor wanted to keep that job so that was the end of it.  Often you are told to ignore the violations going on right in front of you. Violations that you the family never see or know about.  Caregivers see them and to keep their jobs, stay silent. You will read in the future about what goes on in these facilities that  the families never see.