Deflection

It has been over a year since I moved in with mom, and it has been an experience, but not all negative, Mom has made a tremendous change in her demeanor. When I got there, she was all defensive and combative, and now she is more complacent, but still stuck in her ways. As a matter of fact, she is more affectionate and appreciative than any time in my life. Without trying to brag, I feel that most of the changes has come from me, a family member, being with her everyday. It has made a big difference in her life.

Since the early 1990s, mom has lived alone. Although mom has always been independent, she has had full control of her life in the past thirty years. Now that she needs help with her day to day life, she does not want caregivers in her house and taking care of her. In her own mind, she feel that she can take care of her house and herself. But, with dementia, she cannot see that the house is more than she can take care of, and she need the caregivers there to take care of her physical needs. Although all dementia patents will not take showers or baths, she still needs to stay clean, and, in her case, fight off unitary track infections. Although a year ago, she would prepare some of her meals, she now demands that others prepare her meals. So, despite her comments and feelings, she needs the caregivers.

When mom was in grade school, an other grade school girl was abducted and never seen again. She has mentioned this girl’s abduction through out her whole life. When I moved in last year, she had all of the outside doors, even with caregivers there, locked and the doors to her bedroom. Because of this girl’s abductions, she would come up to me, even a year ago, and state that I did not know what she was going through. As a side note, this girl was my cousin’s wife’s sister-in-law’s sister.

A year ago, she would lock the outside doors to keep the caregivers out of her house. But, as of now, the dementia has deteriorated her brain to the point that she is no longer looking caregivers out of the house or making sure that every door in the house is locked at bedtime.

As with many dementia patents, they get to the point that they can no longer follow a plot in a book or on TV. This leaves her to watching Bob Ross painting scenic paintings, a travel channel, or nature shows. As for me, I have seen enough Bob Ross episodes that I could start painting on my own. As mom was watching these shows, I would come over and sit be her. As time went on, I would put my and on the top of her thigh. Then she started putting her hand on my thigh. And, now, she will put her head on my shoulder. Despite the fact that most people will stay away from people with dementia, the truth is that these people can still love and they need people around them.

It is true that dementia starts out slow and people find them forgetting things as a part of common life. But, as the dementia get worse, they came become more aggressive to to be around that it comes to the point that they start to drive away their friends and family. This is sad. But, as the forgetfulness get worse, the person is finally diagnosed with dementia. Although it would seen like a diagnose of dementia would be the understanding of what was going on in the person life, it does not bring friends and family back into the life of the demential person. Again, this is sad.

As far as being a caregiver is concern, the biggest problem is that people are giving advices without spending time around the person with dementia. Although these people are well meaning, it comes to nothing but pure aggravation for the caregiver. As I have been informed by people that work with dementia everyday, the awareness of dementia is not getting out to the general public. This is a basic frustration for the family caregiver; a lot of well meaning people that know nothing about the topic.

As I was growing up, there was the following statement from the Indian community: do not judge the other Indian before you walk in their moccasins. Although I do not know if this statement was politely correct, but it does get to the point. Do not judge a person with dementia until you have a chance to understand where they are coming from with this horrible disease. Unfortunately, if you get this disease, you might act the same way. Or, maybe this is the problem with people are making poor comments, they never want to see themselves with dementia. Unfortunately, this is probably true, but it takes a caring person to look through the disease and understand that the person with the disease needs love and caring.

A person should also not judge the caregiver until they understand what the caregiver is going through. This is a horrible disease and someone needs to be there to give them love and support through the disease. The caregiver needs love and support as they work with the dementia person, since giving care to a dementia person is just drains the life out of the caregiver. Then a well meaning person comes up and states that the demential person would be better off being in a dementia ward of a nursing home, when it is obvious that the dementia person feels that they would be loosing their independence and fight to get out of the facility. The caregiver feels that we are doing the best with the circumstances that have been given us and, unfortunately, the well meaning person is not helping the situation.

I remember after coming into high school English class one and am Mrs. Baird asked if we know the difference between a freshman and a senior. Obviously, we look like where was this question going. A freshman comes in thinking that they know everything and a senior goes out know that they know nothing about high school. This statement is so true to life. I find those that know nothing about dementia came in knowing everything there is about dementia. But, as for the caregivers is concern, these people come on so strong that the caregiver does not even get a word in edgewise, and the caregiver cannot wait until they are gone. Just go away. As for those that know the topic of dementia, they are the greatest support for the caregiver. They talk for hours giving the caregivers the support that they need to work with the dementia person.

As for a field civil engineer, we are taught to take an open mind and assess the issue at hand, analyzes the issue, and follow up with a report. For example, I was called one time by a person that had been under a bridge deck and they reported extreme deterioration of a prestressed concrete beam end. I thanked the person and drove out to the bridge and with an open mind I reviewed the deterioration of the concrete. Since I had taken prestress concrete in college, I knew how the beam performed, and I make an assessment on the beam. I then went back out to the office and wrote an email on the condition of the bridge. When I first moved into mom’s house, I moved in with an open mind, and I read at least two books on dementia, I started attending support group meetings, talking to people with knowledge about dementia, and writing about my observations. This is exactly how taught in college. But, dealing with well meaning people can be very difficult.

As for people who have little to no knowledge of the topic, they are going to come on strong and not going to listen to the knowledge that you have obtained. This it is nerve racking for the caregiver. The 24/7 caregiver knows the dementia person better then anyone else, they know what they need, they have taking the time to study dementia, they have listened to the people that understand dementia, and there are those that are belligerently tell the caregiver that they know nothing about dementia. These people are so hurtful. Going back to my prestress beam example, these are the people that would receive a call from the person that was under the bridge and review the bridge report finding out that the bridge was inspected five months ago, not going out to the bridge to see if the condition of the concrete had changed since the inspection, and do nothing because the bridge had been inspected and a repair project was to start in eight months, and then the bridge deck settles eight inches three months later during morning rush hour. This does reflect onto the well meaning people that never come to visit the dementia person, but forcibly tells the caregiver what is going on with the dementia persons. The caregiver does everything correct and is not appreciated by the well meaning people. It is a never ending slippery slope of hurt for the caregiver. These well meaning people are flat out wrong and they are just filled with hurt.

For those that study the Bible, the book of John covers the same the same issues that the caregivers are going through with well meaning people’s comments. When Jesus was questioned about his religious believes, the pharisees were belligerent.  If you read the words in the Bible, the Pharisees uninformed on Jesus’s believes and they were not going to learn, since Jesus was just wrong.  I try to state that I look at things from the real world, and that means that I will try to look at the point of view on both sides and draw my facts from me education and experience. Regardless of what Jesus was teach, the point is that the Pharisees should have been listening and learning what Jesus was preaching before they made any conclusion. Although I try to understand the other side, I will still dismiss the other rhetoric that I do not believe in fast.  But, with human nature, people do not take the time to understand the world that they are living in at the time. Unfortunately, for those that are suffering from dementia, the general public is not aware of the issues and frustration of the dementia caregivers. And, as with the Pharisees, the general public comes across as if they know everything about dementia with only minimal references to pull from to obtain their knowledge.

There is another side here that is even more difficult for the caregiver to see. When a well meaning person comes on strong and/or never around, are they staying away because they cannot stand to see the dementia person in their current condition? This is a real strong possibility, but the caregiver see that actions by the well meaning person as aggression coming at them. Well meaning people could see themselves with dementia in the future and they do do not like what they are seeing. But dementia is not contagious. From what I have read, it seems like the only common link in dementia is blood type. With people with Type o blood having more white matter in the brain, it seems like they are less likely to obtain dementia, but more studies are needed to prove this situation. Some people do not know how to approach people with dementia, and even I have an issue with this topic. The problem with me is that I do not know that stage of dementia that they are in, so I do not know how to approach them. A few months back, I found one of our family’s tenants that live in the basement of the house that we are living in as I was growing up at Respite. Although I was taken back, since I had not seen him for probably forty years, I asked his wife about the stage of his dementia and if he would be receptive if I talked to him. She told me that he was cognitive and he would entertain a conversation. So, I spoke to him and things when fine. The point that these dementia people need to engage in conversations, even though it might be best to get a little background information before you talk to them.

Why is people not coming to the 24/7 caregivers and not asking them for support? This is the hardest question in the world to answer. After all, the 24/7 caregivers are human and they need their support. Is it that they cannot stand to see the dementia person in their condition? I find that since I moved into mom’s house, there are so many items that I could work on, but the support people never show up to ask what I need to help with mom’s care. Is it a sign of the times? That is a good question. Everyone still remembers what nursing homes were like twenty years ago when they had a stable staff, but today they have a large turn over rate and the care is not as people remember. Although the 24/7 caregiver needs support from family and friends, the sad truth is that they are not getting it from the people that they thought that they could depend on. It is a sad truth. In my case, I could have built my new house, and I could have turned my back on mom’s needs. But this is not how I was raised. It has been stated that our parents took care of us growing up and now it is our turn to take care of our parents. Or, in my case, after I broke my arm at the age of six and ended up in the hospital for a week, my mom’s mother was at the hospital every morning when the hospital open for visitors. Yes, the hospital was closed all night to visitors, ever six year olds that missed their families. It was hard on me. My grandmother spent days with my aunt that pasted away at the age of forty-three with a hole in the ventricular septum of her heart. Children are not to die before their parents, so my aunt’s death was hard on my grandparents, along with the death of their nine-year-old granddaughter from leukemia. This is what families do; they are there for their family members. So, to becomes obvious that I would be here for my mom. My grandmother’s presents in the hospital was so important to me.

Mom always stated that she wanted to live to be one hundred, so she took out long term care to ensure that she would get good care until she was one hundred years old. The policy also protected the assets that she had worked so hard to achieve over the years. As I see it today, mom’s think was that she wanted to live comfortable until she was not around. Regarding the funds that she had earned over the years, although she wanted to protect those funds, she also wanted to use those funds in order for her to achieve one hundred years old. In other words, she wanted to live to one hundred comfortably even if it took her if it used all of her funds.

During the end of the summer, I stated to notice that mom mood was improving, and it seems to slowly improve. Without trying to take credit for me being here everyday, it seems like the consistency is helping with her mood. This includes that she is happy, appreciate, but she can be as obedient as ever. As the sun was getting lower in the sky, this was making you hyper vigilant. When driving, she was pointed out every issue in the road. It got to the point that I cannot take her any place in the afternoon. 

Things are changing in her day to day life. She gets up in the morning, eats breakfast, and then lays down and fall to sleep again. Her morning are basically watching TV and siting looking into space. In the afternoons, she comes alive, and she is totally bored.  She wants to go home. A fictions place where there are lots warm and people, as they remember in the home that they grew up in years ago. 

Now for the big question, what does the future hold for mom? For certain, the brain will continue to deteriorate. As the brain shrinks, there will be folds in the brain and there will be plaque. The speed to the folds in the brain and plaque probably depends on the person. It is great that she has a docile attitude. When I am there, it is easy for her to put on a smile. But, as we know from the disease, it will continue to take a toll on her physically. Since mom is not to this point yet, it is hard to predict her walking, going to the bathroom, and/or talking, but they will all have an effect in the months to come. It is so sad for the offspring and those that still have clear memories of when they were vibrant. at least mom still has her smile. The road of dementia for a love on seems like it last forever. Although some may want to compare dementia to other disease like cancer, but dementia takes the mind and the physical body. It leaves permanent images of the love one on the brain forever.