Category Archives: diseases, ugly monsters

Bill Tells All He Can

 

Bill talks as well as can be expected

 

In September, 2017

I’ve asked Bill what his world is like, because it could help other people who have loved ones with dementia. It may also help others who already have it what they could expect for themselves, and their loved ones.

Now, some may not go through the same steps in the same order, some may have none of the view of their unfortunate condition, but this may help everyone with dementia. His first answer was that it is none of their business; let them find out for themselves.

 

October, 2017

Bill had been declining on a regular basis. The time had come that he wanted to tell what was going on in his own mind. By then, he could mostly talk so that it was understandable but his sentences were still broken. He was always soft spoken and kind. Never would he get angry and push people away, never would he get angry or annoyed with me.

Since he has always had trouble finding the right words to describe how he is feeling, I thought that if I helped him find some words it might help him, he would be able to express himself.  Therefore, I asked him if the world looked normal to him

He said that it didn’t but he just didn’t know what he is supposed to do anymore. Bill also replied that he didn’t feel as if the world was normal, but I don’t know how to…. no words were able to get out after those words.  I then asked him if the world seemed upside down to him. He thought for a few minutes, looked at the floor, then at me and with tears in his eyes, his answer was yes, it kind of did seem upside down.  Once again, I asked him with tears in my eyes if the world made any sense to him at all. It took him a few minutes to answer that question too. …  His answer was that nothing made any sense to him any more.

Those were his answers. These remarks were made sporadically…. I don’t know what I am supposed to do. I asked if he wanted to go for a walk. He would always want to know where we going to walk to. I told him that it was just to the office and back. He would be okay. Today I asked Bill what his world feels like to him. At first, he said that it was none of their business. Then I asked him if his world seemed to be upside down and if it makes him feel lost. He finally answered that it was upside down and he didn’t know what he is supposed to do. I told him that I only could guess how that felt, but I thought that he was brave being in that kind of world and functioning anyway.

Continue reading Bill Tells All He Can

Feelings

This is another entry about the feelings my husband hides within his heart and memory. He is weighed down with dementia and at times, he believes he is carrying this burden by himself.

He’s not alone, for this is a two-person journey from beginning to end. What I’ve seen in Bill is the sadness of losing each skill, each thought, each piece of him to oblivion. I’m not morose, or a negative person, but this is a sad condition of the mind. Dementia is a condition of the mind that two people have to deal with. Each must adjust and help one another cope with the stages that must take place.

My mother had Alzheimer’s and I watched her go downhill for 16 years. I took care of her every need for those years. She did not have to be alone going through the process of memory loss alone either. When she was sick and dying, Bill was diagnosed with Dementia. Sometimes I forget what really is happening to the person within. When you are with a person with such a condition, perhaps every day, you don’t see the gradual change. Others do see the larger picture and see the downhill slide.

To those who take care of these ones, it seems as if all of a sudden that ugly monster has shown its’ face and this decline appears so suddenly that it takes your breath away. To me it feels as if it has been sudden that his thoughts and speech have trouble coming together, if at all. I remember the thoughts of his heart wanting to come out, but they were stuck. The thoughts were there, the memories are there, but the words are not.  

He struggles to get the thoughts out and it hurts me to the point of my heart breaking in two. As he tries to form the words or remember his thought, the look of desire in his eyes I know that he has something important to say to me. The unwillingness of his mouth to form the words that have already gone into obscurity and as the thought itself entered the doors of extinction, we look at each other helplessly. I can only hug him, tell Bill that I love him, and it’s not his fault it’s the monster called dementia. Then nothingness fills the void of silence.

 Sometime in Jan or Feb of this year, his son called us. I do not remember what the objection was, but JR was mad at me and he told me that he was very angry with me. He thinks that his dad should be down there with him where he could care for him properly and he could see his grandchildren. I started to cry, and I told him that he has a right to be angry and it was OK to be angry with me. His dad found his voice, grabbed the phone and let him know a few things that his son was not aware of. Bill reminded him that I was his wife and JR had no business getting me upset.

That was only one small thing that we have to work with. Bill has to remember that his son has not had to deal with older people and never with Alzheimer’s and Dementia. It is a shock for him to see his dad like this, and he doesn’t see it as bad as it really is at this time. 

Thankfully, there is no one else on bill’s side of the family that we have to hold their hand and deal with this too. When you look at this, it comes down to the importance of the relationship that Bill and I have built over the years that is getting us through this. My sister said it all when she said that when you get old, all you have is your family to take care of you.

That’s the truth isn’t it? As for us, we’re just plugging along like every on taking it one day at a time, and as time passes you too will feel the pangs of tomorrow. Then it will be your turn to  just plug along as the others do. 

There was also a sparkle, but that’s another entry for another day.

Retirement ends

End of retirement phase

 

Therefore, another phase of our lives ends after retirement. We had to sell our beautiful four-bedroom home on five acres. One reason was the medical bills that stacked up leading us to bankruptcy which put an end to our good credit we had at the time. Alzheimer’s had resided with my mother for 15 years by now. Dementia had been diagnosed in my husband Bill’s life. No more trips, no more dropping everything and going somewhere. Yes, the carefree phase of our lives had slammed the door quickly.

We had entered a new phase. It was one of high medical debt, and maxed out credit cards. There was no end in sight to this new phase either, especially after I fell and broke my shoulder. Necessity left me with five surgeries in the first year alone. My mother had to be moved to a nursing center and I still needed to be with my mom often. My mom needed me in these last of her days, even if she didn’t recognize me. I had to be sure that she still was taken care of properly. I had to take her laundry home and wash it because her clothes disappeared when they went to the laundry there. Dementia in the first stage was waiting at home for me.

It does sound like I’m whining, but I’m not. My mom died a few years ago. My husband’s dementia is in the second stages, but I don’t mind. Our bills are under control and we now live in a one-bedroom apartment. I wouldn’t say that life is good, but for me it is. I still have my husband home with me. I rejoice each day that we are able to communicate and be understood by each other. That is a joy in my life.

In the early years of our marriage, he had to care for me. He did it so lovingly and never complained. He was there for each medical emergency, and each surgery. Now it is my privilege to care for him. I hope that I can do that with the same love and gentleness that he has done for me all these years. So now begins the final phase of our lives and I will still thank our heavenly father for the Kingdom we pray for, the Kingdom that will rule over the entire earth, (Rev 21:4) and tells of no more death or tears.

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Dementia and/or Alzheimer’s?

Have you ever wondered if there is a difference between Alzheimer’s and Dementia? Does it even matter? Why should you care?

A few specialists say there are no distinctions and they utilize both Alzheimer’s and Dementia equally. Some specialist’s find there are a couple of contrasts yet say they all end up in the phase of Alzheimer’s so it doesn’t make a difference what it is called. In the two articles in Lifescript.com, and ALZ.org there are varying opinions.

Alzheimer’s sickness is the most widely recognized reason for extreme mental deterioration (dementia) in the elderly. It has been evaluated that 30% to half of individuals more than 85 years of age experience the ill effects of this condition.

Alzheimer’s starts with unobtrusive indications, for example, loss of memory, for names and late occasions. It advances from making the same inquiries again and again to trouble learning new facts. In this stage, they forget to pay the bills, and lose the worth of a dollar by being scammed. Further stages are a few eccentric behaviors some depression in varying degrees, they lose the concept of time; there is no recognition of that fact.  These steps are not always in this order and usually take years to just go through these stages mentioned. Through the span of the illness, the individual step by step loses the capacity to complete the exercises of regular daily existence. They have an inability to recognize their friends and even their seldom seen children are attributes of modestly extreme Alzheimer’s. In time, for all intents and purposes every single mental capacity comes up short.

See more at: http://www.lifescript.com/wellbeing/non-alzheimers_dementia . See more at: http://www.lifescript.com/wellbeing/a-z/elective treatments  http://www.lifescript.com/wellbeing/a-z/elective treatments. This data is from lifescript.com

Dementia-Symptoms: The very first thing Difficulty recollecting late discussions, names or occasions are regularly an early clinical indication; unresponsiveness and gloom are likewise frequently early manifestations. Later indications incorporate inhibited correspondence, misguided thinking, bewilderment, disarray, conduct changes and trouble talking, swallowing and walking.

Modified rules for diagnosing Alzheimer’s were distributed in 2011 prescribing that Alzheimer’s be viewed as a gradually dynamic cerebrum sickness that starts a long time before indications rise.

Mind changes: Hallmark variations from the norm are stores of the protein piece beta-amyloid (plaques) and bent strands of the protein tau (tangles) and additionally confirmation of nerve cell harm and passing in the cerebrum.

Take in more about Alzheimer’s http://www.alz.org/alzheimers_disease_what_is_alzheimers.asp  Alzheimer’s infection. Above is the utilization of the two utilized conversely? This data is taken from Alz.org

I watched my mother for 16 years go slowly downhill with Alzheimer’s. I took care of her, seeing to all of her needs. She did not live with us, but I watched her closely until the very end. Now, I watch my husband quickly slip from dementia into Alzheimer’s. So they both do end up in the same place but the ride is very different.

Alzheimer’s may seem dramatic at times to those who are the caretakers, it can be and I’ve dealt with that too. Each time there was a turn in my mom, it was a sad thing. She may have lost her friends names. It was embarrassing for her and she began to stay home more. I moved her from Denver to Carthage, MO and I placed her in a nice assisted living facility only a few miles from me so I could visit her daily and spend a few hours with her each day.

In dementia the distinctions are much more difficult, they are significantly heart wrenching. Dementia has a face that flies up repeatedly; it’s ugly, destructive and rears its head with more destruction than the last time. This malady may ransack your friends and family who are unfortunate victims of this vicious and destructive dementia. It steals their fundamental abilities one skill at a time. Understanding of words and communication disappear silently. Ability to follow instructions becomes impossible. They don’t recognize a common object even if they look at them and hold them in their hands there is no recognition. Dementia steals their lives and in the end, Alzheimer’s takes it.

The saddest day I had with my mother was the point at which she inquired as to whether she would forget me as well. I couldn’t remain there and mislead her. With tears in my eyes, I disclosed to her that she will, however I will feel it more than her since she won’t recollect me yet I’ll recall her.

The saddest typical day for a man with dementia, I can just figure. Each time Bill slips, it’s been more devastating than the last. From all out wood appearances it seems he struggles with all of life in general. He lives in a world that is upside down and this continues to be anything but comfortable; additionally this experience is something that he can’t control. Much the same as the specialists over, a few people accept there are no contrasts between the two conditions. If you would like to know the answer to that question, continue reading this series of “The face of dementia.” Whatever they lose, the caretaker will need to figure out how to manage it. Each time the appalling creature demonstrates its face; you have been innovative and figure out how to coexist with it.

So decide for yourself whether Dementia and Alzheimer’s words are interchangeable. Listen to my observations during my mother’s Alzheimer’s and my husband’s Dementia.

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Now the Final Phase

Phase

So another phase of my life ends. We had to sell our beautiful four bedroom home on five acres. One reason was the medical bills that stacked up and the good credit we had at the time. Alzheimer’s had resided with my mother for 12 years by now. Dementia had been diagnosed. No more trips, no more dropping everything and going somewhere. Yes, the carefree phase of our lives had shut the door quickly.

We had entered a new phase. It was one of high medical debt, and maxed out credit cards. There was no end in sight to this new phase either, especially after I fell and broke my shoulder. Five surgeries if the first year alone. My mother had to be moved to a nursing center and I still needed to be with my mom often. She still needed me. I had to be sure that she was taken care of properly. I had to take her laundry home and wash it because her clothes disappeared when they went to the laundry there. Dementia in the first stage was waiting at home for me.

It does sound like I’m whining, but I’m really not. My mom died a few years ago. The dementia is in the late fourth stage, but I don’t mind. Our bills are under control and we now live in a one bedroom apartment. I wouldn’t say that life is good, but for me it is. I still have my husband home with me. I rejoice each day that we are able to communicate and be understood by each other. That is a joy in my life.

In the early years of our marriage, he had to care for me. He did it so lovingly, and never complained. He was there for each medical emergency, and each surgery. Now it is my privilege to care for him. I hope that I can do that with the same love and gentleness that he has done for me all these years. So now begins the final phase of our lives and I will still thank our heavenly father for His Kingdom. The Kingdom we pray for, the Kingdom that will rule over the entire earth. (Rev 21:4) Tells of no more death or tears.