Category Archives: love

Feelings

This is another entry about the feelings my husband who is weighed down with dementia feels. 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 sudden 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 attacking again. 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 everyone else is and taking it one day at a time.

 

There also was a sparkle, and I loved it. That’s for another blog,

 

Remember

The word “Remember” can invoke many thoughts to each of us. You may even wonder where to begin. I’m sure that each of us could write a book on our own memories. I’m only thinking of the first thing that this precious word makes me want to write.

I remember the reason I fell in love with my husband. We lived in Colorado at the time and I remember the first conversation I heard him have with his mother. (His end of course.) The gentle tone in which he spoke to his mother reminded me how children are supposed to obey their parents. It made me remember that the reason we obey is because we love and respect them. He’d laugh each time she spoke of what “Muffin” (her dog and only companion) did that amused her that week. She talked about any visitors she had that week.

He spoke with deep concern about how she was doing and what needed to be done to her house. It was older and was in need of much attention. Bill’s two brothers helped as much as they could. They talked for about an hour and sometimes longer. This impressed me as them having a close relationship. This might spark a flavor of “mama’s boy” to some, but he was no “mama’s boy.”

One brother lived in Germany at this time. He was in the army. He and his wife lived on the base for a while, and then moved off base. They flew home at least couple of times each year. At those times, they visited each of their parents and took care of the needs that were a little more expensive.

The other brother lived about an hour and a half away from her and visited as much as he could. He also did what he could to visit and if she needed shopping done, he would do it for her. He visited her on a regular basis. He was a policeman in that town he lived. From Fairbury to Grand Island was the shortest distance of the three brothers to their mother’s.

We lived in Denver, about a six hour drive, but Bill made that drive when he could, and did physical work on the house and the yard. When I began to go with him I would make meals for her. I’d put them in containers, and then in the freezer so she could just take out one for her, and heat it in the microwave. I also did housework for her that she was unable to do for herself. Their mom had arthritis, and was pretty well crippled with the disease.

For a year I listened to him call her every week without fail. He spoke to her in that same mild and caring tone each and every week. How could you not fall in love with a man such as this? He treated me with the same caring tone and respectful manner. The sincerity in his voice and mannerisms spoke volumes as to what kind of man Bill was.

As the year went along, I heard conversations with his two boys in California also. This was the same manner as he spoke with his mom. Those conversations didn’t last quite as long, but the attitude, love, and respect was shown to them as well.

What can I say? After a year, he asked me to marry him. We got married and here it is 28 years later. He still takes care of me in the way only a husband can take care of a wife; loving, caring, and sometimes even crying together. I still care for him as only a wife can; listening, laughing together, sharing a sunset, or even a simple meal are still pleasurable to us. We tolerate his dementia, and we tolerate my physical and emotional problems. We try to keep them in their place and go on enjoying the love and respect we have always had for each other.

Not much difference

This will be a shorter post because I have been tending to Bill. I let this go a long time because of that, but I will be catching up soon I hope.

Let’s see, I left him at the memory ward, which was not necessary for Bill to be there, but I needed a break from the frenzied life we had been living. With all the doors slamming shut, and only small windows opening, I needed the break. Therefore, when I left him there, I went to NE, then Denver. I visited with old friends, but by the time I got home ten days later, I needed to rest up.

After a while Bill was spending more time at home than he was at the nursing home. We decided that he might as well come back home. Before he moved back in, I went to FL to see a dear friend. The days are getting shorter for all of us and I wanted to see her one more time.

I wanted to move to another town, so we moved into a place that I thought was like assisted living where I would get some help with Bill. We had two rooms, and the services were supposed to be room cleaning and laundry. We never got any room cleaning done, I had to do that and there was no help with Bill. What was the point of being there where they take all of your money and only give you three meals a day. There was very little nutrition in them and consisted of little taste either.

We decided that we would be better off going back to the town we came from and get our own apartment again. At least we will be eating decent meals and have someone coming in two or three days a week to clean, cook, and run errands for us. While we were there I became blind as to the continual decline in Bill’s judgement.

Someone told me that he had gone outside and wandered into the woods. Not thinking too much about that as he was in the room with me again. When night fell, I almost had a heart attack when Bill got undressed. His legs were covered with chigger bites on both legs from his feet to his thighs. I asked him how he got them clear up there and he said that he wasn’t sure, and I spent the next three hours scraping the bites open and dabbing each one with alcohol. He did remark that he learned a lesson that day.

When I look back at the few months that we spent there, I was aware of him getting a little worse and when one of the resident’s boss came in, Bill didn’t like him, he stood up at the table, and was telling me to get out of the way. I was sitting between the two of them. When I asked him why he couldn’t go around the table he held up his fist and said that he wanted to punch him in the face. This was the first sign of any violence I had seen in all of our years together. Never would I have guessed that he would threaten anyone. This guy was twice the size of Bill.

There were a few other things that he did that were not acceptable, but he wasn’t aware that he was doing anything wrong. We did have two rooms, but we had to go out into the hallway to get to the other room. Then he got lost and opened the wrong doors a few times which I was not aware of until later on. I was glad to go back to apartment living. I was having to be with him all the time and with him in whichever room he was in.

Back now to our own apartment.

Dance, Dance, Dance

Dance? Why, Thank You Sir

When I saw a flyer sitting on the counter at the nursing station one day while I was waiting for Bill to get ready, I just knew this would be something Bill and I would be interested in going to. There was going to be a shindig at the nursing home. Everyone and their families were invited. There would be a Country Western Band from 2-4pm. A petting zoo would be set up between 4-6pm which consisted of a skunk, kangaroo, porcupine, camel, capybara, and some other more common animals to our part of the world.

Of course, there would also be hot dogs, soda, cotton candy, and a few other choices of usual carnival food items. We went to this as it was set up in the driveway of the nursing home. I didn’t get there until 3pm since my home care worker came that day and wasn’t done until 2:30.

When I got there, the band was playing in the main dining room and Bill was just being escorted back to his wing so I told the aide that we would like to go over and listen to the band. We walked back over to the main building and could hear the music coming from the dining area. I told Bill that I’d like to go and listen to them and we began to go down the hallway. The closer we got to the dining room, the louder the music. I suggested that we go listen to it in the visiting room in the front. Bill agreed and we started to walk back the way we came.

We hadn’t gotten very far; Bill stopped, took my cane, set it aside and said, “Let’s dance!” Just imagine my surprise at that since in our 29 years of marriage we had never danced. Not even at weddings would he dance! Now that I can’t keep my balance very well, hence the cane, he wanted to dance. “Okay, I replied let’s dance!”

There we were, just dancing our hearts out and both of us smiling from ear to ear oblivious as to what was going on around us. Occasionally I did notice the ones that could see down the hallway from the dining room were just watching us instead of the band and smiling too. Some of the family members made remarks such as, “Oh look, they’re dancing, isn’t that just adorable?” and, “Isn’t that precious?” Several stopped and watched for a few moments smiling then walked on. I thought to myself, “Yep, we’re old,” and once again turned my attention to dance with my husband. Bill grinned from ear to ear, and was oblivious as to anything going on around us. I just wanted to be in the moment with my husband while he was happy as he was before this monster overtook him.

I know it used to make me smile too when I’d see older people dancing or walking hand in hand down the sidewalk. It is smiling and worthy of an “Oh, isn’t that just precious?” The literal translation of those types of statements is, “Isn’t that nice an older couple is still close and intimate? They want to and can do things that they did when they were younger. We fit the bill, 29 years of marriage, and even through the dementia we giggle over a private moment while taking a walk. In marriage there is an intimacy that only those two people have. A look, a twinkle in the eyes, and a reach for the hand. Those days are much fewer now as the dementia has slipped into Alzheimer’s.

The next time you see an older couple dancing together as if they were one, ice skating as only a couple that has been married for years can do, walking hand in hand and talking, perhaps even giggling at a memory only they share, think to yourself, “Isn’t that precious, and isn’t that adorable?” Happy marriages filled with laughter, trust, love of a lifetime, intimacy, and gracefulness in old age.

Not every time I see him, will he smile and that new sparkle will be there. I am not fooled by this kind of behavior for I know the time will come when his eyes will be blank once again, his smile will fade away, and he finally will no longer remember me. This happens, day by unannounced day. For now, I will take these fine days while his eyes have a mischievous spark once in a while and his smile is sincere. I will take today and cherish it even after it all stops.

He is not smiling as much and is confused as to where he is moving. He is wandering and that is not good. He is now in a dangerous position. I know that when we go to the doctor he is going to put him into a nursing home.

A letter to my stepson

 

 

My dear Stepson,

From the first day you came to live with us when you were eight years old, and the cutest little boy I had ever seen. You looked like your father, walked like him, talked like him. You followed after him all the time. Your brother had come to live with us at the same time. I’ll have to admit, we had some issues settling in and thinking of us as a family. I’m not sure that either you or your brother ever did.

I know you remember the house we lived in when your dad and I were married. Remembering one instance still brings tears to my eyes, and that is when your brother got up on the roof to help your father repair some shingles. I was standing there when you asked if you could help too. Your father said “No you can’t, just your brother can.” I saw the tears welling up in your eyes as you looked at me with disappointment on your face. Do you remember what I said? I do.

I said, “That’s okay, I need you to help me shop, you are so good at finding coupons for me. I just can’t shop without you. You’re my little shopping  buddy.” So off we went. You were, content while we were shopping. You helped me a lot. You and I cooked together, you helped me with dishes, and sometimes you helped with cleaning. You helped me almost all the time.

That was just one instance and it may not even mean much to you. You do not have to be someone’s mother to see your stepson is hurting and try to sooth that big scrape. You do not have to be someone’s mother to feel your step child’s pain, see hurt in their eyes, and be there when he needs you.

I was the one who was there when you were in trouble, and it was me that talked to your teacher when he cursed. You don’t have to be a mother to watch your plays, and go on field trips with your class. Do you remember who cooked for the family, changed the sheets, cleaned the house, tucked you in and kissed you good night? Son, did you hate me back then?

I’ve stuck with your dad through each stage of dementia. With each skill he lost I’ve been here to cry for him. When a thought was lost because he couldn’t get the words out. I cried for him.  Every time he would get mad at himself who was there to calm him? I’ve been here all along. You haven’t seen him slip at all. You just come here and think he is fine because he is having a good day. You have not been here for anything he has been through.

Do you realize that if I had not called, you would not even know you father has dementia? I say that because you never call him. I’ve called you. Why? Because I think you should know about your dad even if you don’t think of him often. Yes, you visited us three or four times, but you wouldn’t spend time alone with your father. It was you who was telling me to get him involved to keep his mind active. I didn’t see you trying to do a thing for him.

When I told you he was coming in and out of Alzheimer’s now. You immediately wanted to move us to Phoenix. You must have thought that he was able to be moved without falling further into Alzheimer’s. Your father is 72 he needs to be in a nursing home, but I am still caring for him. I take care of his every need. I dress him, I bathe him, I comb his hair, I shave him, I brush his teeth; and I help him eat when he can’t. He doesn’t like it when he can’t see me, in fact, he panics. This goes on 24 hours a day, 7 days a week, 12 months a year.

Then just the other day I had to call you again because you don’t call your father. You would not even know that your dad was slipping in and out of Alzheimer’s. When I explained that your father and I talked about moving to Phoenix and neither one of us thought this was a good idea. He was worried about starting over again too.

When I told you about us not wanting to move down there, I knew you thought that I talked him out of it. You don’t really know your dad at all. I could hear it in your voice. I’ve heard that tone before. However, that Sunday your father could hardly talk. His head was on the arm of the chair, and random words ran together with no formed thought. Suddenly he snapped out of it when he was saying bye to his granddaughter. He joked with her, changed in an instant. I rejoice when he snaps out of it. That means I’ll have him with me one more day.

Saying good-bye to your father only and not just once, but several times. You made your feelings very clear when you did that. You’re not very subtle, you are very plain to read. You believe that I have not taken care of your dad very well. Let’s look at that. From the time he was in the nursing home to the day I texted you that he was slipping in and out of Alzheimer’s, how often did you even call to see how he was? I can recall the exact number of times. It is 0. Now when he is slipping away from me so fast that I will soon lose him, you think you can just move us down there and take care of him yourself. No, neither one of us wants to start over. Your dad and I have been married 29 years come the 23rd of July, and I want to have  your father with me as long as I can.

I am your step mother and once you love a child you don’t just stop because he is a step child. I have no idea when you started to hate me, perhaps it was the day you screamed at me about the nursing home. Oh, it doesn’t matter. My feelings are; I was thrust into that position and I became a mother to you. Never will I ever claim to be your mother and I never did. I did mother you for 8 years. Think about these things, because lately you have burdened me with your hatred on top of the burden of caring for your father. It is what it is. I just have no more to say. I’m worn out.

Your loving stepmother

End of phase

End of retirement phase

 

Along with dementia comes a loss of many things in our lives. When one party is sick, and the other has dementia, the medial bills stack up fast on the credit cards. With medical and bills piled up, something has to give.

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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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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Twinkle

Twinkle

Even though it has only been a couple of weeks, it seems as if it has been a year since I have added anything new to my blog, in fact, I have added nothing at all to the words that meander down the road to insignificance. At the thought of those words, you can tell that I’m feeling a little melancholy today as I have the past days. Otherwise, had I not been in this state of mind, I might put on a smile as I forge onward to begin again on my blog.

I used to see a twinkle in his eye

And I knew that his smile was nigh.

My expectations left me high

Just waiting for that twinkle in his eye.

 

Yesterday I knew this was to be true

And now I’m not sure what to do

That smile has lingered like the dew

Oh for the eyes to twinkle a new.

 

Now his eyes just always look blank

My eyes saw nothing and my heart sank.

I looked around and I began to feel dank

But I wanted to be back into the rank

 

Of that beautiful and precious smile in his eyes

It’s called a twinkle and follows his guise

I’ve been waiting oh please give me that surprise

First a twinkle and then that smile I idolize.

 

My heart is broken but still I wait

Because I know it is there, I am his mate

For a while now it is usually late

But it’s there, just look, it’s beautiful, and I don’t have to wait.

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.

Which one is Truly Deprived?

Deprive

As many of you know, I have been struggling with my husband’s dementia. We’ve had windows open and doors shut, we’ve tried being playful, and yet I feel as if I am empty and can’t give any more.

Now I have to put him into a nursing home and the sadness is overwhelming for me. I’ve talked to him, and he’s been quiet and tearful. I have been also. Neither of us are able to say what needs to be said. I need a break and he is no longer able to stay by himself.

When I put my mom into a nursing home it was very different. She obviously needed more nursing care than the assisted living community was able to give her, Of course there is some guilt with that, but not nearly the struggle there is with a husband who has been a constant companion for many years. Now, you know that he will still be alive, but won’t be living with you any longer.

Anyone who is, or sees the early signs of any type of dementia can know what to expect. Some people go through them very slowly, and some go quickly. I just am wondering who will feel more deprived. Bill will know that I am not there and he can’t come home to sleep, and I can’t be there all the time. There isn’t really anywhere we can visit privately unless I take him out of the memory unit. He will miss me terribly. He’ll want to hold me, but I won’t be there, he’ll want to tell me he loves me. He’ll want to tell me he wants to come home. He will have to share a room with a stranger. His balance is terrible and he will be falling down. He won’t like sharing a room with any stranger.

I will be home feeling alone and not knowing what to do. I can go visit Bill, but most of the time I will go home alone. Will I be afraid at night? I won’t have anyone there to share something beautiful with. I will miss his arms around me and his shoulder to cry on.

Who will be deprived the most? We will equally be deprived. We are still looking for those golden years and they are “just around the corner.”