Diary of a Caregiver: Confession #3

If you haven't seen them you can read Diary of a Caregiver: Confession #1 Here.

You can see Dairy of a Caregiver: Confession #2 Here

The Psych Ward

Saturday November 21, 2020

The next morning (actually afternoon) I called the hospital to find out how my mom was doing. They told me she was put in the psychiatric ward. This did not surprise me, but also made me feel very sad for my mom. I asked to speak with her, but they said she was asleep. I let the nurse know I would be at the hospital within an hour so I could sit with my mom so she wouldn't be afraid, and I could guide the nurses in how to communicate with her. But then the nurse told me something I absolutely did not want to hear. She said the hospital was not allowing any visitations due to Covid. The pit in my stomach grew even worse and the anxiety I already had was heightened more. My hands and stomach began to shake. I told the nurse that they must let me in to be with my mom. I told her that she's blind and gets scared and confused easily. I said I would wear the required personal protective equipment (PPE). She coldly said again, "No visitations at all." I asked her if there was anybody higher up the chain of command with whom I could speak. She gave me the number for Mr. Rockwell, the man that was the head of the psychiatric floor. Immediately I called his number and got his voicemail, so I left him a message. A friend suggested that I contact my district representative. I investigated that, but I did not take that route because I really didn't think that would help. I tried calling the Office of Aging and the Council of Aging. Both agencies tried to help me out but that went nowhere. In the end I couldn’t get around the covid rules and I understood. But it still didn't make it any easier. I really wanted to be with my mom but that just was not going to happen. I was worrying 24/7 about my mom. I didn't want her to feel alone or scared. I didn't want her to be ignored. I figured my only hope would be to wait for Mr. Rockwell to call me back on Monday.

Saturday evening, around 6:30 pm, I called the hospital to find out how my mom was. The nurse told me she hadn't eaten any food all day. I asked to speak with my mom. This time my mom was awake. When I spoke with my mom, she sounded very old. She did not sound like herself. Her voice was rough and gravelly. She didn't say much. I asked her how she was. She said that she wanted to get far away from her mom. I asked her why. She said because her mom was mean and that she was hitting her. I had tears streaming from my eyes as my mom spoke. Her voice sounded so empty and lonely. I knew that if I could be there and hug her and kiss her and hold her hand, she would be fine. After she finished talking, I asked my mom to listen to me. She said okay. I told her not to be afraid. That nobody is there to hurt her. I let her know that she was in the hospital because she was sick but that she is getting better. I asked her to cooperate with the doctors and nurses and to not fight with them. Then I told her to eat her food when they come to bring her food. I let her know that eating is very important and that she should eat her meals. My mom assured me she would eat her meals when they brought them to her. Then before I hung up with her, she asked me, "Are you going to come pick me up? I want to go home. I'm afraid." With tears in my eyes and a crack in my voice I told her yes that I would be coming to pick her up. Sounding like a lost little girl she said that she would be waiting for me. I felt so helpless because there was nothing I could do.

Sunday November 22, 2020

I called the hospital at 9:30 am. I briefly spoke with the nurse. She told me that my mom refused to eat her breakfast and that she has been kicking and screaming all night long and they had to give her some medication to calm her down. She did happen to be awake, so I was able to speak with her. I let her know that this was her son Rick and in a weak sounding voice her only response was, "Rick." She sounded like she was ready to fall asleep. So, I just told her a few things. I let her know that I love her very much. Again, I reminded her that she is in the hospital but that she is getting better and that everything will be okay. I asked her to please cooperate with the doctors and nurses because they are there to help her. Then I asked her to please eat her food because she needs food in order to get better faster. Once more I let her know that I love her very much.

Before hanging up I spoke with the nurse again and I asked the nurse what they were feeding my mom. She said in the morning they were feeding her oatmeal with a cup of fruit and yogurt. Last night for dinner they fed her fish with some sort of sauce on it with mashed potatoes and a side of vegetables. I told them that my mom would not eat any of that food. I let her know that they need to be feeding her scrambled eggs with bacon, buttered toast, and ice cream as her dessert and that she likes to drink apple juice or orange juice. For lunch and dinner, I let them know that they need to give her things like a cheeseburger with French fries or meatloaf with no sauce. I let them know my mom doesn't like sauce at all. She loves baked potatoes, and she does like vegetables that are soft. The nurse said she would notate that, but she told me that the best thing for me to do would be to come into the hospital on Monday and speak with the nutritionist and that she would give me the menu for the week, and I can make the meal choices for my mom. She gave me the nutritionist's name and phone number.

Selecting the Meals

Monday November 23, 2020

After speaking with the nutritionist in the morning I drove over to the hospital, and she had the menu for the week waiting for me at the receptionist's desk. I sat there for about an hour and a half choosing the foods and meals that I knew my mom would like. While I was still there Mr. Rockwell called me up. In a nutshell he told me there was nothing he could do about getting me into the hospital because the rules were mandated through the entire county.

After I was finished with the menu it was close to noon, so I called the nurses station to find out how my mom was again she told me my mom had not been eating and that she seemed a little bit more calm but still very anxious. The nurse said she was in a wheelchair sitting in the TV room with some of the other patients. I spoke with my mom for a few minutes. She was very angry with the attendant and the room. She told the attendant to give her the phone and she was very forceful about it. When she spoke with me, she didn't say much but there was a lot of noise in the background, and I could hear another patient crying and screaming and making a whole lot of noise. My mom was delusional, and she kept thinking that she was waiting for her sister, my Aunt Toni, to come and pick her up. Once again, I assured my mom that I love her very much. I let her know that she was in the hospital and that she was getting better and that everything would be okay. I asked her to please cooperate with the doctors and nurses because they are there to help her. And I asked her to please eat her food because she needs the food so she can get better and come back home. That was my mantra each time I spoke with her.

Social Media Support Group

During this time, I joined a support group on Facebook for people dealing with Alzheimer and Dementia.

The following is a question I asked in the support group:

Caring for my mom these past few years I have dealt with a lot of tough situations. But right now, I am dealing with one of the toughest

My mom is 83 years old; she has been completely blind since 2010

and she is hard of hearing in both ears.

She does not get much mental stimulation. She can't watch TV, she doesn't read (I've tried to get her to the Braille Institute, but she refuses). I've tried different types of textile puzzles and games, I tried audiobooks - but she's not interested in any of these.

The only mental stimulation she gets is from conversing with friends and family and counting pennies.

About a year and a half ago I discovered that my brother was getting boxes with 50 rolls of pennies in them so he could sort through them and find old or rare pennies. After going through each box of pennies he would count and wrap them in coin wrappers then get a new box. I told him he should let mom help him count the pennies.

So now everyday my blind mom counts pennies for about 2 1/2 hours. She enjoys this.

Over the past year she has had very mild bouts of dementia - but nothing that was really of concern.

But in the past five days I am concerned. On Saturday morning 11/7 at 1:00 am she knocked on my bedroom door and woke me up. She told me she had a nightmare, that she was sitting at the bus station waiting for the bus, but the bus never showed up. She said she was all alone, and no one was coming for her. I comforted her and convinced her that she was fine and that she is here at home with her family - that she is not alone.

I went to work on Saturday and on my lunch, I called my mom - she was at home with my brother. The conversation started out normal but then she asked me, "When can I go home." I asked her, "What do you mean?" She said that she and my brother were sitting in a motel room and that she wanted to come home. After speaking with her for a few more minutes I asked to speak with my brother. I told him to tell her he was taking her home and to have her pack a bag of her belongings then take her for a ride in the car for 10 minutes and then bring her back home and tell her that, "we're home." I left work early so I was home when she got back home, and it did the trick. In her mind she was back home and the people she was seeing (in her mind) were gone.

Sunday came around and I stayed home from work, and she was fine all day. She was grounded - but slept in late - until about 11:00 am. Since she was fine on Sunday I went to work. Tuesday she was good. But here we are on Wednesday, and she woke up around 8:30 am thinking she was at the senior center (a place she hasn't visited in 10 years) getting ready to play Bingo. She kept talking about Bingo and asked when the game would start. So, I found a Bingo number generator online and gave her a postcard and I called numbers for three games - she of course won two. Then when it was time to go back home, I took her for a walk in the neighborhood and brought her back home.

She was pretty good all day Wednesday but around 4:00 pm she slipped into it again and she was seeing (in her mind - remember she's blind) she was seeing a big line of people and she said they wouldn't go away. She kept thinking she was someplace other than home.

I'm not sure what is triggering all this sort of hallucinatory activity. But I have a few ideas.

1. She may be sleep deprived.

2. When she speaks with my sister or her grandson (my nephew) she becomes obsessed with them and will talk about them for hours and I think she even loses sleep because of that.

3. She may feel alone.

4. The passing of her closest friend (December 2, 2019) may have affected her.

5. Extreme earwax buildup - which is going to be taken care of on Thursday 11/12.

I have one question. When she thinks she is someplace else other than home and is seeing people in her mind, how should I handle it? Should I tell her that she is at home and have her feel familiar belongings or should I go along with it?

Billaudrey: I always go along with whatever my mother sees. I have told her before...."I don't see it/them, etc... but I am sure you do". That seems to satisfy her.

Eileen: Part of sight loss is seeing people that aren't there. The mind plays tricks. Imagine being sat blindfolded with ear defenders on - we'd all soon suffer (my mum is similar.) There are lots of potential reasons for this behavior - confusion, stress/fear/anxiety, urinary tract infection, dehydration etc. Maybe best to check with her doctor and in the meantime up her fluid intake through watery food - melon, grapefruit, grapes, veg such as cucumber and limit caffeine.

Looking a few months before dementia hit my mom… I was dealing with prostate cancer and its aftereffects were still affecting me when my mom became sick. The following is an account of what I went through during the radiation treatments.

Aug. 13, 2020

Today Thursday August 13th, 2020, I have received my 7th radiation treatment for prostate cancer.

Some guys can deal with this easily and even go to work on the same days that they have the treatment. Unfortunately, that has not been the case for me.

<<< Before you read on, I will be describing things in graphic detail. Only read on if you don't mind hearing things that are a bit personal in nature. >>>

Before I started the actual radiation treatment the doctor had me go on what he called dry runs. These were done in order to gauge the fullness of my bladder, my bowel movements oh, and the amount of gas in my body.

After the first dry run it was determined that I had way too much gas in my body. Everything else was fine, it was just the gas. Therefore, I went and radically changed my diet. I cut out any food that would cause me to have gas. So, foods such as dairy, vegetables and fruits and sadly, even whole grains were cut out of my diet.

I went to the grocery store and bought gluten-free products, such as bread and crackers and such. I also bought a variety of different types of meat such as beef, turkey, lunch meat, etc. No more ice cream, I was so upset, I love ice cream!!!

Several days later, which was Tuesday August 4th, I went in for my second dry run. This one went much better although they said I still have some gas in there and that I needed to do a better job at emptying out those intestines oh, they said I need to make sure to have a bowel movement and empty things out before I come for treatments.

Day one of my radiation treatment went very well. My body was prepared properly for the treatment. No gas, I had my bowel movements beforehand, and my bladder was filled to the proper level. They were able to do the radiation treatment with no problem whatsoever. They even thanked me for making their job easy. That made me feel good.

After my first treatment, I thought to myself, this is a piece of cake. I felt no side effects whatsoever. No pain, no tiredness, I felt normal. I thought to myself, I can go to work. The only problem was the appointments are at the times that I would be working.

Treatment number two went just as well as number one. It was quick and easy, no problems. Except after the treatment I was very tired. I had to take a nap and it was not a short nap, I slept for two whole hours.

Treatment number three is where we had some problems. They told me I needed to have a bowel movement. Therefore, they lowered the table on which I lay for the radiation, and I exited to the restroom where I took a bowel movement. Before coming to have my treatments, I had some problems doing a bowel movement at home. But it wasn't a big deal, I did what I did and then I went back, and they did my treatment. This time after the treatment again I was very tired, and I had to take a two-hour nap again plus I had pains in my stomach.

Finally, the weekend is here, and I do not have to have treatments on Saturdays and Sundays. I was so happy about that. The treatments, although they are not painful, are not fun. It's kind of depressing having to lie on that table and have these Light Beam machines, for lack of a better way to describe it, whirring around me and clicking. When the radiation treatments are complete, I always feel somewhat down. It is not a highlight of my day. But it was the weekend and that was a highlight for me. On Saturday I ate anything and everything I wanted, I had ice cream, and I ate all my favorite foods. But on Sunday I got right back onto my diet.

Monday August 10th comes around and I am in for my fourth treatment. By now I have been experiencing problems with urinating. It stings when it comes out and sometimes it comes out splattering all over the place. But this is common, so it was not anything with which to be alarmed. The radiation makes the prostate swell up which in turn presses against the urethra, which obstructs the flow of the urine.

After treatment number 4, I experienced some of the same After effects, such as headache, upset stomach, and extreme tiredness. Again, I took a very long nap. I also started feeling a slight stinging feel in my lower extremities - the rectal area.

Treatment number five was a bit rough. After five days of being on this new very low fiber diet I have developed constipation. All this trying to keep my bladder filled to a point but then also emptying out the intestines and having bowel movements is a lot of work. Being constipated I was not able to have proper bowel movements so when I went in for treatment number 5 the doctor told me that before they could do the radiation, I would have to have a bowel movement. Therefore, I got off that radiation table and went to the restroom, fortunately I was able to easily have a bowel movement.

I didn't think I would experience constipation or have problems with bowel movement because, a few days earlier, I started using a product called Benefiber which aids in having bowel movements. But for some reason the Benefiber was not working on me. I was still constipated. This is the first time in my life I have ever been constipated. This was no fun.

Anyhow, I went back and treatment five was administered with no problem. Again, though I experienced the headache, the queasy stomach, stinging in the rectal area, extreme tiredness and a new effect - my legs were very stiff and fatigued. It was hard for me to walk.

Wednesday's treatment number six 8/12 proved to be another challenge. After getting me on the table they told me I needed to take a bowel movement, so they lowered the table and let me off and I went to use the toilet. This time it was more of a challenge because I was constipated. But, still, I was able to do the bowel movement. They did the radiation treatment but told me I still had some stool in there, but they were able to work with it.

After the treatment I spoke with the doctor about the constipation. I told him I changed my diet and cut out fibrous foods in order to keep the gas down. He asked me what I cut out... I answered my morning cereal, bananas, apples, broccoli, carrots and so forth. He told me that I could eat all of those except the broccoli. He said to peel the skin off the apple and cook the carrots. He asked about the milk I use in my cereal - I told him almond milk - he said that was fine.

This morning I got up and made my cereal and milk with banana, prunes and grapes. For lunch I had a turkey burger and cooked carrots - they were good - more grapes and some lunch meat. Upon the advice of the doctor, I took Beano before each meal so I would not be gaseous. I did not take Benefiber because I got enough fiber in my breakfast and lunch.

I felt pretty good as I drove to the radiation lab. I did not feel gassy, and I had good bowel movements. I was ready to have a good and quick radiation treatment.

So, here I am Thursday August 13, 2020, ready for treatment #7. They have me up on the radiation table ready to go. The sonogram is on my rectum and lights are lowered. The radiation arms start whirring - but no clicking. Then, the arms stop, and the doctor comes into the room and tells me I have gas. So, they stick a catheter up inside the rectum which helps to release the gas. After that they raise the table back up and leave the room to sit at their panel of computers on the other side of the wall. The process starts again, the computerized arms on the radiation machine start again, but after two minutes they stop and the doctors come back in the room, " Rick, you still have gas." By now, I am getting frustrated and a bit on edge. They lower the table and I get up and head toward the restroom where I belch several times then sit on the toilet and pass more gas.

Now, I feel a bit more confident and hope that I will make it this time as I do not want to have to add another day to my treatments.

They get me back on the table and start my treatment again. I'm breathing shallow as I hear the machine begin to whir. I'm hoping this time the treatment can be done. Once again, the whirring stops and the doctors come back in. "Rick, there's a lump of gas right in front of your prostate blocking the area where the radiation needs to go." They gave me a few options. They said we can try again, or I can come back later in the day, or I can just skip today all together and come back tomorrow. I told him I wanted to try one more time. I really did not want to come back later in the evening, and I did not want to skip a day which would mean I would add another day to the entire process.

This time I went back to my private dressing room, and I remembered that exercising helps to release gas from your body. So, I spent about 10 minutes there doing light cardio. After that I went back into the restroom, and I belched more and then I sat on the toilet again and within a few minutes a big burst of gas came out. I just knew that this was the one that needed to come out.

I was back on that table again ready to go for the third time and finally this time it worked, and I got my treatment.

I was happy that it was done but at the same point I always seem to get a little bit down after these treatments are administered. I do not like the fact that I have radiation going through my skin and bones and meeting right there at the prostate. I don't like it. But at the same point the alternative is much worse - surgery or the spread of the cancer.

Tomorrow morning, Friday August 14th, I will not be eating the prunes and I will not be eating my favorite wheat cereal. I will go back to eating the Cheerios and I'm going to leaving the milk out even though they said that the almond milk is okay. I'll eat the banana. Hopefully I can strike a good balance so that I will not have all this gas yet still get enough fiber in my body, so I am not constipated.

All of this is really very challenging. It's quite an experience that I hope I don't ever have to repeat again.

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Diary of a Caregiver: Confession #4 will be coming along in the next few days... Stay tuned!!!