Underwear is Every Where but Mostly Underneath

I once taught a song to my children titled; Underwear is Every Where but Mostly Underneath. You can only hope that underwear will stay underneath and dry. Anyone who is a caregiver most likely will eventually be faced with the Depends dilemma. You will know when it is time when you are tired of seeing dirty underwear soaking in the sink. The Elder being cared for does not remember to do anything beyond dropping them in the sink and so it falls to you to determine washing machine or garbage. When the answer is mostly garbage, it is time. Going to Depends probably is seen as a step toward giving up independence. A person with dementia has a very difficult time understanding why they need to change what they are doing and will become angry when they look in their underwear drawer to see new and different underwear. Eventually they may forget about the “lost” underwear, but not without many slammed doors and temper outbursts and accusations about you and the stolen underwear.

Underwear is not always underneath as I found out one early morning when I went into my Mom’s room. It wasn’t light yet and when she sat up in bed, I saw something white on her head. I wondered where she got a hat and why she put it on. When I turned on the light and saw what it really was, I exclaimed, “Holy Shit, you have underwear on your head.” (I am not always the most diplomatic.) She replied, “I do?” as she felt her head. She didn’t know why she had it on her head. Maybe her head was cold and she thought it was a hat.

What the Hell!

PS: Remember as you read my ramblings. This is not really about my mother. It is about my experiences with the woman left here in her place.

SKUNKED!!

Me: Good Morning Mom

Mom: Can you smell me?

Me: (Hesitating. How do I reply to such a question?) No, why?

Mom: I got sprayed by a skunk. Can’t you smell it?

Me: Maybe it was a skunk that doesn’t smell very bad.

Mom: Don’t touch me. You will get skunk stink on you.

Me: It’s ok, I can wash it off. I will help you get to your chair.

Mom: I will get the stink on the chair.

Me: I will wash the blanket that is covering it.

Mom: Ok. (Helped her get to her chair.)

Me: I will get you some breakfast.

Mom: Thanks, but shut the bedroom door so the skunk stink won’t get in the rest of the house.

Me: Ok, I will be right back. Fortunately, when I returned the skunk and the smell were all gone.

What the Hell! What kind of a sick hallucination has an old lady sprayed with a skunk?

Note: Hallucinations can be a result of dementia, kidney failure or certain drugs or a combination of drugs prescribed to help certain conditions. I have learned to discuss what Mom thinks is happening as though real because regardless of what logical explaination I have she either gets more confused or agitated. In her world what she thinks is happening is very real.

Who Took My Cookies?

I am not a cookie thief! Although... I have been the main suspect in the disappearance of Mom's cookies on several occasions. The cookies never really existed in the first place but were very real to her. Cookies are serious business to a woman who explored various recipes over several years until she created the best mouth watering cookies ever. Much to my Dad’s delight, she always had freshly baked cookies around. No need to steal them. They were always plentiful. So it is logical that cookies would be one of the reoccurring hallucinations that are real to her.

” Where are the cookies the neighbors brought?”, Mom demanded as I entered the room. I had been home all day and knew for sure that no one brought cookies so I logically replied that she must have been dreaming because there were no cookies. This angered her because she was sure there were cookies and that someone took them. My evil twin then stated emphatically that no one would sneak into the house to steal her cookies. She was still not convinced.

More recently, I have learned that if she believes there are cookies, in her mind there are cookies. Last week I tried to make cookies from scratch using a recipe from her recipe box thinking that it would be a great little treat for her. They were a dismal failure. I guess it is not the recipe but the cook who loves cooking that makes all the difference. I continue to keep cookie dough in the refrigerator and when she wonders where the cookies are within 10 minutes, she has fresh cookies on a plate next to her chair. Problem solved.

Hell, I've Lived Long Enough!

Mom usually says this when she needs help showering or getting dressed. The conversation goes like this:

Mom: How old am I?

Me: 87

Mom: How old was my mother when she died.

Me: 87

Mom: That's old enough.

Me: Old enough for what?

Mom: Hell, I've lived long enough. It's time to die.

Me: If it was time, we wouldn't be having this conversation.

Mom: Laughs

Basically the same conversation happens several times a week. She also once said that there should be a switch that could just be turned off when you are ready to die. My evil twin says, "Hell, Yes!"

The Dogs: Nicky and Musica

Mom loves her dogs! They have given her a reason to wake up in the morning when her body would appear to prefer to go to sleep and calmly pass over to the other side. They give her companionship and something to talk about when her world is getting smaller and smaller as a result of her disabilities. I sometimes wonder if her attachment to them is keeping her here...and the thinking of my evil twin is, "Hell, I shouldn't have encouraged her to get a dog after Dad died." (At times I will refer to my not so nice self as my evil twin. Of course, negative or irreverent thoughts and actions are that of my Evil Twin.)

Nicky: The Dog with the most toys wins. A few months after my dad passed away, Mom decided to get a dog. Not wanting to deal with a puppy, we searched for an adult dog and found little Nicky, a two year old Shih Tzu. We decided to go see him but planned to look around a bit before making a decision. As we entered the house, he ran to Mom and jumped up as if to say, "Please take me home." And so she did. Mom once again had someone to boss around and scold. He has turned out to be the best little dog. He is devoted to her, sleeps with her and spends much of the day sleeping at her feet. The rest of the day, he spends playing with the many toys my sister and I have bought him. He loves making whatever noise they make and taking them outside. He lines them up and lies by them, usually resting his little chin on one of them. He usually has 10-15 toys outside and a large supply in his toy corner. Mom scolds him and tells him not to take them outside. Of course, he ignores her and never brings them back in. That is my job.

Musica: The runaway rat terrier. Musica really belongs to my brother and his wife. She lived with them happily for at least 8 years. Then one day about 2 years ago, she decided to run away from home. She is a very small dog but can really jump. To escape from her yard into Mom's yard she has to scale a 4 foot gate. At first we tried everything to get her to stay home. I took her home, my brother would come to get her but she just kept coming back. After a few months of this, we gave up and let her stay. She sits by my Mom's side all day long and burrows under the covers to sleep with her at night. She guards her if strangers come in the house so we have to shut her in another room when the Hospice nurse or aide comes. She once bit a man who came to visit and reached out to shake Mom's hand. She comes to get me if Mom falls or has a problem. The downside of Musica is that she sheds white short hair, all over which I truly hate, but she is the best "Elder" dog ever and so she can stay as long as she wants. She has earned her spot in this house until she decides to leave. Both my good self and evil twin agree on this!

Attitude: Don't suck the life out of the people you come in contact with.

The other day I was in the waiting room at the dentist’s office. It was quiet and as pleasant as a dentist office can be. The receptionist was cheerful and friendly to everyone who came in creating a positive atmosphere. Well, as positive as a dentist office can be. While I was waiting, a man came in to pay his bill. When asked how he was doing, he replied, "Not so good." Every reply was negative. After his negative replies to all of her questions, it felt that all of the positivity was sucked out of the room and doom and gloom were left to fill the void.

One of the side effects of being a caregiver is discouragement, sadness, depression, anger, self doubt, etc. I fear that as I have shared information about what is happening in my world, at times it may have felt that I have sucked the very life out of anyone who listened. Although I try to infuse humor into difficult situations and hopefully that has served to put a more positive spin on my ramblings.

I am going to do my best to refrain from sucking the sunshine out of your day while continuing to share information on my experiences as a reluctant caregiver. Have a great day! You deserve it!

"We have a good family."

Often when Mom is able to fight through the mass of confusion that is now her brain, she will say, "We have a good family." She is absolutely right. Since I am writing the posts on this blog. It may sound like it is all about my sad experience with caregiving. We have the kind of family where this caregiving journey is about our collective contribution to doing the best we can for our Mother. As I mentioned in a previous post, one of my brothers lives next door. Ten years ago he chose to invite my parents to live next to him. He has been a wonderful support to them and handled all of the issues prior to my moving here by himself with occassional help from myself, my sister and my brother. My sister and other brother have always been very supportive and helped in any way they can. I am here because I had enough years in retirement systems that I could quit working and live on my retirement until I am free to do something else. All of my siblings are in crucial years in their careers. They need not feel bad that they are not physically here. Their support is shown in many ways. They both have flown here on numerous occasions to stay with Mom when my brother and I needed to be away. They have supported both financially and emotionally. We do have a good family because we had good parents. Thanks Mom and Dad. We love you where ever you are.

Puke! Pajamas! No Sleep! This must be Hell!

I believe we are in a living Hell. Why? You may ask. Well, my Mom because she doesn't know what the Hell she is doing and is trapped in a worn out body and worn out mind. And me because it isn't any fun to watch the deterioration of an intelligent woman and I have been here for four long years picking up the pieces. I know there will be an end, but I am not sure who will give up first. Also, I chose to do this so I am not complaining. Just stating facts.

This is how last night and the early morning hours went:

10:30 Pills and bed for Mom.

12:00 Bed for me.

12:30 Mom up going to the bathroom. Got her taken care of and back in bed.

3:30 Mom on the floor of her room trying to get up. Pajama top off. Coughing. Got her back in bed.

5:30 Mom sitting in the chair in her room. Pajamas off. Threw up. Puke on her, the chair, the floor. Said she wanted to put on her pajamas so she could get in bed. I helped her get in bed without pajamas. What the Hell?

6:30 Mom up sitting in the chair trying to put a blanket on. She thought they were her pajamas. I helped her get clean pajamas on and back in bed.

6:45 Mom coming out of the bathroom and determined to squeeze in the 6 inch space between her bed and the wall. Realizing that she would probably fall and I wouldn't be able to help her out of such a small space, I blocked her way and directed her to the side of the bed that she always uses. She was very angry, confrontational, and cried because I wouldn't let her do what she wanted. Sat on the edge of her bed crying and coughing. Puked on her clean pajamas

7:00 Mom standing in her room with her walker on the way to the bathroom but she was going to the living room. Wouldn't believe me when I tried to show her where it was.

7:45 Mom in the kitchen looking for the bathroom. Still didn't believe I knew where the bathroom is so she sat on the love seat in the living room.

8:20 Mom found the bathroom and I helped her change out of her puked on pajamas.

8:30 Mom sat in the chair in her room. I have her a paper towel. She used it to wipe herself. Said she was on the toilet.

9:00 Mom still in the chair in her room. Laughing at a TV show with the "with it" twinkle in her eye.

9:15 The Hospice nurse came. Mom told her that she hadn't been coughing, didn't throw up and had a good nights sleep. What the Hell!

This must be Hell.

The thing I and anyone who reads this can take away from the events listed above is this: Exercise, eat right, stay mentally challenged and pray that you can escape the clutches of diabetes and all of the related health issues that go along with it.

Poop!

There are many words for human waste, feces, excrement, poop, shit. Some are more socially acceptable than others so I will compromise on Poop. Poop is a natural thing. Everyone makes it, but not everyone is responsible for someone elses poop. I thought when my last child was potty trained, that I would finally only be responsible for my own poop. But then along came grandchildren who poop when their parents are gone. More poop to deal with! And then I became a caregiver.

I am sorry to say that caregivers must deal with poop. Unfortunately, one of the bodily functions that the elderly have problems with is the control of bowels. One of the most horrible sites in my world is poop smeared on the toiled with perhaps a bit or a lot on the floor in front of the toilet, some smeared on the handle of the toilet and... well I will leave it with that. Clean up is needed. And I am the clean up crew.

This issue is very uncomfortable for the caregiver. However, I believe it is most horrific for the person being cared for. They have lost the ability for privacy in the bathroom. Imagine how bad it would be to have someone have to wipe your butt. The good thing about dementia is that the incident is soon forgotten. I wish I could forget it as well.

If you are new to care giving, these are essential things to have on hand:

Depends (The whole getting your elderly parent to wear depends will be the topic of another post. I first need to get over the trama of dealing with this myself and then I will write about it.)
• A large box of disposable gloves.
• Clorox wipes.
• Flushable wipes. (Yes, you will need these.)
• A LOT of toilet paper.
• A toilet that has powerful flushing ability.
• Assistive devices for the toilet. Handles that attach.
• A sense of humor.
• Lysol spray.
• Air fresheners of all types.
• The ability to hold a straight face when facing a disgusting and smelly situation so that the person being cared for will not be further humiliated.

To end this post, I would like to give a tribute to all of the nurses, teachers, aides and others who chose to give service to the elderly and disabled as their full time career. You are awesome! I would also like to give a shout out to all of the caregivers, reluctant and otherwise who are helping out a family member or friend. Hang in there!

Mom, where ever you are, I love you!

An Extension Cord is NOT an Assistive Device!

I made my Mom happy today...and made her cry!

The happy parts of the day...
Mom managed to make it to the living room to sit in her favorite chair and was happy watching the dogs play and talked about how cute they are. I left the room to do something, heard a thud, and rushed back into the room to see what happened. She said that she tried to get out of the chair (with the help of her walker) but fell back into it. I said I would help her and asked what she needed to do. She laughed as she replied that she couldn't remember what she was going to do so she might as well just sit there. I told her that if I could trust her to stay in her chair, I would go get her lunch at McDonalds or Wendys. (Her favorite fast food resturants.) Anyway, she didn't remember that she just fell back into her chair so I explained what happened and that because she just fell back into her chair, I could probably trust her to stay in one place for the 20 minutes it would take to go get her lunch. She thought that was funny and we both laughed. This was one of the moments when my Mom's personality managed to sparkle through all of the confusion. It was like my Mom was back for a brief time. She was still in the chair when I got back and was quite happy with her lunch.

She was also happy when I fixed her a sunday this evening. Ice cream always puts a smile on her face. The small things that I am grateful for: A smile on my Mom's face and a "with it" look in her eyes.

The NOT happy part of her (and my) day: This afternoon I checked to see that she was asleep in her chair in the family room before I went to my room to do something. I heard a noise and went to investigate. Mom was sitting on a chair at the end of the kitchen table where she never sits. She had an extension cord in her hands that she was pulling on and kind of struggling with. I asked what she was doing with it and she said that she was using it to help her get up. It was still plugged in but she certainly could not use it for stabilization while she was trying to stand up so I unplugged it. She was very angry and told me that she couldn't get up because I unplugged the cord. She also said she was going to the family room, but her intent to get there was through the wall rather than going to the door near the other end of the table. I helped her get up and balance with her walker. By that time she was crying and didn't want me to help her do anything. But, What the Hell! An extension cord is NOT an assistive device and she couldn't get to the family room through the wall.

My Eyelash Extensions are Falling Off and I Am Grounded!

My daughter-in-law gave me eyelash extensions for Christmas. I looked fabulous! However, they do come off and need to be fixed every 2-4 weeks. I have a problem. I am grounded because Jen, the wonderful woman who cares for my Mom when my brother is at work and I need to have a break, get my nails done, go to the store, go to the gym or get my eyelash extensions fixed, is out of town. Everyone needs a Jen! I can't wait until she returns. Oh No! There went another eyelash. "What the Hell!"

What the Hell!?????!!!!

That is what I say to myself when I find something that even surprises me. (I have been a principal at a 7-12 school so nothing much shocks or surprises me.)

For example:

Yesterday my mom was eating spinich salad with her fingers...Not a pretty site.

About midnight last night, when the baby alarm alerted me to activity, I found that she had ripped her infusion set off and thrown it on the floor. There she was standing in front of the closet trying to figure out how to open the door so she could go to the bathroom. Yes, I did give her the prescribed sleep aide and it clearly doesn't work.

Several mornings ago, I found her infusion pump dangling through her depend and it had suspicious looking brown stuff on it. Enough said on that!

Last week at various times, she chewed on a blanket to "keep it from separating", stomped a spider that did not exist and fed the dogs left over syrup from her breakfast plate.

It is so sad for her because these behaviors are not who she is. As I have said before, I love my Mom! I am very thankful when I see a glimmer of the woman she once was sparkle through.

"What the Hell... Have a great day!"

I love my Mom but don't know where she has gone...

She really isn't missing.  In fact she is asleep in her room right now.  I just don't understand where her intellect and personality have gone.  She has diabetes and many conditions resultiing from the disease including dementia, high blood pressure, partial blindness, renal failure, etc.  The person I care for is no longer the Mother who cared for me, she is like a somewhat familiar stranger with annoying behaviors.  I think the most frightening thing about aging is the loss of cognative ability... or as my brother says, "The loss of your wits."

I am a stress eater!  It is not a pretty thing.  The more stressed I get the more I eat.  I need to STOP!   I haven't been running or cycling for over 6 weeks.  I have taken the path more traveled by people who are overweight, sick, depressed and tired and I need to get control! 

My brother lives next door and we have traveled this journey of caregiving together for the past four years.  Without working together on this, we would not have been able to help our mother remain in the home  that she loves.  This blog will be a look back at what we have done to manage the stress of caring for an elderly parent and a look forward at our committment to living a healthy life style.