Tuesday, April 19, 2016

The Word Is Out But It's Just Not Enough

With nearly every post to this blog I receive a comment from someone that is dealing with, or has dealt with Alzheimer's and it's brutal destruction of a family member. I don't know why I'm surprised that so many people can relate. According to the World Alzheimer's Report 2015, there are an estimated 46.8 million people world-wide with dementia and they project this number will double over the next twenty years. 

Last week the Today Show aired a segment with Actress Kimberly Williams-Paisley talking about her new book " Where the Light Gets In: Losing My Mother Only to Find Her Again," about the struggle with her mother's dementia. 

I applaud Kimberly Williams-Paisley for sharing this very personal story. According to the interview she used her book as a coping mechanism much the same way I use this blog. Her story is just like the story of many other families dealing with dementia, however, for many other families it's only half the story.

The families I am talking about are the millions of unpaid, in-home caregivers that sacrifice almost everything to care for a loved one.

It's not only the financial burden, but the time, the solitude, the loss of sleep and the stress of being a caregiver. With all that a caregiver gets to watch the daily decline.

Decline, what an underrated description of dementia. Dementia has ripped away all that Mom was. leaving behind only a hollow shell.

In Mom's case when her dementia first became evident, she called upon a family friend to help her pay the bills and complete the tasks she would forget. That had varied results and I had to step in to correct many things that were over looked. When we tried moving Mom into assisted living the facility implied Mom would be a burden to the other tenants and would need placed in the Alzheimer's lock-down area.

Being in a lock-down Alzheimer's ward was not the right choice for Mom, so we made the decision to move her in with us. In the beginning things were fine, Mom could do nearly everything to care for herself, other than cook and drive safely, including carry on a great conversation.

Those time were good, but today dementia has stripped everything from Mom both mentally and physically. She rarely speaks, if she does try, she can't get it out. There is no facial recognition of anyone, even me--at times she thinks I am her husband or brother, but never her son.

As of today, Mom still has a small degree of continence, she can still walk to and from her room, and she can still feed herself. Other than that, everything she was has been stripped away by dementia.

On top of all this, there are family and friends that have absolutely no understanding of dementia and it's a constant barrage of questioning why we don't take her for lunch dates and other activity's. It even reached the point once that one of her friends called our local Sheriff's office to do a welfare check on her.

Bottom line, what do I wish for today? I wish there was a real cure for this disease, but I also wish that mainstream media would dive deeper into the subject and show the world the real horrors of dementia.

Friday, April 15, 2016

Did You Get One Of These? It Came In The Mail Today

Today's post probably needs a bit of back story, so here goes. When we moved Mom three years ago she was still fairly functional, she just couldn't take care of herself safely living alone any longer. With that in mind, we just moved her and her stuff with no understanding what trouble it may bring down the road. Thinking back in retrospect, how could we know, we had never dealt with this level of dementia and didn't have a clue that Mom's mind would deteriorate to this extent. 

Mom's stuff. That's where the fun really begins. When I say we moved Mom's stuff, that's just what we did. No we didn't move her entire house full of belongings, but we moved the items we thought she needed plus the stuff she likes without sorting any thing out. i.e. full dressers, photo albums, books, important papers, etc. 

OK, now we can continue. 

Yesterday, Mom came out for breakfast carrying two cards in her hand like they were ancient Greek scrolls and made of gold. Once she was sitting at the table with coffee in hand she asked me if I had received these. She continued by explaining they had came in the morning mail. Well I knew they didn't come in the mail, we get afternoon mail, they were from the stash of treasure hidden in her room, but I told her I hadn't received any thing and asked what they were.

She handed me both cards, and like a card she brought out to show me Monday, they were both wedding invitations. I only looked at one of them but it was from 1969. I showed the her the date and explained that I was only 11 years old when that came in the mail. Of course she wanted to argue that it just arrived in the mail, but again I killed the conversation by bringing her food. Once breakfast was on the table all thoughts about weddings were lost.

After breakfast Mom stayed up and watched TV for a bit then shuffled back to bed leaving her prized announcements on the table. Once she was back in her room I grabbed the invitations and hid them away to show Paula later, still never looking inside the second card.

Once Paula made it home from work I handed her the announcements to look over. Within a few seconds she started laughing and handed me the one I hadn't bothered to look at. It was actually the reception announcement from my first wedding in 1977.

Well my announcement gave us a good laugh, but it was a real indicator into Mom's state of mind. Not only does she not know me, she didn't even recognize the announcement was about her son. It also confirms that Mom really has no concept of time or space. If she sees a dated item, that's the current date and that's that as far as she's concerned. 

Well that's enough for now. Have a great weekend!

Thursday, April 14, 2016

Things We Think Go Bump In The Night, But Really Don't

Mom is slipping. It's sad, but that's the harsh reality of Alzheimer's tearing away who you are and who you were. I'm with Mom every day, but I can still see the changes taking place on near daily basis. Now she's too the point that she may not eat unless I tell her it's time to eat.

Today, I was in the kitchen when Mom came out of the bathroom, comb in hand, she's always packing around a comb and sometimes more than one. Anyway, once she saw me a smile crossed her face--I think at times she believes she's here alone and is happy to see another human--and she asked, "is there a lady?" 

After a moment of silence she took her hand, her comb hand, and started swinging it around the kitchen. I had a pretty good idea she was asking if Paula were home, but she can't remember Paula's name either. It took several attempts for Mom to grasp, but eventually I got the point across that Paula was at work and would be home tonight. She thought, then stammered out a reply of "OK, I'll wait".

It's difficult but I held back the laughter and asked Mom what she needed. She stuttered a stammered a bit more, then exasperated she gave up by saying "I don't know".

At this point, I dodged any further discussion by pointing Mom toward her coffee on the table. Again this made her happy as a grin crept across her face and she was off to the dining room leaving me free to cook her breakfast.  

So speaking of hair, I'm sure Mom was looking for Paula earlier to complain about her Albert Einstein style of hair. She complains about it nearly every day and has almost every day for the last year. 

Mom's hair was getting pretty long and unruly so the last time Kel was down we had her give Mom a much shorter bob cut. The last time Kel cut Mom's hair she threw a fit about the style for weeks. Kel gave her the cut on a Saturday night. Things were going well and Mom appeared to be pleased, that is until Tuesday morning rolled around. 

On Tuesday morning Mom came out of the bathroom shuffling quickly along. Seeing this I knew she was on a mission. I had already started her cooking breakfast, but instead of her normal routine of walking over to the slider and making a weather comment, she made a beeline straight toward me. When she was close enough she turned around, grabbed the back of her hair with one hand and pointed at the back head with her comb hand--I told you she almost always has a comb in hand--then turned around and glared at me. Seeing her glaring at me I asked her, "what?"

Instead of using words, she wheeled around and repeated the entire process again. When she turned around I asked if there was something wrong with her hair. Immediately she gave me an angry scowl and told me that someone must have came into her room and cut her hair while she was sleeping. 

I tried to explain that it was cut three days earlier by her grand daughter Kelsey, but all that did was piss her off and off she stormed, well more like shuffled quickly, back to her room. 

Once her breakfast was on the table I went to her room to inform her breakfast was on the table. By this time she'd forgotten all about the hair and was happy breakfast was ready.

I try to find the humor in every situation like this, it's how I keep myself going, but man oh man do I feel for her. The only saving grace for Mom is she can't remember any of this, plus she can't even remember she can't remember.

Well that's all for now. Have a great day!