Stages

As I have been gratefully reading your comments and shedding some tears I've been thinking about how there are so many stages to this disease. I was never on the front line of living at home with my Mom when she had Alzheimer's day after day after day. I know that took a real physical and emotional toll on my Dad and probably on those of you who are living that reality or have lived it.

My family was fortunate that Mom never drove so we didn't have to take away the car keys - such a hard blow on a person's independence, and such a huge worry if it can't be easily done.

My Dad was pretty good about accepting that there had to be changes to their living arrangements but even he had denial until Mom forgot where they were to meet one day and he had to call the Police to find her. She was happily having a coffee at MacDonald's a mile away from where he had left her but until he knew that, it was an awful helpless feeling.

Before they moved one of the hardest things I did was call the parents of the little girl Mom loved to baby sit and tell them that it was probably not safe to leave their child alone with her anymore. I felt terribly guilty to be going behind Mom's back especially since she loved that child like her own, but I couldn't have lived with myself if something happened. By that point leaving the burner on while quilting upstairs was happening a lot.

When they did move to an assisted living facility Dad took the brunt of Mom's anger and depression. She had no concept that she was ill and blamed everything on him and his failing physical health. Sometimes I wonder if my Dad would have lived a little longer if Mom wasn't ill but when it gets really stressful taking care of Mom 24\7 when she's in the hospital I think of him and how glad he would be that we are there for her.

I am SO fortunate to have 6 wonderful siblings and many grown up nieces and nephews that all take a very active part in helping Mom. I don't want to give the impression that I am doing it all by ANY stretch of the imagination and if you are the only or one of only a few people caring for a person with Alzheimer's my heart totally goes out to you. I don't know how you do it. I really don't.

Thank you

I want to thank everyone who came over from Kelly's Korner. I struggled to call my blog a ministry but I was hoping that the many of us who have come in to contact with this disease could have a few minutes of not feeling alone.

We all have different stories but the common ground is losing the "real" person we knew and of course still love.

In my first blog entry I had mentioned that it's been easier to get along with my Mom since she's changed. Most of the time we got along really well but we had our "moments." We never talked about the tension and I wish we had. Ten years into this disease I'd give anything to have one of those "moments" because it would mean that I would have my "real" Mom back.

Thank you again for clicking on my blog. Your comments have really ministered to me.

Meeting Whiskers

And then there are the moments like tonight that are so exquisitely beautiful and you realize you wouldn't appreciate them half as much if all the hard stuff wasn't happening too.

http://www.vimeo.com/9543038

Bingo

Today Mom was sharp! I came in and she was playing Bingo. Six cards at once! Now that was too many cards for her to keep up with but still, that she was up and about totally participating in an activity is such a big change from a week ago.

I have such mixed emotions. I am happy that she is doing so much better. Really happy about that. At the same time I want to cry because I don't know when the next phone call will come with the next down turn. The best way I can describe how I feel is "emotionally guarded."

Still we had a nice visit and she seemed to like the bunny I brought her for Valentines. She immediately told me a story about how the bunny came in this morning's mail from my sister. If you are a person who needs to get credit for giving a gift, Alzheimers is not the disease for you! A few minutes later she told me she'd made the cat and the bunny and thought they were a little too big but turned out okay.

There are still times when she questions why she would have so many stuffed animals and together we explain them away as being something for the grand kids to play with when they come, but mostly they are just a great comfort to her. If you drop in anytime that she is already or still in bed she is almost always cuddling with one of them. The stuffed animals are probably the best things I have done for her during this illness. That is something that makes me proud.

Something that doesn't make me so proud happened today. I had decided not to test Mom on knowing who am, but had an idea that she might because she seemed so lucid, but then the nurse that "lacks tact" came in with Mom's medication, handed her a glass of water and asked Mom to tell her who I was. Mom seemed thirsty, tried to take a drink of water and the nurse pulled the cup away from her lips and asked the question again. Mom was concentrating on the cup of water a few inches from her mouth and didn't answer right away. That happened three times till Mom finally answered, "Why, Ruth of course!" and got to drink some water.

I understand that asking the question was diagnostic, but denying her a sip of water until she answered was not. I am the product of two very pacifistic parents. I didn't get angry about the nurse pushing the glass away from Mom till much later. I know Mom would not have wanted me to react at all anyway, I just wish it would have occurred to me at the time to ask the nurse to allow her to have her water no matter what.

Mom won't remember any of this. The only imprint of my visit today will be a fuzzy rabbit that will hopefully be a comfort to her, and to me when I picture it in her arms.

Ups and Downs

So on Thursday Mom doesn't know me or her own name, and on Saturday she knows my sisters and seems to know who she is. This roller coaster is making me tired and I want off.

Maybe I recorded her non recognition of me so that I wouldn't feel so crazy right now. I can look at the video and see that she had no idea who I was, who the man in the picture on the wall was and what her name was.

But it's not me who's at the front line of this war, Mom is; and she is handling everything with the most remarkable grace anyone could ever hope to have in these circumstances.

Hindsight

Mom is..... I don't even know how to finish that sentence. The first picture makes her look so healthy and happy. And it was wonderful to see her laugh at something she was reading. But reading has become a compulsion. It amazes me that she still comprehends what she is reading at a slow painful but dogged pace. She hasn't regained much if any of the ground she lost during her last illness, even her speaking voice has changed.

I've said before that I don't test Mom's memory but lately it's been a diagnostic test to see if she remembers us or not. Now that I know she doesn't I won't test her anymore. If she does find her way back to remembering who I am I will receive it as the precious gift that it is.

I don't know why I needed to document the exact moment I knew for sure I was gone from her memory but nevertheless I did and here it is:

http://www.vimeo.com/9243505

I was kind of expecting Mom to not know who I was but it was quite a surprise that she did not remember her own name. I think it has been a titanic effort to remember us and I am honoured that she kept us with her as long as she kept her self. The picture at the top of this post is my attempt to help her with that. She will likely take it down off the wall like she has many other pictures but I had to try.

I wonder if it will now be kinder to call her Melinda rather than Mom. I think so because she should not need to be reminded that she has misplaced her loved ones.