Side By Side

Mom's in the hospital with pneumonia. In the end what's important has nothing to do with me not getting sick so I sat in emerg for a few days with her, dead center in infectious control, beside the curtained off bed of a man who may or may not have had Lock Jaw.

Mom takes her oxygen out 20 to 30 times an hour when she's awake. Best way to stop her is to gently take the hand she intends to use. Sometimes she gives me a kind of "Aw you got me" look in her eye and squeezes my fingers with a little smile."

I got my wish to hold her hand.

Losing Ground

I've missed a whole year. Not a lot has changed and yet if I look back there are clues that Mom is losing ground physically, intellectually and age wise. The picture above won a little calendar contest at a nursing home. I'm proud of it but prouder of the kids for so clearly loving their Grandmother just as she is and for Mom for fighting so hard to keep remembering us most of the time and being loving about it when she can't. I understand intellectually that it is really just a game of luck that allows one person with Alzheimers to keep their social graces while others lose that capacity, but it still feels like it is something she is working very very hard to keep so she can be with us for the moments that we are with her.

Mom has a bad cold and I feel bad because I have not visited her - I know that it would not be smart for me to get sick as I tend to get very sick when I do. But I still want to go be with her and hold her hand because she is becoming very young and when you're little you want someone to hold your hand when you are sick. I try to call but even though I know she is confined to her room due to illness she does not pick up her phone. That is something new, losing the instinct to talk and pick up the phone is significant I think.

Last night I dreamed that Dad came and took her home. It was lovely to be with him for a while even if it was just a dream. Even though we have essentially lost the person she was for more than a decade and having been mourning this loss heavily all the while, and even though I want Dad to come and take Mom home, it's still not going to be easy when it happens.

Splitting Hairs

One thing I seem to be unable to get used to is that my Mother can no longer style her own hair. It is always neatly combed and put in a nice bun, but it makes her look like a different person when it is pulled back so tightly.

This was one of the last times she did her own hair. It was at her 80th birthday celebration. I know it probably doesn't seem like a big difference, but it's the way she did her hair for more than 40 years. Hey maybe that's why she thinks she is her sister in recent photos! Told you it was all about figuring out the little mysteries.

In the Frame

As I mentioned the other day, we're trying out a digital photo frame for Mom. The jury is still out on it's success as I found it neatly put away in her dresser. It's hard to know if was put away because it was casting shadows at night, or if it was turned off and blank, and therefore a pictureless frame taking up space. I saw some other scary things in her top dresser drawer, like Cheesies of an unknown vintage probably placed there "For Dad because he's not home yet and missed supper."

I certainly do not blame housekeeping for the things I saw in Mom's dresser. Mom can be very short with the staff sometimes if she feels they are invading her space so it's up to family to sort things like this out because we can get away with it. And really a small wardrobe, a dresser and a bed are the only personal space she has. If it were not for potential vermin, I'd say let her keep all the Cheeto's she wants.

Getting Mom dressed everyday is probably an uphill battle. She's gained weight over the past few years and so no longer fits into any of the clothes that she recognizes as her own. We try to buy clothes for her that she would like, but as she previously made almost all of her clothes, we just can't find things that she wants to wear. They are not familiar and therefore do not belong to her. She may not know what happened five minutes ago but she knows that she hates that colour and would never have bought material like that.

Anyway, as my niece and nephew and I visited with Mom last night, we showed her a slide show of family pictures in the digital picture frame. I made a conscious effort not to quiz Mom about who was who - it wasn't a test. But she herself often spoke out the name of the person in the picture and quizzed my niece. So the mystery continues. Mom enjoys the picture frame while we are with her. She does not seem to question the technology. If we can figure out a way to turn the frame off at night so it doesn't cast shadows maybe it will be a success.

Oh, and remember several posts ago I mentioned that I was going to ask Mom who the woman in the death bed scene postcard was? Last night I had the picture with me and totally forgot to ask her. But I'm sure that doesn't mean anything.

Easter

Well, once again, Mom proved herself able to overcome her illness and we were able to have her with us at our Easter family gathering. She seems to be fine physically. I think I was hoping for the same miracle we had at Christmas last year where for two days in a row Mom was bright eyed and happy, enjoying herself immensely at our family gatherings. Easter wasn't quite that because after an hour or two she just really wanted to go home. We understand that it's part of her disease, and in fact has a name - sun downers. Where the person feels anxious and it usually occurs in late afternoon. But it's still tough, because you want her to feel happy and part of the family, when what she really wanted was to find her shoes and go home.

She did have a wonderful conversation with my niece who is teaching in Poland right now and was able to joke and converse brilliantly - better than I could with all the noise and hub bub in the background. In the end she got my niece's name wrong as she passed the phone on, but while that is tough, having your name forgotten, once again at least she's still calling us by family names. She may be confusing who we are, but not that we are someone she loves. That she still has most of the time.

I'm excited to try a new tool in helping Mom. We now have a digital photo frame for her that shows a slide show of family pictures. Tomorrow I'm going to see how that's going and show her some new slide shows I've made. So far she's accepted the technological things we've tried, like her personal DVD player, although when it's not playing she doesn't know what it is and wishes it wasn't there. As soon as you turn it on for her she very much enjoys the home movies and doesn't seem to bothered that now a days you can hold a t.v. on your lap. So here's hoping the changing photo frame will be accepted and enjoyed.

Balancing Act

Okay I wanted to try to write something more cheerful than I have been but all I can think about is that Mom is sick with a bad cough and I'm not sure she is being looked after in that respect. Yesterday when we visited we mentioned it to a nurse and she said she would look after it, but today's nurse had heard nothing about it. She too said she would look after it.

At what point do we as family members stop trusting the "looking after it" part and move past that to becoming irritants to the staff and induce them to act? And maybe it is just a simple cold.

Mom tries very hard to suppress any physical complaint and last night she tried very hard not to cough by breathing as shallowly as possible. She would rather suffer than complain, and actually denies having a cough because she cannot remember having coughed one minute ago. Last year as she lay in the hospital with a broken hip she had no idea that she had injured herself until she moved and I think the only reason she received adequate pain relief was because we never left her side. And yet she can always find a positive often humorous spin to anything. She clearly didn't remember falling but told my brother that she must have been doing back flips.

And that's something that the staff where Mom lives love about her. Seldom complaining and making people laugh are a great way to endear yourself. So while of course we have to make sure her cough is looked after, it is a very real problem to worry about how staff at long term facilities treat your parent. We visit for a few hours at a time. Mom is there 24\7. The squeaky wheel family may get lots of attention but what's more important is the kind of attention the patient receives from staff when no one is watching and frustration levels at the complaining family are high.

We're lucky Mom is in a really decent place, and most importantly she feels at home there. In the hospital she was always trying to go home. Two days post hip surgery Mom somehow got out of her bed, folded her sheets neatly and said to her nurse, "Thank you very much for everything, but I need to go home now." So we know how fortunate we are that her long term care facility is "home."

And the times when Mom is physically ill are times when thoughts come in like: Well, maybe it would just be easier if she could go be with Dad. So of course that brings guilt and wars with the protective instinct when I have to face that my parent is in some ways more helpless than a child, because she would not remember any wrongs or neglect and is totally dependant on her caregivers.

And I don't think I knew the meaning of helpless as a baby till right now.

Speaking above a whisper

As I mentioned in my first post, I struggle with how open this blog should be. Not that it has a wide audience by any means, but there've been hints that I may be violating my Mothers privacy as well as my own. I acknowledge that and want to be as respectful as possible. The part that most people don't see is that my Mother's real day to day life no longer contains privacy. People talk over her head like she doesn't understand English; her washroom door needs to be left open for safety reasons - deeply upsetting to her because she can't remember that she needs help.

But people don't want to think about the day to day life of a person with Alzheimer's, and as long as that's okay, the disease is going to be on a back burner.

People ask "How's your mother?"

I've learned to keep it short and simple - a general word about her physical health. They don't want to hear, "Well today she made a list of all of her children, and my younger sister and I were not on it."

People need to keep a distance in case it happens to their family. Long before my Mother was affected by memory loss a hush would fall over her group of quilters if they spoke even obliquely about someone they knew who was getting "confused." Sometimes it was even hinted that it was just desserts meted out by God to that person. But that was extreme, usually there was just a hush, and a topic change.

So do I think my Mother would be Gung-ho for a blog about her? No, not really. (Although she would love that I showed off her puppets)

Would she ask me not to do it? No, both of my parents would not discourage me from doing something I felt I needed to do.

Am I damn tired of the hush, the hush that is the topic of Alzheimer's? You bet your sweet bippy I am.

Tonight I got to wondering if there's a ribbon colour for Alzheimer's. You know, like pink for breast cancer. Yes there is, and it's purple. Trouble is purple is also the colour for 27 other causes and I don't think that bodes well for a disease that people can't even say out loud.