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.

Home spun truth

Before I met Alzheimer's up close and personal I had never thought about the word confabulation. There was truth and untruth and that was final. Nowadays confabulation is one of my Mother's best survival tools. Her life is no longer logical. There is no reason for her to be in a long term care facility because she is not sick. She cannot remember that she cannot remember. There was no reason for people to send get well cards when she broke her hip because unless she tried to move she could not recall breaking her hip.

Her memory is broken but her mind is still amazingly agile. She can explain every small detail even when no explanation needed or asked for. A few weeks ago she showed me a small stuffed cat in her room and related how she had recently sewn it to keep her company while Dad drives taxi. She no longer of course, has a sewing machine.

As you can see from the pictures, in her former life Mom was more than capable of sewing a stuffed animal. In fact she could look at a picture of any animal and come up with a pattern to make it. At our house the sewing machine was only ever put away a few hours before midnight on Christmas eve, when all the Christmas gifts were sewn and church pageant gowns complete.

Mom tried in vain to teach me how to sew. "Who will do your sewing when I am gone?"

Now that it's too late, of course I am learning how to sew. I applique flowers on her blouses to make them seem more like something she would have made. A few weeks ago when someone complimented her on a flower that I had sewn on her shirt, she smiled and took full credit for sewing it on. That made me feel good, because confabulation is how my Mother makes sense of life. It would make no sense that I sewed it on. Ruthe doesn't sew!

I look around her and see other folks that are far more anxious than Mom. I don't care that she is not telling the "real" truth, I am just grateful that she still has the ability to fill in the blanks in a way that brings her peace.

Living in the moment

My mother has taught me that even if it will soon be forgotten each and every moment has value. I try to give Mom lots of photo books packed with pictures of her having fun. My heart breaks a little at the times when she doesn't recognize herself in those pictures.

"Is that me?"

"Yes Mom."

"Well, I thought maybe it was my sister."

But do you know the miracle?

Most of the time she remembers her grand kids and great grand kids. I think if she could choose who she wanted to recognize it would be them.

Little pieces

During my last cold when I coughed I sounded like my mother. I have other health issues that she does as well. I don’t know what the current theory about inheriting Alzheimer’s is because I’ve given up believing that anybody really knows. I used to have an amazing memory; too good actually. I’d remember every embarrassing thing I’d ever done or said and could quote entire conversations I had years ago. Now that I’m 47 - not so much. I’m starting to forget the little things. It’s comforting that friends my age are experiencing this too. But it still scares me. A lot.

To tell the truth

I had a lovely phone conversation with Mom last night. My calico cat was stretched out on me purring into the phone as I told my mother that I wished I could share Bella's warm furry self with her. Mom enjoyed hearing the tales of what my cats are up to and laughed heartily as I described Bella's penchant for escaping into my apartment's hallway and rolling around on the floor while I vigorously shake a jar of pennies in the misguided hope of scaring her home.

I also told her I am going through her old pictures and making slide shows for her and described the two older pictures above. Mom recognized them as being her pictures and was able to tell me the the boy on stilts was my Great Uncle Emmanuel. She wasn't sure about the other one (it's actually an unmailed postcard) and asked me to bring it in sometime so she could see it.

While we were talking a nurse came in and asked Mom who she was speaking to. A reasonable question because Mom has been the victim of telephone sales people, receiving harassing calls for not paying for a credit card she did not recall signing up for. Mom told the nurse she was speaking with Karen. (My sister) That was understandable to me, our voices are almost identical on the phone, and while Mom does get family members mixed up in person too, we are enormously grateful that she always knows us as trusted family members, a luxury we know we could lose at any time.

Anyway, the nurse told Mom to tell Karen hello, so I went along with it and told her to say hello back. A few minutes later the nurse took the phone and started a conversation at which point I admitted that I was not Karen but her sister Ruth. And then I wanted to reach through the phone and hug my mother while the nurse said disparagingly, "It's not Karen at all Melinda!"

Most of Mom's care givers are wonderful, caring, loving people, but this woman is old school, errors must be corrected. I disagree with this with all my heart. Accuracy no longer counts. One of the things I am most grateful for is that my mother does not remember that my father died two years ago, and is most times content to wait for him to come home. She does not always know where he will sleep when he does show up, but she says they will make room on their small bed.

Even my 4 year old niece and 7 year old nephew understand that correcting Grandma isn't necessary. I wish more grownups could learn this small lesson in kindness.

Happiness Still Happens

I think that I take so many pictures of it when it does because it is so fleeting and soon forgotten and I hope that maybe I can help it stay.

A Rose by Any Other Name Would Still Stink

I hate the name of this disease.

No offense to Dr. Alois Alzheimer, but it's just not a catchy name. And it's way too easy for people to change it to "old timers" and dismiss it as something normal that happens to the elderly. It's not normal. That kind of thinking only works till it hits someone you love. Or yourself.

Dementia seems even worse to me. How is this a respectful name? You would be insulted if someone told you your actions where demented. Everyone but the most ignorant have stopped saying retarded because of the stigma attached to that word. Where's a kinder word for a disease where the person can't remember that they are ill, and so every time they hear the diagnosis once again feel the shame and surprise of being told they are demented - a word used interchangeably with crazy in our society?

And I love Harry Potter, but a whole new generation of people are going to grow up associating the word Dementia with Dementors: "Soulless creatures considered to be among the foulest beasts on Earth. They are soul-sucking fiends who guard the wizard prison, Azkaban."

Names are important and it should be possible to change them. Just ask anyone named Britney and I bet they'll tell you.

Amazing

My Mother is the smartest person I know. She was always well spoken and talented, but I didn't realize till she was diagnosed with Alzheimer's eight years ago how intelligent she really is.

It was tricky to convince her doctor that there was a problem and she would have passed the doctor's test for Alzheimer's except she missed a rather major question - what season it was.

The area of my mother's brain that controls social graces has not been changed too much so it is often difficult for people to believe she has Alzheimer's when they first meet her. It's not till she repeats something she's said three or even one minute ago that it becomes obvious.

Mom takes visual cues from her surroundings very well. Her newspaper is often nearby so she can glance over to see the date. She still does word puzzles and one thing we can do happily together is the daily crossword puzzle.

I admire how she attends every activity at her long term care facility and participates fully. I think in her circumstances I would sulk in my room. Once when I attended a word game activity with her I came away totally impressed. Mom could have answered every question almost instantly but many times allowed others to answer first so they could join in the game.

I've seen her greet a visitor warmly even though I could see that she was not sure who the person was: "Oh hello, I thought I might have visitors today, but I didn't know it would be you!"

Despite what I wrote yesterday, I would give anything for my mother not to have this disease. I like to think that we would have figured things out. But the fact is she does have Alzheimer's and every single time I am with her I come away truly amazed at her grace, intelligence, and ability to find enjoyment in the smallest detail.

What will be will be

Hello

My name is Ruthe and I am just feeling my way in starting this blog. I'm not sure what it will turn out like.

Mostly I think it will be my place to deal with the fact that my mother has Alzheimer's, hence the name of the blog.

The biggest question I have about this blog is who I should open it up to. Although I have come up with some good ideas to help my mother, particularly with the use of pictures, I don't think that this will always be a consistently up beat "let's all help each other with good ideas" kind of blog. Maybe that's the most helpful thing I can do. Just create a place where it's safe to be real about Alzheimer's. A place where you can be upbeat and helpful, but you don't have to be.

A place to be honest.

Alzheimer's is a soul sucking disease. It robs everyone, including the sufferer, of a person's life years before they die. But there's beauty and triumph too. And it's all about solving mysteries, searching for clues to how you can help break through the memory barriers because although there are specific categories of memory loss, every person's brain is different and each of our loved ones respond differently.

Maybe your secret is that you can hardly force yourself to visit your family member that has Alzheimer's, the change is just too depressing. Or maybe you think sometimes that it would just be so much better for everyone if they died. Maybe every time you lose your car keys you worry that "it" is starting for you and you resent that Alzheimer's is in your family tree.

Let me start the honesty by revealing my biggest secret about my mother's illness. I've never heard or read of anyone else saying this. I like my mother more now. I find it easier to be around her than before. Much of the difficult push and pull and strain of our mother daughter relationship has eased. I no longer fear disappointing her and that has freed me to be more open with her and to find real joy in helping her make the best her difficult life situation. She doesn't nag me about coming around oftener because she can't remember how long it's been since I visited. And so of course, I visit her more. She needs me and that's easier than needing her.

No lightning from the sky! So I'll just add the disclaimer that everything I express in this blog is personal opinion and will certainly not apply to everyone, and we'll see where it takes us!

Edited to add:

It is the truth that my Mother and I get along better now. It is also the truth is that I would give anything to have my Mother not have this disease. I wouldn't care if we argued every day for the rest of our lives. I miss HER terribly.