Saddest day of my life

Interior Health finally called Friday and they had a bed for Mum. I had to get her in right away or lose the spot. After the fiasco with Hawthorne, where she attempted to get out of the car while we were driving there, I didn't think I could go through that experience again. I thought about having my sister take her in Sunday, but I knew she couldn't handle it. If she freaked when Mum reacted the way I knew she would, then we would lose our spot and go to the bottom of the list, and it would be another eight months.

There's just no way I could tell Mum the truth, so I had no choice but to lie to her. She has been experiencing a lot of pain lately with the sciatic nerve problem, so I thought I might pull off saying that I was taking her in to the doctors. I wanted the care facility to understand what I was doing, so I went there first to talk to the staff. I set it up that I would bring Mum in at 11:30; they would meet me and take Mum, and then I would leave under some lame excuse. I would come back later with her stuff.

She bought the doctor story, so I managed to get there at least. When we buzzed the intercom at the front door, someone came on and gave me the keypad combo to get into the safe area. I headed for the desk where I had met the lady earlier. No one around. Not a sole. I could see Mum was getting suspicious about where she was, so I went to sit her in a chair out of the way while I panicked looking for staff. An older gentlemen came up and asked, "how do I get out of here. I have to get out!" That really calmed Mum - not! Then Mum had to go the bathroom, so we started wandering around where I didn't want to go. A housekeeping person asked what I was looking for and when I told her a washroom, said, "oh, her room is ready. She can go in there." Shit! "Her room"? What room? I figured that would set her off, but she missed it. Thank God. I knew I only had a few minutes to find someone, so I asked one of the cleaning staff to find someone, and now!

The lady I spoke with earlier finally showed up and said she was sorry, she had been tied up upstairs. I told Mum I had to go back to the car for something, and left.

I was only home a few minutes when the phone rang. The caller ID showed that it was Windsor Manor, so I assumed they needed me for something urgent. To my horror, when I answered the phone, it was Mum, demanding to know where she was, what she was doing in this place, and to come and get her now! I asked to speak to the lady we met earlier, and Mum had no clue who this was. Luckily the lady was looking for her, so she took the phone. She was surprised that Mum had found a phone and remembered her number to call. I told her this was tough enough without Mum calling me. A few minutes later and yet another call from Mum, this one demanding I come and get her right now! I let it go to the answering machine.

I put her stuff together and went back on my third trip to the care centre. I called the girl who failed to meet me the first time, and told her I was not coming into the building because Mum might see me, so she agreed to meet me in the parking lot, which she did. She said they had found someone to sit with Mum and that she was doing better. When I asked about the phone, she said Mum had found one in the kitchen and the staff there didn't know she wasn't to use it.

Very stressful day - one of the worst. Knowing that Mum needs this care now, and that I have to get a job to survive and the house will be sold soon, and Mum had to go somewhere, doesn't relieve the major guilt I'm feeling. Knowing that Mum will not be coming back here, after calling it home for thirty years, is truly sad. And I know "beggars can't be choosers", but the place they have her in is for people much worse than Mum. I was hoping she would actually find friends and do some activities, and learn to enjoy it, but they have her in with people who don't know their own names. They wander around aimlessly, and have no contact with each other. It is very sad to experience. I know Mum will get like that sooner than any of us want, but I wish they had found a more suitable place.

At least she is in the system now, and hopefully I can start a new harassment program to get her into somewhere more social, and more in line with her Alzheimer's stage, which is now Stage Seven. If the house closes, then I can at least consider some private care options, but these are outrageously expensive. $150 a day seems to be the norm. With Mum cared for full-time now, hopefully I can research some other places and get her moved when the house closes.

The staff at the care facility had told me not to have any contact with Mum or she would just insist on coming home. They didn't want me talking to her on the phone or visiting her. Over the next few days she left thirteen messages, crying and saying she was sorry and could I please come and get her to go home. It just broke my heart listening to those messages, but I knew she was where she had to be now to be cared for by professionals.

Not a happy day by any stretch.

Just another day

My buddy Wade flew in yesterday and is staying with us for a few days. He was just here at Christmas and stayed with us then too. He asked about Mum, as he always does, and was happy that she at least remembered him when he was here at Christmas. I told him things were worse, and not to count on it this time.

He got back late and crashed on the couch in the living room. Mum was up early, and she came into my room and asked me if that was Kevin (my brother) sleeping on the couch - my brother who has been in Indonesia for months, and who she just talked to on the phone the day before. I told her it was Wade, and she said she didn't know a "Wade", so there you go.

It is an amazing disease though. You just never know what will stick and what won't. I heard her talking to Wade, saying it was her birthday March 24th, and that she would be 84. She hasn't once remembered how old she is for months, then, out of the blue, she suddenly remembers. Small glimmers of hope in an otherwise dark picture.

And how was your day?

No matter what, you have to see the humor in every day.

Although there is absolutely no humor in this part, and this one gets me angry, last night, Tuesday is movie night, and we go to Wendy's before the show. I heard her in the kitchen around five, opening the fridge and so on, then I hear those wonderful words, "come on Gary, get out here and cook dinner.", shouted ever so sweetly at the top of her lungs. To resist my kill instinct I stayed put, but a few minutes later I heard her playing with the microwave. When I went out to ask her what the hell she was doing, she said she was just getting us some dinner, as though she does that every day. I reminded her she hasn't cooked in three years, and we were going to Wendy's for dinner anyway.

When we went out, and she saw the Real Estate sign, you know, the one that's been here for a week now, she said, "oh, I have a new sign!". When we went out the park entrance, where the Real Estate has a sign for our place for "lakefront property", she said, "oh, our park has a new sign. I've never noticed that before." When we came back she said, "oh, we have a new sign on our house. Are we selling the place?"

Tonight, Wednesday, is Bingo night, as it is every Wednesday. And we go through the same turmoil each and every week, about money, dabbers, purse and so on. Every single week she wants to call her friend to tell her she's not feeling well and won't be going, then her friend calls her back to remind her about Bingo and she goes. Today she asked for the phone to call her, cause she wasn't feeling well, and I said, jokingly, that she calls her every week to tell her that. That set her off, yelling at me that she goes every single week and has never ever called to cancel. Fine. This week, her friend didn't call back for some reason, so Mum asked me for Nancy's number. I said it was on the table by the phone. When I heard the cursing I went out to see what was wrong, and she was mad because she couldn't dial the phone. The reason was because she was trying to call her on the TV remote control. I told her it would work better if she used the phone, which she did. She said her friend sounded disappointed, so she would go.

So then we get to go through the whole turmoil of money, dabbers, coat, purse and so on. It only took about five trips down to her bedroom to get everything. When I asked her to get her coat on, she said she wasn't going to bother to wear it because she had her sweater on. It's about minus ten degrees out, so that was a very bad plan.

Just another day in paradise!

What a sad system!

It's now been three weeks since Mum's status was upgraded to "emergency" first available bed. Some emergency, eh? I even have our provincial MLA's office calling them every day to find out if a spot has become available. When I first contacted them it was to see if there was any way for me to get any assistance to help us survive. They ran into the same roadblock - that I "chose not to work". Talk about out of touch with reality/. Like I have a choice? Failing that they said they had some "special contacts" who could get around the system, and get her treated as a priority. Yeah, right. Three weeks later and nothing.

Mum has her good days and bad days. She's still not eating hardly anything and wasting away. I asked my sister to follow the advice everyone has given us about taking Mum into the hospital, then refusing to take her back when they want to release her. It's a sad way to do things, but everyone who has had anything to do with an Alzheimer's patient says this is how it works, or doesn't. My sister has been in denial ever since Mum was diagnosed, and nothing has changed. One of my Dad's biggest disappointments was that Wendy would not take the few minutes to watch the video Dad got from his care givers group - a video that explained the regression of the disease and how it affects caregivers. She refused, and it hurt him. Since Dad passed away, all Wendy sees is that she comes down on the weekend for a day, and takes Mum out to breakfast and the casino and bingo - party time, and Mum is okay. She doesn't get to see the "joy" of the rest of the week, when Mum is lost and crying all the time and shaking and upset and terrified. No, she doesn't have to see the reality.

A good friend went through this with her Grandma, and she warned me against leaving it too long, like they did with her. She bounced around the various aunts until no one could take it anymore, then they put her in a care facility. Every time someone visited her she cried and apologized for whatever she had done wrong to be "punished" like this. She had gone too far to be able to understand that this was best for her, and she wasn't being punished for anything. Celia said it's hard, but don't leave it until Mum is like this. Get her into a facility while she's still able to comprehend what it's all about and can enjoy it for a while at least. It would be nice if my family had enough understanding of the disease to be supportive instead of just constantly criticizing. Those of you who look after an Alzheimer's patient know all too well how tough it is without getting additional crap from your own family.

It's sad to watch someone you know and love, who was so full of life, waste away in front of your very eyes. The worst part with Mum is that, although she is 83 years old, her overall health isn't that bad for someone that old. She beat cancer in 1991 and she's stayed pretty active and healthy. Now, the confusion and upset of losing her mind is affecting her health by her refusing to eat. This will only get worse as she loses her grasp on reality more and more. It was heartbreaking to listen to her answer questions on her last assessment by Interior Health. She doesn't know how old she is; she said it was fall; she said her health is excellent - she's "eating like a horse", and her memory is "excellent". The saddest part of Alzheimer's is that they even forget they have Alzheimer's.

A new low

Those of you familiar with the regression of Alzheimer's know there are various stages of the disease - each worse than the previous stage. My mother has been a stage two for years, but has recently gotten worse. Because of our worsening financial situation I had no choice but to take on a job for a friend, removing sod and planting cedar trees for her - a brutal job and one I had to be away from Mum for, obviously. It wasn't far away, and I only worked for a few hours at a time, coming home to feed her and check on her. On Saturday, my sister was coming down from Revelstoke, and I had written a note on mum's "memory board" reminding her what time Wendy would be here. I reminded her I was on my cell if she needed me and left notes with my number.

When I came home around five, a neighbor came running up to tell me that they had found her wandering around the park, scared, and that she was at a neighbor's house. The front door was wide open and she only had a sweater on when they brought her home. I asked her why she had left, and she said she was scared. When I asked of what, she said she didn't know. When I asked why she hadn't called me, she said she forgot. When I asked about the note that Wendy would be here any minute, she asked, "what note?" She had wiped her board clean and put it away under the coffee table. She denied there was any note.

I was thoroughly exhausted after this brutal work and needed to lie down. I told her Wendy would be here soon and that I had to sleep. She came down to my room every five minutes and knocked on my door, crying and asking me to come and sit with her because she was scared. Needless to say, I got no sleep.

She has become terrified whenever I have to go out, even for a few minutes. She starts crying and begging me not to go. She wants to know where I'm going; when I'll be back, and why I have to go. It's suffocating and a repeat of exactly how she was with my Dad. He couldn't as much as go to the bathroom without her wanting to come with him. I knew that was tough on him, but now I know just how tough.

Interior Health has now escalated her need to an "emergency" first available bed status, whatever that means, compared to the eight months her previous "first available bed" status got us. With her deteriorating health, not eating and the pills not working, and having no strength or energy, she'll get more and more critical as the days go by. With her elevated blood pressure these new developments will no doubt increase her danger level. She refuses to quit drinking, although the good part is that she had five drinks in the fridge recently, forgetting she had made them.

One tiny bright spot is that we did go to the show on Tuesday. It's the one thing she seems to remember and look forward to. She asks me every day if it's Tuesday so we can go to the show, so she's right one day out of seven. Although we had already seen it, my friend wanted to see Walk the Line. I suspected that Mum would not remember seeing it, and I loved it enough to see it again. After the movie, when she said how much she enjoyed it, I joked "more than the first time you saw it?". She couldn't believe she had already seen it because she didn't remember a thing.

Sidebar humor: when we left the house she asked if she should bring her purse, to which I said "no", she didn't need it, so naturally she brought it. When we got to the restaurant to meet Crystal, she asked if she should bring her purse in, and I said "no", she didn't need it. While we were eating, she started looking around where she was sitting, and, when asked, said she was looking for her purse. Crystal told her it was in the car. When we left the restaurant, she said she thought she left her purse in the restaurant. When we got to the show she asked if she should bring her purse, and I told her to leave it in the car. When we were in the theatre, she was looking around for her purse, and Crystal told her it was in the car. When we left the theatre, she worried that she had left her purse in the show. Damn purse.

She was going to Bingo Wednesday night, so I asked her to get her dabbers and her pouch to be ready. When she got to her room and I heard her opening drawers and swearing, I reminded her she was looking for her dabbers and her pouch. She asked why? I said she was going to Bingo. She asked if I was coming with her, and I said "no". She was in the living room and I asked her where her dabbers were, and she asked why she needed them. I told her she was going to Bingo, and she asked if it was tonight. I told her to get her dabbers. She was banging around her room, crying and swearing and muttered as she went down the hall that she wasn't feeling well and wasn't going to Bingo because she couldn't find anything. I went into her room and the six dabbers she has were sitting on her dresser. I gave her forty dollars and showed her that I put it in her hip pouch. That was around four, and she only asked me seven more times to give her money for Bingo, in between asking if we were going to the show and why were her dabbers on the table, and if we were going out tonight.

When I went to take her to Nancy's she asked if I would give her some money, and why I wasn't locking the door behind us when we were going to Bingo.

You gotta have patience and a sense of humor to keep going.

Christmas 2005

The Beatles sang “So This is Christmas”. Oh, so very fitting for Christmas 2005 – the worst Christmas in my life.

It was going to be hard enough with being the first one without my Dad, on top of missing my kids as always, as I have for over ten years now. I miss them terribly every single day of the year, but Christmas always stirs up those very fond memories of great Christmas days gone passed.

I guess I am a traditionalist in that I believe in all the trappings of Christmas – Christmas Eve with family and friends; opening that one special gift on Christmas Eve; the excitement of Christmas morning opening all the gifts, having a special breakfast (which I always cooked) and then enjoying the gifts everyone got, and looking forward to a wonderful Turkey feast for Christmas dinner. All so wonderful! Made you feel all warm and fuzzy inside.

This year? Well, the first challenge was money. We have been struggling and getting worse and worse with each passing month, to the point we ran out of oil last month and froze. There was certainly no money for Christmas gifts and celebrations. Instead that “shopping time” was devoted to desperately trying to get financing to just survive a few months longer, but no luck. Well, I thought, we’ll just do the best we can. My sister said she would look after the dinner but we couldn’t have it Christmas day because they were leaving for Las Vegas for ten days Christmas morning. Oh well, not so bad to have it a day earlier, I thought. We’ll still have the joy of Christmas morning together. Then the dinner became Friday, because that’s when everyone could come. Not very close to Christmas, but we’ll still have Christmas morning, right?
And it would be nice to have her look after everything for me, and give me a chance to relax a bit and enjoy Friday at least.

The fist item on the “help” agenda for Friday? They went to the casino and left me to wrap presents, clean the house, start the turkey, and do the recycling, burn the Christmas music CDs and food shop. I had also asked Ron to bring in some bags of pellets for the stove because I’m not supposed to be lifting after my surgery. Of course he didn’t so I had to get on my belly under the trailer to drag out the heavy bags, hurting my stitches in the process. Then, when they finally came home, Ron took off to wash their brand new car, and Wendy asked me to get the liquor and cigarettes for them, and shop. It was a madhouse and not something I thought I would be doing, what with all this “help”. Oh, on top of it, the guy came to pick up the firewood that I had sold to try to raise some money. Did I get any help from Ron loading the firewood? Nope. When everyone got here, I was still rushing around and trying to get dressed to spend some time with them.

Because this was Mum’s last Christmas, at least in her home, I had arranged for a video camera to record it for her to remember. It lasted all of five minutes on the Friday night when everyone was here, so that idea was toast.

Someone suggested we open one gift while everyone was here. Although it certainly wasn’t Christmas Eve, I agreed that anyone who couldn’t be here Christmas morning should open one. That was when I found out we were opening all of the gifts on this, I guess, “special” Friday and not Christmas morning. Not impressed, but no point in upsetting everyone who obviously didn’t care that it wasn’t Christmas.

My buddy Wade had driven seventeen hours to get here and spend Christmas Eve with me and our friends. I said I had to be back early in the morning Sunday for opening gifts, but this changed of course when we opened them all early. I still wanted to be home to cook the special breakfast that I had managed to scrounge up the money for and planned to cook for everyone. After they went to the casino on Saturday to spend money we don’t have, they informed me at three o’clock that they were leaving right then. When I said I had plans for Christmas Eve, they said they had to “get going”, so my night was toast as well. And breakfast? Well, there’s lots of food.

My buddy Wade, such a true friend, first gave me three hundred bucks to help me out. Mum thought it was for both of us and promptly divided the money in half. I tried to explain that it was money from Wade to help me out, and she insisted it was for both of us and I wasn’t getting any of “her” money. Then Wade phoned his Mum in OK Falls to ask if there was room for two more at the Christmas table dinner because my Christmas had been wrecked. Of course, Bonnie said there was always room at her table. Well, at least something to look forward to.

So Christmas morning was just like every other morning of the year, other than Mum searching for the money she insisted she didn’t have; asking over and over it was Christmas and who did she get this gift from, and where did she put the gifts, and bitching that she didn’t have a “cent” and might as well be dead when I told her she doesn’t have any money, and, well, you get it. At least I had that dinner to look forward to.

Seeing as how she has had the same clothes on for three days now, I asked her to pick out some nice clothes for our dinner. She asked what’s wrong with what she had on, and I said she had worn them for three days now and has lots of clothes, and it would be nice to put something special on for our dinner. She said her clothes were perfectly good and she wasn’t going to change them for anybody, and said I got out of the wrong side of the bed, and she wasn’t going anyway, and that was final. So, the one final shred of any Christmas magic I had left is gone too.

So how special was my Christmas? Undoubtedly, the very worst in my entire life. I hope yours was a whole lot better.

Worst day yet..

The best laid plans. I was scheduled to take a Business Development course through Community Futures, starting next Monday and running four weeks. This would not only have helped me to realize my dream, but would have provided EI for up to forty-six weeks, which would certainly have helped.

As all of you know all too well, no one pays you to care for a relative with Alzheimer's. It's been five and half months of zero income and this is very hard. I was originally to take the course in early June, but, of course, had to cancel when my Dad passed away and I had to care for my Mum full-time.

It is painfully hard to arrange care for an Alzheimer's patient in Kelowna. I managed to get a precious daycare spot for her at Hawthorne, and arranged for the Handi-dart bus to bring her home at night. My sister was coming down from Revelstoke to take her there Monday morning, stay with her a while and then pick her up at night. She then said she was too busy and could not come down, leaving Mum to me. On a recent assessment of her condition she told the nurse she wasn't going to go to daycare - that she just fine on her own. The nurse tried to explain to her that she cannot be left on her own, but she would have none of it. She said she was at the age where she could do what she wanted to, and she wasn't going anywhere. The nurse suggested we take her for a short visit on Wednesday to meet the staff and show her how much fun she would have. She arranged a spot on Wednesday and Thursday and also arranged for one of the care workers she likes to be there Monday and Tuesday morning to meet her.

My sister called her to explain how important it was that I take my course and that she would have fun at Hawthorne. She sent her an email confirming that she had agreed to go, and that she understood how important it was to go. Wednesday morning I asked her to get dressed to go and she asked me where she was going? I asked her to read the emails again and reminded her she had agreed. On the trip in she asked me several times where we were going and when I explained everything again she said she wasn't staying there. We met the staff and they were terrific and Mum said she had a great time. The staff all said they were looking forward to her coming again, and Mum said she would.

The next morning I asked her to get dressed again and she said "why"? When I explained where we were going she said she wasn't going anywhere. I explained that she didn't have a choice and that she had promised my sister that she would go, but she flatly refused. I said we had an appointment and that she had no choice but to go, but she wouldn't even get dressed. I called my sister and asked her to call, which she did and she sent another email. On the way out the door she asked me where we were going and I said into Kelowna. I had to stop for gas and she asked me several times before we stopped where we were going. I asked her to read the emails from my sister and she got very angry when she saw Hawthorne. She said she wasn't going to go, and if I dropped her off she would just "thumb home". No one could make her go and she wanted to go home. She tried to get out of the car and, when I held her arm, screamed at me to let her go.

I lost it on the way home and told her I would have to cancel my course that I tried so hard to get into, and that she was being very selfish to not care how hard I had worked to get her into daycare. I asked why she thought I had been caring for her for the last five and a half months and she said it's because I didn't have a job. I asked if she knew why I couldn't work and she said it was because I was "f*ckin useless". I had to cancel the course, the daycare and the Handi-dart and try to reschedule her care workers. Luckily the care worker who was cancelled that day managed to reschedule and come so I could leave and calm down.

The care worker who had assessed her for care happened to call me when Mum was screaming at me. She couldn't believe the language or the things she was saying. When she heard Mum say "you can just get the f*ck out of here:, she said "oh, that must hurt". I said that it did the first time, but after about thirty times of hearing it, you get used to it. She said she has upped her care need to "first available bed" now.

The sad part is that the plan for Mum was good. She was able to stay in her own home and attend to daycare to see what they do there and to enjoy herself. We would be together for her last Christmas here, then get her into a care facility where she could still come home on weekends until her place was sold in February. With getting the EI from taking the course I would be able to hang on until the house was sold. Now she has refused to work with us and will be confined to a care facility and not able to come out. All of this earlier than planned or wanted.

The perversely good part is that she has lessened my guilt at putting her in a home. No matter how hard I have worked to make her happy these last few months, and believing she is better off in a facility where she will get the care she needs, I still bear the burden of putting her into care. Now, she has made this choice the only choice, and this relieves some of my guilt.

Giving my site a purpose

Not sure about this idea, but maybe it will help others in my situation. I'd like to devote this part of my site to helping caregivers who deal with a family member who suffers from Alzheimer's. Maybe some shared stories and ideas will help others to cope with this terrible disease. Worth a try anyway.

My Dad passed away last May and my Mum has Alzheimer's, so I had to drop my life and move in with her to care for her. The only other choice was to put her in a home, which would have killed her after just losing my Dad after 58 years together. Living with a person with Alzheimer's brings difficult challenges, especially when it's someone you know so well. It's tough to watch them waste away slowly. My Dad was really struggling with being her caregiver. He had little patience and constantly blew up at her, always saying "I've told you ten times!", which, of course, doesn't work with an Alzheimer's patient. I have learned unbelievable patience since I took on the responsibility, but it's hard. My Dad believed he had to be here 24/7 to care for her, but this drove him nuts. He waited on her hand and foot, and expected nothing of her. Other than the Alzheimer's she is perfectly healthy and capable of many things. I did things a little differently, like not serving her like a slave. She got her own coffee and breakfast (no cooking, of course) and I expected her to do whatever she was capable of in my mind. She responded well, putting on twenty-five pounds and becoming more independent in the process. But there are still challenges, mostly that they say Alzheimer's patients take it out on the one they love, and this is very true with my Mum. She blows at me for nothing, and can be very cruel, which is not like her at all. I've been thrown out at least twenty times so far. People keep telling me to not take it personally, but that's easy to say, hard to do.

Anyway, I'd like to make this a forum for people in my situation to vent a little and offer any constructive suggestions they have for others. For example, I got her a "Memory Board" - a write on/wipe off white board on which I write important stuff to remember, so that she doesn't ask me ten times. If she has a doctor's appointment I write the day and time on the board. It's simple but it works. If there's anything that comes up during the day that she has asked me a couple of times about, I write it on the board for her.

I guess another purpose here is to share thoughts with other people who know what caring for an Alzheimer's patient is really like. So many of my friends say they understand how difficult it must be, but they really don't know unless they have experienced it first hand. There's also come practical suggestions we can use. For example, I made all of the arrangements for my Dad's service, which we held in the mobile home park where he lived for thirty years. My Dad wanted no tears, so we had a celebration of his life. Lots of pictures, food, music and laughter and everyone who came out said it was how they wanted to be remembered too. The next day my Mum asked if she was there? She couldn't remember even being there, let alone anything that happened. No one, including me, thought to video tape the service for her to watch and remember. Very tragic and such a simple solution.

If you are in a similar situation, please share your thoughts with us.