How the end came

I thought Mum would go on forever. It never occurred to me that she would die. I had planned on her living at the nursing home for at least another ten years.

Twelve weeks ago, Mum had a series of minor falls. She just had a few bumps and scratches but on one occasion she went to hospital and had a brain scan just to be sure as she'd hit her head.

About six weeks ago, in June, Mum started to sleep a lot more. I stopped taking her out in the car because I could never wake her up enough. Instead I put her in the wheelchair and took her upstairs to the nursing home library which has lovely views of the escarpment, and made her cups of tea, which she rarely drank.

During this time I was making a mental note of all the things she'd never do again and I felt sad. I knew she'd never come to my house again and sit on the veranda drinking tea. She'd never go out in the car again. She'd never have another conversation with me.

Three weeks ago the nurses put a wheelchair in her room to take her to the dining room as she had stopped walking around independently. At meal times she was more or less still asleep but could be roused enough to get her to eat, but with her eyes closed. I think a stroke had affected her level of consciousness.

I started to visit more often as it seemed to me she was dying, though the nurses didn't think she was. I started to complain to them that she was always asleep when I visited and they called the doctor. He decided to reduce her medication to see if she could be woken up.

After a few days she still hadn't woken up and it was clear to me that she wasn't asleep, but unconscious, and had been for weeks.

I took a cat in to visit her to cheer her up. I think she was aware the cat was there.

She was beginning to refuse food, too, shaking her head and gritting her teeth. One of the last things she said to me, a few weeks ago, as I was trying to feed her one Sunday night, was, "Don't do this to me Louise." She meant 'don't make me eat'. There was a time a couple of years back when she rarely recognized me but the last few weeks she always knew who I was.

The nurses decided to call in the palliative care team a few days ago. I kept feeding her ice cream which was the only thing she was prepared to eat, until Monday 13th July. That's when her level of consciousness was so low that I couldn't wake her enough to get her to eat anything.

From Monday to Wednesday, she was on a buprenorphine pump as she had been quietly moaning and may have been in pain. She had pointed to the top of her head previously when I asked if anything was hurting. This could possibly indicate a stroke.

When she was asleep, her eyes were open most of the time, but I think she was almost completely blind by the end.

On Tuesday I called Father Ross Naylor, RAAF chaplain, relieving at the local church. Coming back from lunch I found him sitting with Mum, holding her hand and singing the Galilee Song.

So I leave my boats behind 
Leave them on familiar shores 
Set my heart upon the deep 
Follow you again, my Lord

In my memories, I know how you send familiar rains 
falling gently on my days, dancing patterns on my pain 
And I need to learn once more in the fortress of my mind, 
to believe in falling rain as I travel deserts dry. 

On Wednesday morning, 15th July 2015, one of the nurses rang me and said her breathing had changed and had become laboured. I went straight there and though her breathing wasn't all that noticeably different, it was a bit heavier.

My son, daughter and son in law came soon after and we stayed with her all day. I noticed that occasionally her breaths were further apart. She'd stop breathing for a few seconds, throughout the day, from time to time. Every time she'd stop breathing we'd hold our breath too, waiting to see if she had died.

We put on the radio, ABC classical music, which she loved.

At 11.40 p.m., she took a long deep breath and stopped breathing. We all stood up and held onto her hands. There were a couple more breaths a few seconds apart and then she was gone.

We stayed with her for an hour and then we went home. It's been a week and it's very surreal. The funeral is tomorrow.

The Seventh Stage

I'm sure I mentioned in my second last post that Mum has definitely entered the 7th stage of Alzheimers Disease. 

She's become incontinent and usually can't put together a sentence that makes sense. In the past few months, she's lost the ability to write on a greeting card. Before that, her handwriting and spelling were excellent, which was very surprising for someone in the 6th stage. 

The staff at the nursing home had asked me to take her to a psychiatrist specializing in geriatric care because she had been grabbing other patients and dragging them up and down the hallway. For years she has been walking compulsively back and forth. The other patients weren't up to walking and were in danger of falling. When staff would try and stop her grabbing them by the arms and walkers, she would try to hit them, or tell the other patient to hit the staff members. 

But I have visited her at different times of the day the past three weeks and she's always been either sitting in a chair asleep or in her bed asleep. It seems the obsessive walking stage is over. I'm glad. I have never trusted psychiatry. On the other hand she shouldn't have to suffer so I don't mind her having the anti-psychotic that she's taking to try and settle her a bit. 

A lot of things have changed in the past couple of months. I no longer have trouble leaving her - she doesn't recall that I was ever there, within seconds of my being out of sight. Three months ago, when I would try and leave, she would grab me and plead with me not to leave her there, which made me feel terrible. But now, I just go. I don't say goodbye as I don't want to upset her; I just walk far enough away that she can no longer see me and I see that she's happy enough to just doze off. 

She doesn't ask to go to my house to see the dog and the cats. I don't think she remembers them any more. Last time she saw my dog, she was convinced he was a cat. 
I wrote about that two posts back. I've said a few of these things before but I just feel the need to go over it again. 

I notice she is having trouble swallowing solid food. She chews and chews and can't swallow. She really doesn't want to eat any more. There is no pleasure in eating these days, or even in having a cup of tea.

I don't think there is anything that makes her happy. For years she hasn't been able to stand having music on in her room. I took the TV away over a year ago because she'd just keep saying, "Turn off that horrible noise." She couldn't follow anything on TV, and that has been the case for about four years.

It's a terrible shame about music. She played 1st Violin and piano. She loved classical music and all types really. She was a ballroom dancing teacher. Now she can't stand to hear music. I suppose she hears it differently now. You know if you smoke marijuana, it does something to your ears-brain connection and you hear the music in a different way. Well, I guess due to the altered state of her brain, she hears the music in a nasty, cacophonous way. 

It's just terrible when there's nothing you can do to make someone happy. You can't chat to them; they don't want to hear it. You can't give them a cup of tea; it's just stressful trying to hold it and remembering to drink it. You can't turn on the TV or the radio. If you take them for a drive, they keep saying they're in pain: my back hurts, my stomach hurts, I feel sick. Take me home. If you take them outside in the sun, they feel cold, no matter how warm it is. Take me back inside - I can't stand this. It's cold. It's windy. It's horrible. In fact, it's a beautiful sunny day and 27C or around 80F.

I do have to start thinking of end of life issues. Perhaps the end is in sight; or perhaps the horror will continue another two or three years; who knows. But just in case, I am thinking about it.

She's not eating much so she shouldn't be forced to eat, but she should be offered drinks at every opportunity. If she refuses, it is her choice. I would never allow tube feeding, though if she were unconscious, I'd allow a drip so she'd be comfortable and hydrated.

She has had a few falls and is wearing hip and leg protectors. That's OK but I hope the staff don't worry too much that she'll fall. It's nature taking its course, I believe. She should be allowed to get up and walk if that's what she wants to do. She should be allowed to sleep in the daytime if she wants to, and she often does. I'm glad they don't try to make her stay awake. 

If you compare these three photos you can see the difference. The first is from a few months ago when she was still able to enjoy visiting me and the animals, drinking tea and eating cake. The second is from last month when the nursing home had a Roaring Twenties Ball. The third was taken yesterday. You can see the extreme stress and fear in her face. It's just terrible to see.

Happy on the veranda with Ned and two cats six months ago

Trying hard to enjoy herself at the Roaring Twenties Ball three weeks back.

And this week. 

I took my life back and started living again this year

Mum's Alzheimers was affecting me very badly. I felt like I, too, was just waiting to die. But something happened that made me want to live again.

I don't say much about how I am feeling. But I felt like my life was over. There was nothing to do but watch Mum slowly dying.

I took in a uni student from Nepal. He moved into the granny flat that Mum was supposed to live in, but refused to even go in there and have a look at it. It was hard admitting that she'd never live there and at first I resented the poor kid, who was only 18.

Then he fell off his skateboard and had no-one to turn to for help and that's when I realized he needed a Mum. Poor little bugger. He had a dream to learn to drive and own a car one day. He also dreams of becoming a racing driver.

He wanted to drive and I wanted to teach someone to drive. I am a racing driver. Or, I was, years ago. And so we started driving lessons. At first, it was out in the country, on back roads, because he had to be in Australia for six months before he was allowed to get a learner licence. So we drove illegally, but it didn't matter because there was no traffic.

I'd pack our lunch and drive down the coast to Kangaroo Valley where we'd explore the farm roads. We saw kangaroos, wombats, snakes and echidnas. We'd get out of the car and take photos and videos of the wildlife we encountered. We had such fun. I had forgotten what fun was. We had so much to talk about. I think we were mother and son in some other life.

I had a Volvo station wagon, automatic. Not very exciting for someone like me who loves cars. Eventually the Volvo's engine died, about a year ago. The student said to me, "Why don't you get a car you can race? I can come and help you and be your pit crew."

At first I thought no; I'm too old to race now. Then I got excited by the prospect of entering some hillclimbs and supersprints. I bought a fast BMW and got my racing licence back.

This year I've been competing in the car club championship. I've done very well and have a lot of trophies. The student comes with me and helps out. He absolutely loves it. He still doesn't have his licence but he's going for it in a few weeks. I found him a good part time job and he's going to buy a car soon.

We have driven all over New South Wales. We have done tens of thousands of kilometres. I have taught him advanced driving techniques including defensive driving and I've taught him to drift. When I watch him drive, I see me and it makes me so happy to see what I have achieved. We drive the same way. I also taught my 'other' two kids to drive this way - very expertly and competently. 

To be doing this at my age is so amazing. I am alive again. I am me again. It is like a miracle.

Me in my twenties

At Cooma Hillclimb last weekend

Learner Driver Adventures

Hillclimb

Two trophies

The food's not what it pretends to be

Sometimes Mum says funny things. I took her to McDonalds, which she used to love, to try and get her to eat something. She had a lot of trouble with her cheeseburger. I asked why she wasn't eating it.

"The food's not what it pretends to be on the packaging," she said. So true.

She doesn't seem to be enjoying anything any more. I still take her to my place for the day. She's got a lot more quiet and doesn't pace around as much at sundowning time.

I think she's starting to have trouble swallowing. She chews for a very long time, then doesn't want to swallow the food.

She finds it easy to eat ice cream and drinks.

She is also getting very difficult to understand at times. Her speech is becoming garbled. She says sentences that make no sense at all.

I asked her to write on a birthday card the other day and she just put a few lines and scribbles on it. A couple of letters were decipherable.

She usually knows who I am, but probably no-one else at this stage. I am guessing she has reached Stage 7 Alzheimers.

Very severe cognitive decline
(Severe or late-stage Alzheimer's disease)
In the final stage, individuals lose the ability to respond to their environment, to carry on a conversation and, eventually, to control movement. They may still say words or phrases.

At this stage, individuals need help with much of their daily personal care, including eating or using the toilet. They may also lose the ability to smile, to sit without support and to hold their heads up. Reflexes become abnormal. Muscles grow rigid. Swallowing impaired.

I am terrified of this disease. 

Ned's having some sunrise

Mum says some cute things at times. The dog was lying in the sun yesterday and she said, "Ned's having some sunrise."

And later when Ned was sitting at her feet, "Ned's purring at me with his purrs." I didn't know dogs had purrs but come to think of it, maybe they do.

I took her to the geriatrician yesterday. She can still fake the psychological test. Do you feel sad? No. Are you happy with where you live? Yes. Do you ever think life isn't worthwhile? Never.

He needed her to undress so he could examine her. I told him she could neither dress nor undress. "Yes I can!" she interjected. And she did. So why is it when I want to shower her she can't even help me undress her?

Oh.

The pains in the chest and stomach are probably gastric reflux, so he's written a prescription for that. The elevated iron levels often happen in the elderly and can be due to an infection.

I took her to the optometrist the other day to get her ingrown eyelashes removed before they gouge into her eyes and cause infection and scarring. She wouldn't let him anywhere near her. It was awful. He managed to get two of thirty or more out.

I asked the geriatrician what to do. He said we should give her oxycodone before the appointment. Good idea.

I'd thought of trying hippie lettuce but that sounds even better. But I guess I'll be carrying her in and out. Reminds me of Granny in The Beverly Hillbillies.

Yesterday she had no trouble getting her seatbelt on and off and opening the car door. It's funny how it comes and goes. She even remembered I have a student from Kathmandu living in the granny flat and asked me where he was today.

She's back on the antipsychotics. They just couldn't manage her without chemical restraint. She grabs other residents who are unwell and tries to drag them with her as she obsessively paces the halls.

What a way to finish up. In jail having committed no crime. It isn't fair.

                          Beautiful Barney the greyhound, Adelaide, 2011

                                                  Ned purring his purrs
                                                  and having some sunrise

April 2014: Reminiscing about poor Ned as a puppy

Mum is 87 now. I'm not sure how long she's had Alzheimers Disease but it's probably close to twelve years. I keep looking back and recalling weird symptoms that I would now pick up on, but didn't then. For example, for a few years before she started behaving extremely weirdly, she was paranoid about my brother's cats. She said he never fed them and they would die. So every time we visited, we had to buy large bags of dry food and hide them in various sheds on his property, open at the top, so the cats wouldn't starve to death. He had four or five of them to keep down the mice. At the time, I believed her 100%, that he was cruel to his cats and never fed them, or he forgot to feed them. It was most unlike him, as he'd loved cats since he was a little boy, but who was I to disbelieve my mother? She was only in her 70s so I never suspected anything was wrong. But now my sister in law tells me it was all in her imagination. They never forgot to feed their cats. They'd have to go round and gather up all the cat food after we left or it would have attracted more mice.

She wanted a watch dog when she was living in her own house. She asked me to find her one. This should have rung warning bells - she didn't like dogs much - she was a cat person. And so when my Kelpie and his girlfriend across the laneway, a pure bred Border Collie show dog, had pups (accidentally), I got her one and we called him Ned.

I was working full time and didn't realize what little Ned was having to suffer. At eight weeks of age he was being barricaded as far down the back yard as she could get him. She was telling people, "That dog is giving my cat asthma attacks!" The stupid cat was hissing at Ned and scratching his face. And, "That dog is giving my cat a nervous breakdown!" The poor little thing was never being patted or played with, was never allowed inside and was being yelled at all day long and told he was 'bad'. 

It was three months before I realized what this was doing to poor little Ned. He became scared, withdrawn, depressed and anxious. I took him to live at my place. He's eight years old now and still has problems. He has no confidence and always looks unhappy. I feel terrible that I did this to him. I trusted my mother. I had no idea she was going crazy. But this paranoia about needing a watch dog and then the puppy ruining her cat's life should have rung warning bells.

Don't necessarily look for memory problems in your elderly relatives. Look for weird behaviour, especially paranoia. Mum had no memory problems at this point and didn't have any for years. It was all crazy behaviour. Barricading the front and back doors inside the house with furniture. Cutting up her good clothes to make 'rope' to tie around door handles and gates. "I couldn't find any rope and I couldn't let them get in so I had to cut up my clothes. I didn't want them, anyway."

Dialling 000, calling the police, telling them she had intruders - that was another sign. There are people walking around my yard with torches. There is a man in a trench coat outside my bedroom window. Again, there was no memory loss at this early stage. 

Anyhow, here is a picture of Mum and Ned, taken last weekend. She was the first owner he bonded with so he still gets wildly excited when I bring her home on Saturdays and sits at her feet for hours. These days she's not so interested in cats and her cat obsession has disappeared. She will actually pat Ned and talk to him. I don't know how much he remembers of the horrible way she treated him when he was just a baby. 

What are the names?

Yesterday I had to take Mum to the skin clinic. She's so quiet these days. She used to like music but if I turn the car radio on she usually can't stand it and wants it off. She hardly says anything because she can't think what to say and she doesn't get angry any more. I must get the doctor to look at the Risperidone and see if she still needs it. I don't think so - I think the aggressive stage is over. It's so sad to see her so quiet and to recall all the things she'll never do again. She'll never see the snow again because it's a six hour trip and we have to stay overnight. It's impossible for me to manage her overnight and as well, it's not good to disturb her schedule. She gets confused. So many things she'll never see again, never do again. So many people she'll never see again, because they don't want to 'see her like this' and want to 'remember her the way she was'. How cruel.

I took her to see her best friend down the coast two weeks back. The friend turns 90 soon and has few signs of deterioration; she still plays tennis. Mum had a nice chat to her but wanted to leave after half an hour. She just kept getting up out of her chair and saying, "Well, I have to go now, it's getting late." The friend was disappointed but understanding.

On the way to the doctor yesterday she said, "What are the names? I suppose I've forgotten them all by now." 

This was a rare moment of recognition of her disease. 

I knew right away that she meant names of family members, so I went through them for her. You have a son, *******, I am *******, your grandchildren are.......

She was happy to hear their names and recalled them. She remembered some things. "Patrick is very tall." "******** goes to university." 

I just feel so sad about it now. Before, she was behaving so badly I didn't even like her for a long time. You can't forget the terrible things they say - "I hate you" "Get out" "You're not my daughter any more" - but now all she says is "I love you so much and I'm so glad to see you." What a change. 

Mum on the right in about 1940

Mum in November, still beautiful

With dear Father Leo Stevens when she was 60 years old