2017 - will be a big year i think

I have been thinking about time lines lately, and when Mum was diagnosed and how long had symptoms been there before things got bad. I will endeavor to write it all down to serve as a reminder

The week before Christmas we went out for lunch with Mum and Dad. He suggested a place, and it seemed nice, but not appropriate for mum.  He had been there within the last 6 weeks, and still didn't grasp that the food was unsuitable considering her abilities and needs.

She needs to eat something simple that can be eaten with a fork or spoon now.  Instead this was a place where it was platters of dips and pates, and breads and miscellaneous stuff. She was so confused. She didn't know what to do with what, there were so many things on the table, she wanted to touch everything. In the end, dad had to put all the bits of finger food in her mouth with his hands. He had to put the dip on the bread and feed her like a one year old. She didn't know what goes with what, and got dip on her fingers and under her nails. It was humiliating for her.  He obviously doesn't think about choosing a place that has a simple array of foods. A single bowl, a single fork or spoon is what she needs. If given a knife and a fork, she just taps away at the plate without a clue what to do. Take the knife away, and she can eat independently with little help. If there are lots of things on the table (sauces, condiments, extras) that causes confusion. She doesn't know what is hers, what is shared and what is somebody elses.

Then last week, they came to visit us for the day. He didn't bring her tablets, so she missed her lunch time tablets, got agitated, and was in pain, and it couldn't be remedied. So the visit was miserable (again). She was in tears and they ended up leaving. I'm not sure why he thinks it is ok, at this point in the game to be missing lunch time tablets and delaying them for 5 or 6 hours.  Of course she is going to get confused and agitated when the drugs wear off, and aren't topped up. To leave the house without her pain tablets and her lunch time and afternoon tablets is very obviously going to cause upset for her, and then more drama and work for him in the long run.

She obviously is struggling to toilet herself and needs assistance with that.

The time has come when she needs to be in permanent residential care. Dad is unbearable. Friends and family are dropping like flies, and he continues on. He doesn't understand that everyone is burnt out from this, and that is why they pull away, he takes offence to it. He doesn't understand that people don't visit as much because it's not anyone's idea of fun to spend time with them. It's purely obligation and guilt and pity that drive people to visit. If he lets it go on too long, he will wake up and have nothing left.

He sent me a new years message that said "looking forward to a better year this year".  I wonder if he is blind to the facts or trying to block them out.  The facts as I see them are; this is quite probably going to be the worst year in his life to date.  This is going to be the year that he will need to make the decision to put mum in permanent residential care.  And then once he makes the decision, he will have to decide to either lie to her in order to save her some of the anxiety and stress leading up to that date, or decide to tell her the truth and deal with the consequences of that. Then he has to actually go through the process of putting her in a home. Then he has to go home alone and deal with that, think about what he is going to do with the rest of his life and proceed to mourn, grieve, visit etc. It's going to be horrendous, much much worse before it gets any better. Bleak.

One Way Street

So Dad decided to put mum into respite again this week, for mothers day weekend.

I hadn't spoken to them in maybe 2 and a half weeks, and obviously Dad is annoyed at me (to say the least). I got a (another) phone call telling me that I'm not offering any support and that he is is on his own, and it's a one way street.

This is all quite usual, when he can't deal, he rings me and has a go at me for not doing enough. Quite frankly I'm over it. I'm over being the worst daughter. The other daughter lives on the other side of the world, and I'm the one who's been here for the last 5 or 6 years through all of this hell, and I'm the one who cops it.

So he expects me to come and travel 4 hours to see her for mothers day and quite frankly, i'm feeling depressed. I'm feeling anxious, and I'm feeling like I just need a mothers day for me this year. Life has been on hold for the last 5 or 6 years. When can I just let go of these obligations and expectations and live my own life, for myself and my immediate family? Why do I have to have a miserable mothers day every mothers day? Why do I have to have a miserable Christmas, Easter, etc. etc. because I'm obligated to spend it with my parents, knowing full well that it will be miserable? Will it be one more year, five more years, ten more years? Will I ever be able to let go of my responsibilities and just do what I want?

I am at the point where I need to say no. I need to look after my own mental health, and prioritise myself, and my children, and my partner. And to do that, means to say no to everything else that makes me miserable.

Then I have to deal with the guilt of being the worst daughter. The guilt of, whatever I'm going through, what they are going through is so much worse.

But when I'm told that I do nothing, it certainly makes me think I've completely wasted the last five years trying to support, trying to be there, going to appointments, accommodating my parents for each appointment, because they live far away, and have stayed at my house probably 50 times in the last 5 or 6 years. Trying to ensure that I've included them in Christmas', Easter, Mother's Day, Father's Day, Birthdays etc. etc.

I just want to quit!  I've had enough!  Each time I visit them, or they visit me, it takes me a week or two to debrief and get over the experience, it is that miserable. I've been pretending and faking for years that I actually enjoy spending time with them because they are both miserable. They have no tolerance for me and my children and my partner and they don't appear to enjoy our company any more than we enjoy their company.

But, still, we persist. It's such a negative cycle.

Maybe it's time to put my foot down and look after my own mental health.

Maybe it's time to actually be the worst daughter, to actually not do anything.

Wow, so negative!

First Respite

THIS POST WAS FROM  QUITE SOME MONTHS AGO, I FORGOT TO PRESS PUBLISH SO THE DATE IS WRONG

Today mum went into a nursing home for her first session of respite. It was fairly traumatic for Dad by the sounds. I offered to go with him, but he thought it would be better to do it on his own. Apparently, the woman who had arranged the respite, took the day off today, so when they went in, nobody seemed to know what was going on, and they were stuck waiting around to find out details. Then after Dad cracked it at the staff for their poor organisation, the Matron of the nearby hospital turned up, and asked him "How's your mother going?" This sent mum into tears because, of course, she is not his mother, she is his wife, and she still has far too much mental capacity to let that one slip by un-noticed.

He was anything but impressed with their lack of empathy, and they didn't seem very well organised to welcome a new, young resident in with Alzheimers. Surely they need to have someone rostered on, who knows the story behind a person coming in for respite?

I hope Dad sticks with it, and holds out to give himself a break. I really hope he doesn't ring her every day and end up going in early to pick her up because she hates it. Because, it's inevitable, she will hate it, she will hate the food, she will hate being surrounded by people 15+ years older than her.

It is supposed to be 2-3 weeks. We will see how long they hold out. I guess, he will now need to realise that no nursing home is going to give her the same standard of living she has at home. Staff at nursing homes are generally low paid and with a low level of education and training. It's never going to be ideal, but it will be necessary.

Moving right along, like a freight train

So another Christmas has now passed, mum has deteriorated so much in the last 6 months. She now can't do much of anything by herself. She needs help to shower, to dress, to eat, to drink, to pick things up, she needs constant reminders to keep doing something because she loses track of what she was doing. She can't use a knife and fork properly and just taps them on the plate not really knowing how to operate them, she needs to just be given a fork or spoon and have the knife taken away to stop her confusion. She can't communicate well verbally anymore and when she speaks you have to guess what she's trying to say. She'll begin a sentence and stop part way through, needing prompts and often her voice is that blubbered that you can't understand the words she's trying to say.

She sleeps, alot. She sleeps about 10-12 hours a night, then has multiple naps during the day time. Usually at least a couple of solid hours in the afternoon plus multiple little naps whenever she is sitting down in a lounge chair.

Recently when I was at her house, she fell asleep twice whilst standing up. Once at the sink, I heard the water running for a long time, so came to investigate, and there she was standing at the sink with the head dropped, asleep. Then I told her to sit down on the couch, walked her to the couch, and then got side tracked. When the kids went in, they said she was standing near the couch, asleep standing up.

She is on methodone for pain relief, but even when that isn't taken, she is constantly sleeping.

The Parkinson's tremors seem to be amping up quite a bit. The balance is worse, stepping up and down from a small step or into a door with a small step is a big issue.

I've been suggesting to Dad all year that she needs to go into respite, but he has been refusing so far, saying that he'll get respite into the house, but won't send her to a nursing home for respite because she gets so upset at the conversation about it and she doesn't want to go. Even up to a month or 6 weeks ago, he wasn't interested in it. But obviously she has gotten alot more agressive towards him and he has finally turned the corner with that and has decided that she needs to go to a nursing home for respite.

She has recently had an ACAT assessment and we are awaiting the results, hoping that she will be now eligible for 12 weeks of respite per year. Dad has told me that he intends on putting her in some time in January whenever he can get her in. He has opted for a couple of nursing homes that aren't as close to home which is great. It indicates that he has listened to me, because she used to work as a nurse and in hospitals and nursing homes in their area, so I have mentioned that it would be a bad idea to put her in locally as there will be many people who would know her and recognise her and therefore humiliate her. If she goes to a place where she doesn't know anyone, there won't be any need for her to be humiliated. Where they live, is a country town, my Dad knows hundreds of people locally and they all recognise her and speak to her when they see her. I don't think she's that far gone that she won't care when they see her in a nursing home at her age (61 years old).

I'm really hopeful that this will work out well with the respite and will give Dad the opportunity to have a rest, let go of the stresses for a couple of weeks and get a bit of his sanity back. I imagine that by the time that another year passes, it will be time for mum to go into a nursing home full time.  I look forward to Dad being able to actually enjoy his life again and live a little. It's almost 4 years now since the Alzheimer's diagnosis and to be honest I hope that this next bit goes as fast as possible. The worst bit is when they still know what's going on, and understand how bad they are getting. Once they lose that consciousness, I hope she will be able to just relax a bit and let some of her tension go.

It's impossible to talk to her now. I don't know what to say, it's just so awkward.

I'd say that this year is going to be a tough year, the toughest yet in this journey.

It’s been quite a while

It’s been quite a while since I’ve posted.

I guess it’s just the time between crises.

Last week was another mini crisis. My Dad injured himself working, and had to have surgery, so I had to babysit mum for a couple of days at my house. It’s impossible because she is really deteriorating and now Dad does “EVERYTHING” for her.  When she’s not at home, she is really anxious and confused. I have to work, I work casually, in a new job, I don’t have the luxury of annual leave, sick days, family leave, any of that. I’m trying to get a permanency, so I have to accept every shift I possibly can and be reliable. I can’t let my family problems affect my work life at this point. I get home from work, Mum’s crying because she doesn’t want to be alone. The next day, crying because she doesn’t want to go into a nursing home. At 3am, I have kids coming into my room crying because they are scared of the noises she makes in her sleep. It’s anything but ideal.

The euthanasia debate sparks hot with me and my partner. No matter how hard I try, I just can’t seem to get him to see it my way. He understands that I am pro euthanasia, and thinks it’s a reasonable concept. But doesn’t seem to grasp that if you have dementia, you are out of the euthanasia game because of the mental capacity issue, so the only way to go would be to euthanaise yourself (or commit suicide). He can’t handle the concept of suicide. But can’t grasp that when you lose mental capacity, you tend to get medications forced upon you by your family or your nursing home.  You don’t get a choice, and it’s hard to be firm when you are confused and scared and lost and mentally incapable of thinking complex thoughts and following them through.

I have been saying for years and years, well before mum was ever diagnosed with alzheimer’s that if I ever get it, I hope I have the courage to euthanaise myself. He finds it horrendous, and thinks that me committing suicide would be worse than dragging my family through alzheimer’s again. I am so adamant that I will not live through alzheimers, and he is so adamant that I couldn’t possibly do that to my children. Even though I strongly feel that I’d be doing myself and my family the biggest favour by not dragging them all down with alzheimers again. I’ve been through it with my grandfather (when I was at school), with my mum and my grandmother inlaw. I know that it’s not what I want. I don’t want to be subdued with medications to make myself easier to handle. I don’t want to attempt suicide and then be put on the strongest anti-depressents and put into mental institutions. I just want to take the most humane exit and let my family get on with their life.  And then when I get this brick wall the moment I try to talk about it, I think, I can’t even have a rational conversation about my wishes, so I can’t even discuss it, if and when the time ever comes, because he’d just block me, stick me in a mental hospital at risk of suicide.

So, I’d just have to run off and do it without telling anyone and leave a letter, rather than risk being forced to not carry out my wishes.

My position is strong on this subject, it has been for decades. I’ve spoken about it long and hard with my mum, all through my life, up until now, I’ve  never wavered. And If my mother had the courage to “euthanaise” herself, as much as it would hurt, I’d understand that it’s not worse than 15 or 20 years of suffering through alzheimers. So, I’m on my own, and I know it if I ever have to face it. I know I can’t just fly to Switzerland and get it done professionally for a fee if Alzheimers is a factor. I know I can’t discuss it with medical professionals because it’s a no go zone. I know I can’t discuss it with my partner because of his catholic base beliefs. My children, well I guess I can talk about it over the years as a general conversation, and see how that goes, but in the end, it would be a detailed letter left hoping that eventually the scars would be less from my self inflicted “euthanaisia” than they would from 20 years of alzheimers care and torture. Surely the scars I have are going to be as deep if not deeper than the scars of a very logical, well thought out suicide.

Of course this is only if I get alzheimers, but it’s something I have to think about, because I’ve seen mum go through it, and miss the opportunity, I’ve seen her forced into treatment and medication and accepting that it’s not so bad, and it’ll all be ok. It’s not ok, not ok in any way whatsoever. Her life is miserable, plain and simple. Why would I ever subject myself and my children to what I’ve now had to endure twice. It’s hell. Death, as I’ve said a million times, and will likely say a million more, is the silver lining.

People find it so impossible to discuss the concept of euthanasia and suicide, but then they don’t have the tolerance to deal with the icky business of keeping people alive when there is no point in life. Honestly, my partner hasn’t been to the nursing home to visit his nanna (20 odd years with alzheimers and now 98 years old) he hasn’t been to visit in probably 3 years. But then he has the audacity to tell me that I can’t take matters into my own hands if this fate ever befalls me. I’m sorry, I don’t find that acceptable.  I don’t think that anyone should try and force life upon anyone who doesn’t want to live.

I know it probably sounds morbid, maybe anyone reading this thinks I’m already depressed or suicidal. I’m not, I’d just rather be treated like any good dog and put down once I reach my used by date, once my life has no quality or hope.  Life is not that precious that we should torture ourselves to placate our loved one’s fears and insecurities. Everyone lives, everyone dies, it’s just life.