This is a blog mainly for myself, I needed to write down what I was feeling, regarding our life, Mum and how her dementia affects me.
Today I want to talk a bit about something that has become close to my life unfortunately, the devastating mental disease alzheimers / dementia.
We have known Mum was ill with this suspected disease for 6 years or longer. Over and over the memory tests came back as Mild Cognitive Impairment. This basically meant early alzheimer’s or dementia. In the 20 minute assessment the memory team could “ tell “ there was no change to Mum’s failing memory. They wanted no information from us, they only gauged it on the list of questions they asked in every visit. Mum started at 80/100, then stayed on 70/100 for a few years. Then a few weeks ago, it had suddenly dropped to 50/100. The team have finally agreed there is a problem, so she was going away to decide on a diagnosis and a care plan. She asked if they felt that medication would help, Dad said he thought it would be. But as we can’t get any medication inside her will adding to the number help. She has 7 tablets daily, 2 are too big so Dad breaks them in half so she has 9 a day, but at the most she may take only 2 or 3.
I know I should be happy that we may have a diagnosis but to be honest, I came to except Mum had dementia a long time ago. Dad on the other hand has only recently accepted it, finally seeing what we’ve seen all along.
The memory team were returning for another appointment, to explain what they want to do now. I wanted to be there, Dad agreed at first but now has changed his mind, Saying it may upset Mum if I’m there. Personally I’m not bothered if it upsets her, I need to know what they think, I need to tell them things and ask questions but Mum wouldn’t be happy about it. But also she would forget about it eventually too. But Dad said no.
Now I have the trouble of getting Dad to realise the help available will be of benefit to him. Such as a gardener, I know they won’t have a cleaner, but they could use a laundry facility that picks up and delivers their laundry, lastly a big thing to help would be ready meals, freshly made, companies will deliver them, put them in your freezer and it contains all the vitamins etc you need. A big help would be to have a carer to come in, just to give Mum her medication, maybe she will take them for them, though I’m not sure. Online we discovered many people suggested crunching the meds up and putting them in yoghurts or scrambled egg, I told Dad this, he thought it was a good idea.
What always happens though is Dad changes his mind, I think he feels like he’s betraying her by making all the decisions on his own, he always says, I will discuss it with Mum. But Mum can’t make those decisions as she still thinks she is doing everything, gardening, cooking, cleaning, laundry. Dad needs to understand he needs this help and be quick thinking to reply to Mum if she finds out Dad has someone doing these chores. I can understand why Dad feels awkward, Mum has always been the head of the family and now Dad needs to do it. I feel frustrated because I feel I can’t do anything until Dad starts to help himself. But he’s more concerned with making sure she doesn’t get upset, if she finds out about these things, and she will throw a major tantrum but she would get over it and then forget about it. Of course this may mean, she throws a tantrum regularly if she sees someone in the garden, picking up laundry. But at some point Dad needs to stand firm and just do it. Maybe I’m being harsh about it, I just see all of this on the outside and so does Master, my Dad’s sister and even E has suggested it when he has been around to see them. I go through feeling guilty about feeling this way, I’ve tried putting my foot down, getting all the information for him, but its got to be him making the choices.
But why I needed to write the blog is how this disease can confuse me so much, like I know why she acts the way she does, but I still find myself questioning it.
Yesterday I went round to see them unexpectedly, Mum was in a lovely mood, like the old Mum, I always say, we sat in the garden and had a lovely catch up. Then we decided to go inside as it was quite hot out. She sat down and it was like a switch turned off, she started to doze off, Dad brought us a drink and I wanted to show them 2 videos that were of me getting in and out of Master’s new kit car. Now maybe she didn’t understand it, but there was no giggle or conversation about it. So it ended with me mainly talking to Dad. Though I always look at them both so Mum feels she is part of the conversation. But the switch had changed, if we tried to engage in a conversation, we got, I don’t know, I’m useless, I’m a waste of space, I’m just a midget, I shouldn’t be here, I’m just a little small shit. Mum never swears.
This is the time I lose patience, I will not pander to her pity comments like Dad always does, because I don’t think it works. Dad has spent years doing this, instead of almost telling her off, telling her she can’t be these things, with all she has done in her life. She can’t have no confidence when she’s been a teacher, plus gone on stage playing the piano for different choirs, even travelling Europe for choir competitions. This is not the disease talking though, this is how Mum sees herself, and has done all her life. Dad has never built up her confidence, he says, there there to her instead.
Now I’m a bit similar to Mum, I don’t have a lot of confidence, but what’s the point complaining about being small, or curvy, I am what I am, plus Master has never allowed me to pity myself, he doesn’t pander to my insecurities, instead he builds me up, the change in me since I started to go out with him, plus have his parents build me up too, my confidence is so much greater. Yes I don’t like going to new places or mix with new people, even people I know, I feel nervous, but soon I would relax into it. And I would chat with anyone, Mum would never do that unless someone comes to speak to her, she’s never joined in by herself. She will sit with a stoney, almost bitchy evil look on her face, which in all honesty, no one would feel like going to speak to this person who looks like that. Plus she’s of the age where you should make eye contact when talking, something a lot of us don’t do, we may be looking at the TV, looking around, on your phone, this annoys her, that’s when we get the pity talk. Again this has been Mum all her life, So all these things come out fiercely when the switch changes.
The pity talk began, Dad sensed it too, so went to make another drink, bringing Mum a glass of milk. “What’s that for ?” She asked quite nastily.”It’s for your tummy, it helps soothe it.” But I’ve not mentioned anything about it ?” She said. “You have sweetie, plus you’ve been rubbing your tummy.” Dad replied patiently. “Well if you can tell my tummy is sore, even though it’s my tummy, I suppose so. I must be useless because I don’t think I am.” She was very angry. Then Dad asked, “If I didn’t mind would I go home as he needed to have his afternoon nap.” I said “Yes of course, I was going to go now anyway.” “A nap ?” Mum said. “Since when do you have a nap. We never have a sleep during the day, what are you talking about.” She was furious. Dad tried to calmly, carefully explain that they did in fact have a sleep in the day. “Well we might have one if we are sick, but we never sleep in the day.” She started shaking violently, as Dad tried to say that he just needed a sleep today, trying to stop the conversation of having an afternoon nap. When the truth is Mum sleeps most of the day, and they both always have an afternoon nap every day. But it was too late, she was livid, like, how dare Dad suggest such a thing about them. Saying such a negative thing about them, we should be put down if we need an afternoon nap. I said I often have an afternoon nap, if I feel I need one, I will go to bed. This didn’t help.
So trying to change the subject, I said come out and see me to my car. We walked to the car, but I could clearly see Mum was really angry, I gave her a kiss and hug, saying see you soon, like I always do. I got a, yes maybe you will, back from Mum. I ignored the comment, I’m used to them, hugging Dad, I got into the car and saw Mum’s face still fiercely angry and her body shaking.
I drove home, waving to them until they were out of sight.
This is a usual typical visit to see Mum now, you have to be so careful with what you say so this switch doesn’t change, as once it’s gone, it could take hours before she’s back again. But I also know she would be asleep within 10 minutes of me leaving. Even though I know what causes this change in her, I still get confused by it. When I told Master and E they both said, you know what it is, why are you questioning it. I think it’s still me not accepting it fully, it’s horrible seeing this switch to her personality, one minute she’s Mum, next second she’s acting like this wild woman or she just sits there, like the shell of mum is there but no one is inside.
Anyway, I just had to write this mainy for me, it helps me deal with it better. Sorry to blog about a sad part of my life. Dementia / alzheimer’s really sucks.