Friday night Dad slept till 3am then started to scream out, he had wet the bed and needed to go to the toilet. Help him to the loo, he couldn't sit down, said he forgot how to, help him down. Verbal directing seems to help. Change him, have learnt to just put a towel over wet spot because some nights it can happen 3 times a night. I have to help Dad into bed, he can't manoeuvre himself down, so he sits on the side and I help him on to his side and roll him over. His legs, when I do this are stiff and up at a 45 degree angle, that's when he is on his back till I roll him over. At 4.30 the screaming started again. Go up to his room, ask what's wrong. Get told someone has pissed in this bed. Pull back the doona's and he has slipped off his nappy and pj bottoms but the bed is dry, help him to the toilet again. Get him dressed and back in bed. At 7 the screaming starts again, go to his room, tells me he can't move, I freak out...think stroke...but no it's Lewy taking hold of his body, help him to the toilet and back to bed. Then the 20 minute wakings begin, mmmm at this stage I feel like I have had no sleep, absolutely exhausted.
One morning about 3 am Dad was singing very, very loudly 'Waltzing Maltilda'.
Last night Dad slept till 4.30 and was screaming out, he was in the loo, wee all over the floor and his slippers and his pj's tangled over his slippers. I think he was trying to manage without waking me, which is really sad too. Around 8am Dad was in the hallway talking through my door, telling me he didn't know where he was. Get up, help him to the loo, direct him...wash hands, get your teeth, clean them, ready for brekky. But that bit later 1st waking by Dad helps me to feel not so tired.
I have noticed his eyes are becoming more and more glazed as Lewy takes over.
Last week I took Dad to the movies to see GI Joe. He really, really loved it, all the action. Dad loves action movies. Before we went in Dad went to the loo, was in there awhile, began to think need to get a man to check on him, when he poked his head through the door and told me to come in because there was no toilets. Next time we are out I will have to take Dad to the disabled loo and help him. When I think back, why did I let him go in by himself in first place...because he was quite good...until Lewy showed up.
The last few times I have had a shower, Dad gets really angry,...tells me 'I'm going for a walk', anger all over his face. This really throws me because it's so unlike my Dad. Takes awhile for him to calm down, sometimes till the following day. Last shower, I was using the hair dryer, have door open so I can hear Dad, and I sensed someone out the corner of my eye, it was Dad, still as can be in a hunched over kinda wrestlers stand and angry. Scared the hell out of me.
Because my Hashimoto's, an autoimmune disease makes me tired, some days really fatigued with aching muscles and joints plus because it has effected my kidneys I have high levels of uric acid which doesn't help so I had to get it around my head that until Dad's next respite stay, late September, I am in plod mode just doing the basic necessities to get through each day. I am exhausted, have a sore throat...really tired.
I miss spending time with my girls.
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Honey, you really need to get crackin' on that Assisted Living research--for your own health's sake!! You have to get your rest or you won't be much good to Dad!
ReplyDeleteI feel so bad for you because I know what it's like to not get any sleep/rest and feel bone-weary tired and sluggish during the day.
You need some help with Dad. Either Assisted Living or someone to come in and take care of Dad during the night while you get some badly needed sleep.
Please forgive my naivety "no1daughteroflewydad", I've only just joined Blogger today, so i don't really know the rules/etiquette of blogging, that and i'm from the UK so I'm not quite with the medical terminology/drugs etc. yourself and some people have mentioned within the lewy body blogs.
ReplyDeleteYour story hits home very hard for me (as well as some of the other accounts within Blogger) which is why I've joined.
My mother has Lewy Body Dementia, and it would appear to be in the later stages as well.
I have a meeting with our local social work department regarding care etc. with my mother tomorrow, and your blog has opened my eyes as to how things have progressed with your father and the similarity with my mother's current condition.
My partner, Lana, is well read in the symptoms/conditions of Lewy Body Dementia as she read up on it early on, whereas i did not, as i was too busy trying to remove my children from their mothers house for neglect etc. (long story short it took most of my time up and in truth i wanted to remember my mum as the really bright, intelligent person who taught me everything i know and not the raving lunatic that she had become).
To call my mum that is really unfair, especially considering how much she did for us while my dad and youngest brother where gravely ill, but the person i see before me isn't my mum, it is someone else who has taken over her body and is using it to cast doubt/dispersion/cause hurt etc. etc.
As horrible as it sounds, I hope the end is near for my mother, as it removes her from the pain and confusion she has with Lewy Body and Parkinson's and will put her in a better place.
Like I said earlier in my rantings, please accept my apologies for not being up to scratch with the etiquette of blogging, and I truly hope things improve for your situation as I know how horrible it is to see someone you love affected by this terrible disease.
Love and respect, Paddy
Hi Paddy, I'm very sorry to read that your Mum is unwell with Lewy too. It truly is a horrible, horrible disease.
ReplyDeleteI hope all went well with the care appointments and that a suitable outcome was achieved. Sending you and your family lots of best wishes.
grt
ReplyDelete