Yesterday Dad had a fall. He stood up from his lounge chair and just collapsed onto the floor. He wasn't hurt. Luckily he didn't hit his head or limbs on furniture. I have read that low blood pressure can be a symptom of LBD so will get Dad checked out by his GP to make sure that is what it is. Dad sees the dr on Wednesday for his B12 shot.
Dad is wanting to go to bed earlier. Some nights he wants to go at 6.30 pm but I try to get him to stay up till at least 7.30 to hopefully help him sleep a little later.
Last night he awoke at 8.30 and came down and told me
'who is going to get the long pieces?'
'Dad I'm not sure. I think you might be dreaming'. Dad uses the word dreaming when he starts talking 'out of the moment'...ie 'need to catch the rabbit' looks at me and laughs and says I must be dreaming. So it seemed appropriate to use because Dad 'wasn't there' and I didn't want to agitate him.
He was quite ardent that he had something to build and it was troubling him. To me he seemed like he was still in a dream state.
After a few minutes he came around and then was happy to go back to bed.
Around 10 pm he was singing out something not making a lot of sense. So I went up to his room and he was troubled, slightly confused but frightened. I tried to work out what was bothering him. Wasn't too hot, too cold, no pain, didn't need to go to the loo but he wouldn't or couldn't tell me what it was that was scaring him, he didn't want to be in bed or in that room. He also said that it would be better if he ended it all because he was a danger to people. My Dad the pacifist, who fed the possums in the yard to the dismay of a neighbour after Peter the possum took up residence in their roof, who let the pool go all murky over winter so there would be more frogs in this world (every summer it was a family ordeal to clean the pool for Mum), who I have only seen raise his voice twice in my whole life now think he is a danger to people. You just gotta hate Lewy!!!
Dad was just laying there. At the moment my 2 cats, especially Scruffy is more of a danger (I'm aware that this may change one day). I wish I knew how to turn off these terrible thoughts, dreams, or maybe they are hallucinations.
I told him it was ok to get up and asked him did he want to watch TV. He sat for awhile watching the football and after half an hour he wanted to go back to bed.
I feel like Dad is on a cusp, like standing on the edge of an abyss, the verge of a further decline.
Sunday, September 13, 2009
Friday, September 11, 2009
Sleep is a problem for Dad
Yesterday afternoon I took Dad for a drive up to the Yarra Valley, to Healesville. It's where he and Mum spent their honeymoon. He thoroughly enjoyed the drive through the picturesque country side. But finding a loo...drove through the town, the park's loo was far too far for Dad to walk. So pulled into a petrol station. I get the key and get Dad to the loo in time but had to keep opening the door and direct him.
In the early hours of this morning Dad was singing out, repeating over and over a sentence of jibber jabber ending with bow wow. Over and over, inhale ....la la la bow wow...exhale and repeated for a few hours. Then came the screaming. Went up to his room. He told me he was tied down. He had his pj's and nappy around his ankles. Changed him and put a towel on the bed and I went back to bed. Dad remained asleep till 10 and I managed to catch up on some sleep.
I have noticed since the nights have become worse that Dad is dozing on and off more through the day. No wonder. He must absolutely exhaust himself not being able to get some decent sleep.
In the early hours of this morning Dad was singing out, repeating over and over a sentence of jibber jabber ending with bow wow. Over and over, inhale ....la la la bow wow...exhale and repeated for a few hours. Then came the screaming. Went up to his room. He told me he was tied down. He had his pj's and nappy around his ankles. Changed him and put a towel on the bed and I went back to bed. Dad remained asleep till 10 and I managed to catch up on some sleep.
I have noticed since the nights have become worse that Dad is dozing on and off more through the day. No wonder. He must absolutely exhaust himself not being able to get some decent sleep.
Thursday, September 10, 2009
A sad night.
It's 5.50 am and have been up since 4.30. Dad has just gone back to bed but I can't sleep, thank goodness for computers. The last few days I have felt better, the dr told me I would have good days and bad days and what a difference it makes to how I am able to manage Dad. When I was feeling awful, so lethargic, my thoughts were 'I can't do this anymore'. Now that I feel ok, I feel like 'yep I can do this'. I wish I felt like it all the time, like I used to...single Mum of 2 young girls who worked full time and did a law degree full time...sphew and I managed it all really well...c'est la vie. And I really wish that I had stayed well till after Dad's Lewy journey.
Last night Dad was screaming out for help and I mean SCREAMING...'I need to pull my eyes out'...'take the paper away'...usually I go straight up to his room but this time I went to the loo first because the other morning helped Dad to the loo and he was on there for ages...'you finished yet'...'no'...eventually...I was busting but just made it. So I went to the loo and go up to his room find him kneeling on the bed, naked waist down...mooning me. Bed clothes on the floor, wee on the carpet, wee in the bed, goobies on the sheets and Dad kinda stuck in the kneeling position. I'm so pleased we are no longer in the depths of winter. THIS IS MY DAD...my heart breaks.
Over the past couple of weeks I was getting used to going up to his room and finding that he had slipped off his pj's and nappy and wee'd a few times in the bed but this kinda threw me.
I could tell he was sort of scared and not aware of what was happening around him. I didn't want to frighten him so I asked him,
'Dad what do you want to do?' ...no answer. He wasn't there. MY DAD WASN'T THERE. I waited a few seconds.
'Dad what do you want to do?'...no answer. I rubbed his back. 'Dad what do you want to do?'
'Leave here'.
'ok we can do that'. I wasn't sure how I was going to get him moving. Rubbed his hands. His body was kinda of stuck in the kneeling position. Got him edging his way back towards the edge of the bed but he couldn't manoeuvre his way off the edge. I had to roll him on to his side and then I couldn't get him sitting up. Wasn't his weight it was his body not doing what he wanted. Eventually he grabbed hold of the bed head and he pulled himself up to a sitting position. Ok now what? Mum and Dad always had a cuppa, a cup of tea when things were haywire. If you had news to tell them, Mum would say I'll put the kettle on. If you were feeling under the weather, Mum would say I'll make you a nice strong cup of tea. Ok, so I tell Dad I'll help him to the loo and make him a cup of tea. Dad manages to walk and go to the loo. I help him sit at the table and he has his cuppa. During this he is telling me he doesn't want to go back to bed. Dad sounds like a scared child, his voice wavering.
'if you don't want to go back to bed that's fine, drink your cuppa and we'll watch tv'.
Half an hour later he tells me he wants to go back to bed.
'are you sure?' I asked, worried because I was still reeling because of his fear.
'yep'. All his fear gone. Help him back to bed and since all I have heard is a few mumbles and him snoring.
Lewy has begun to cripple his spirit.
A couple of days ago Dad said to me he doesn't think he'll make Christmas. We'll get there Dad, Lewy hasn't got us yet.
Last night Dad was screaming out for help and I mean SCREAMING...'I need to pull my eyes out'...'take the paper away'...usually I go straight up to his room but this time I went to the loo first because the other morning helped Dad to the loo and he was on there for ages...'you finished yet'...'no'...eventually...I was busting but just made it. So I went to the loo and go up to his room find him kneeling on the bed, naked waist down...mooning me. Bed clothes on the floor, wee on the carpet, wee in the bed, goobies on the sheets and Dad kinda stuck in the kneeling position. I'm so pleased we are no longer in the depths of winter. THIS IS MY DAD...my heart breaks.
Over the past couple of weeks I was getting used to going up to his room and finding that he had slipped off his pj's and nappy and wee'd a few times in the bed but this kinda threw me.
I could tell he was sort of scared and not aware of what was happening around him. I didn't want to frighten him so I asked him,
'Dad what do you want to do?' ...no answer. He wasn't there. MY DAD WASN'T THERE. I waited a few seconds.
'Dad what do you want to do?'...no answer. I rubbed his back. 'Dad what do you want to do?'
'Leave here'.
'ok we can do that'. I wasn't sure how I was going to get him moving. Rubbed his hands. His body was kinda of stuck in the kneeling position. Got him edging his way back towards the edge of the bed but he couldn't manoeuvre his way off the edge. I had to roll him on to his side and then I couldn't get him sitting up. Wasn't his weight it was his body not doing what he wanted. Eventually he grabbed hold of the bed head and he pulled himself up to a sitting position. Ok now what? Mum and Dad always had a cuppa, a cup of tea when things were haywire. If you had news to tell them, Mum would say I'll put the kettle on. If you were feeling under the weather, Mum would say I'll make you a nice strong cup of tea. Ok, so I tell Dad I'll help him to the loo and make him a cup of tea. Dad manages to walk and go to the loo. I help him sit at the table and he has his cuppa. During this he is telling me he doesn't want to go back to bed. Dad sounds like a scared child, his voice wavering.
'if you don't want to go back to bed that's fine, drink your cuppa and we'll watch tv'.
Half an hour later he tells me he wants to go back to bed.
'are you sure?' I asked, worried because I was still reeling because of his fear.
'yep'. All his fear gone. Help him back to bed and since all I have heard is a few mumbles and him snoring.
Lewy has begun to cripple his spirit.
A couple of days ago Dad said to me he doesn't think he'll make Christmas. We'll get there Dad, Lewy hasn't got us yet.
Saturday, September 5, 2009
Daughter's Birthday.
Thursday my youngest daughter turned 23. Dad and I picked up both my daughters and first stop was having a look at my eldest daughters fashion photo exhibition which is part of fashion week. It was up 2 flights of stairs so youngest daughter stayed in the car with Dad. The exhibition was sensational, she is soooo talented. Then it was off to lunch. We had lunch at a restaurant overlooking the beach and the food was very yummy. I ordered Dad prawns which he thoroughly enjoyed but I wish they hadn't arrived with the tails still on as it threw Dad as to which part he could eat. Then it was back to daughter's place for cake and candles. It was a lovely day. Birthday daughter had a big night out with lots of friends, so all in all, she had a great birthday.
Dad continues to decline, with good days becoming fewer. The times he has trouble maneuvering himself down on to the toilet has increased. He also gets confused as to how to turn the tap on and off, at least he screams out for me so I can turn the tap off.
He is nowhere his usual cheery self. Some days he cries and says he wants to jump off a cliff. It's really awful to see. One morning he was so bad I rang my brother interstate to have a chat with him. My brother was able to bring him around, thank goodness.
Some nights Dad sleeps through to around 6 which is good for him and good for me. The other nights, well, they can be bad.
Dad just had a visit for Father's Day, which is tomorrow, from our cousins. They recently bought new cars and Dad was pleased to get to have a ride in one of them.
I put Dad on the list for a place a few months ago at the facility where Dad has stayed and phoned them last week about a permanent place. There is nothing until next year, so booked respite up till April. Have phoned other places and the shortest list is about 6 months so will be going to go have a look at that place. Will also contact my case coordinator to see what she can find.
The past couple of months I have had to reassess my plans for after something happens to Dad. I had wanted to get a few acres and have some chooks, ducks, vege garden etc but unless my health improves I don't think I would be able to maintain it. So apart from worrying about Dad I have had to get my head around my own issues. So, for the moment we're plodding along, taking things a day at a time.
Dad continues to decline, with good days becoming fewer. The times he has trouble maneuvering himself down on to the toilet has increased. He also gets confused as to how to turn the tap on and off, at least he screams out for me so I can turn the tap off.
He is nowhere his usual cheery self. Some days he cries and says he wants to jump off a cliff. It's really awful to see. One morning he was so bad I rang my brother interstate to have a chat with him. My brother was able to bring him around, thank goodness.
Some nights Dad sleeps through to around 6 which is good for him and good for me. The other nights, well, they can be bad.
Dad just had a visit for Father's Day, which is tomorrow, from our cousins. They recently bought new cars and Dad was pleased to get to have a ride in one of them.
I put Dad on the list for a place a few months ago at the facility where Dad has stayed and phoned them last week about a permanent place. There is nothing until next year, so booked respite up till April. Have phoned other places and the shortest list is about 6 months so will be going to go have a look at that place. Will also contact my case coordinator to see what she can find.
The past couple of months I have had to reassess my plans for after something happens to Dad. I had wanted to get a few acres and have some chooks, ducks, vege garden etc but unless my health improves I don't think I would be able to maintain it. So apart from worrying about Dad I have had to get my head around my own issues. So, for the moment we're plodding along, taking things a day at a time.
Sunday, August 16, 2009
The nights are long.
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.
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.
Monday, August 10, 2009
Dr recommends permanent care.
I just returned from the doctors and he recommends that Dad be placed in permanent care sooner than later. I was hoping to get till Christmas but he is concerned about my health, my Hashimotos. It's the inflammation throughout my body and the pain it causes plus the damage to organs. He discussed cortisone injections and told me he suggests to patients to try to plod along until really necessary because of side effects. He also explained from my recent blood results that caring for Dad is 24/7 and that it's not possible to maintain round the clock care when I must feel part-time well...soooooo...what to do? Dad has a respite stay coming up in late September, at the moment I think I will plan that as a marker to get to, then home a month and then it will be time, that's if all falls into place with the care facility.
Not a good day.
Not a good day.
Saturday, August 8, 2009
Son-in-law gets new job
This is the best news I have had in ages, it's so exciting. My son-in-law worked in a call centre whilst he was at uni and for the past year since finishing his degree and NOW he has got a job he really, really wanted. He studied interior design in the form of interior architecture. If you think of shopping centre's interiors (malls), lobbies, bars how to utilise the space, natural light, safety, correct eco friendly materials all with a cutting edge design, well that's him. He does the computer building of the image using a program like cad. So needless to say he and daughter are over the moon. He starts on Monday, wahoo!
We haven't been able to get to the Zoo. We've had very windy days with rain which is good for our drought and dam levels but alas we've been housebound. Hopefully this week we will make it, boy do we need to get out, he's bored and I'm bored!!!
I've noticed Dad is becoming quite stooped, bent shoulders and a lean to one side. Some days his walking is so slow and others he can be quite speedy. When I shower him and ask him to turn around, 9 out of 10 times he turns the wrong way...'no Dad the other way'.
And just now he has been to the toilet and he tells me what he has done and I asked him if he wiped...no. It's the functions, toileting, showering and dressing that are noticeably declining. Most of the time he remains mentally within the moment, sometimes has trouble with my name.
Oh the other evening daughter visited and he couldn't work out which granddaughter it was and asked about 5 times, which one was here and who was in the city with their husband. He ended up in tears of laughter with my daughter as they went through...'no Pa, it's me...no Pa (Dad tells everyone how this granddaughter is on her second degree) it's me with the degree...He eventually felt comfortable within himself as to which granddaughter she was.
Hoping lots more good days are on their way.
We haven't been able to get to the Zoo. We've had very windy days with rain which is good for our drought and dam levels but alas we've been housebound. Hopefully this week we will make it, boy do we need to get out, he's bored and I'm bored!!!
I've noticed Dad is becoming quite stooped, bent shoulders and a lean to one side. Some days his walking is so slow and others he can be quite speedy. When I shower him and ask him to turn around, 9 out of 10 times he turns the wrong way...'no Dad the other way'.
And just now he has been to the toilet and he tells me what he has done and I asked him if he wiped...no. It's the functions, toileting, showering and dressing that are noticeably declining. Most of the time he remains mentally within the moment, sometimes has trouble with my name.
Oh the other evening daughter visited and he couldn't work out which granddaughter it was and asked about 5 times, which one was here and who was in the city with their husband. He ended up in tears of laughter with my daughter as they went through...'no Pa, it's me...no Pa (Dad tells everyone how this granddaughter is on her second degree) it's me with the degree...He eventually felt comfortable within himself as to which granddaughter she was.
Hoping lots more good days are on their way.
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