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.
Saturday, August 8, 2009
Friday, July 24, 2009
Daughter moves to her sisters.
I haven't blogged much recently because there's been a change to my household. Daughter who is studying law has moved in with her married sister and hubby in the city. So I have made a few trips moving her belongings. It's much better for her to be around young people, right in the centre of the city as she works part time in a city restaurant. Plus it's easier for her to get to uni, and for her to go out without having to rely on me for lifts to the station or bus stop. Plus she can sleep through the night without her Pa waking her up. BUT, I do miss her and so does my Dad.
So it's just me and Dad and my younger brother who had an episode yesterday, yelling and screaming. I had to phone my other brother interstate to get him to talk to him. He upsets Dad so much that it takes a couple of days for Dad to settle back down.
Dad's general health remains good. He has a great appetite, and his bowels are behaving. Every afternoon I cut up 3 pieces of fruit and we share it, always including a kiwi fruit, as this was recommended by an aged care worker.
Daughter passed all her law exams, receiving a distinction in one subject. This was a relief as I was concerned because of disrupted sleep as to how she would go.
Married daughter has been super busy doing photo shoots for magazines. She always has so many projects underway that I lose track of what she is doing.
My health is a bit like yo-yo at the moment. I tried gardening and was out of action for 3 days after. Muscles that felt like they were on the verge of cramping, like I had been pummeled from the inside and I lose full movement of my arms. This really pisses me off, when I can't lift my arms. I have further blood tests in August concerning my Hashimoto's and from what I have read it can take some time to get the medication levels right and they need to change as the disease changes.
Planning next, fine week day (it's quieter) to take Dad to the Zoo and another day we will go to the aquarium. Dad gets the most joy out of watching the antics of my 2 cats. There is definitely an unexplainable connection apart from love, care and concern for other animals that exists within us. As long as I have a map of where all the toilets are, we will be fine.
So it's just me and Dad and my younger brother who had an episode yesterday, yelling and screaming. I had to phone my other brother interstate to get him to talk to him. He upsets Dad so much that it takes a couple of days for Dad to settle back down.
Dad's general health remains good. He has a great appetite, and his bowels are behaving. Every afternoon I cut up 3 pieces of fruit and we share it, always including a kiwi fruit, as this was recommended by an aged care worker.
Daughter passed all her law exams, receiving a distinction in one subject. This was a relief as I was concerned because of disrupted sleep as to how she would go.
Married daughter has been super busy doing photo shoots for magazines. She always has so many projects underway that I lose track of what she is doing.
My health is a bit like yo-yo at the moment. I tried gardening and was out of action for 3 days after. Muscles that felt like they were on the verge of cramping, like I had been pummeled from the inside and I lose full movement of my arms. This really pisses me off, when I can't lift my arms. I have further blood tests in August concerning my Hashimoto's and from what I have read it can take some time to get the medication levels right and they need to change as the disease changes.
Planning next, fine week day (it's quieter) to take Dad to the Zoo and another day we will go to the aquarium. Dad gets the most joy out of watching the antics of my 2 cats. There is definitely an unexplainable connection apart from love, care and concern for other animals that exists within us. As long as I have a map of where all the toilets are, we will be fine.
Thursday, July 23, 2009
Dad is doing ok
Nothing much has changed here. Dad remains in good spirits but continues to wake me throughout the night, all lights on in the house, having brekky at 3am, talking to me through my bedroom door. This can happen up to 15 times a night. At times I feel so drained with aching muscles.
I don't want to begin giving Dad the Quetiapine (seroquel) 12.5mg because he is still so good throughout the day. Will leave it for awhile.
I don't want to begin giving Dad the Quetiapine (seroquel) 12.5mg because he is still so good throughout the day. Will leave it for awhile.
Thursday, June 25, 2009
OK! I'm having a whinge.
Another bad night! Dad awoke so many times. Around 2am Dad was naked in the hallway, he had wet the bed. The heater was on but it's winter here, he was freezing so I put him in some PJ's and changed the bed. He continued to get up and turn all the lights on. He also let the cat out, who hates being outside, especially when its 2 degrees Celsius outside so around 4am the cat was banging on the wire door and I opened the door to find the cat at head height claws in the wire, shrieking. Around 6am the screaming started again. Dad was screaming out my name...I was so tired...all I could do was go up to his room and tell him he was waking up the street...I go back to bed...in zombie mode. I get up to find Dad coming in the back door. He had been to the neighbours to ask them if they could lengthen his belt. He had broken the end off one of his belts.
Later my neighbour comes to the door, I open it, the wire falls off the door and my neighbour had bought Dad a new belt. So kind of him, no need to explain to him Dad has other belts, just hold the wire up and thank him as graciously as I could. By the time I had fixed the wire Dad had lost the belt but had found his other one.
After nights like this I feel shattered and jittery like my nerves are shattered and kind of like I have really bad hay fever. Lets hope tonight is better.
On a brighter note daughter thinks she did ok in her exam and was over the moon to have completed her exams for this semester. She has gone to the country for a friends birthday and starts back at work Friday night.
Later my neighbour comes to the door, I open it, the wire falls off the door and my neighbour had bought Dad a new belt. So kind of him, no need to explain to him Dad has other belts, just hold the wire up and thank him as graciously as I could. By the time I had fixed the wire Dad had lost the belt but had found his other one.
After nights like this I feel shattered and jittery like my nerves are shattered and kind of like I have really bad hay fever. Lets hope tonight is better.
On a brighter note daughter thinks she did ok in her exam and was over the moon to have completed her exams for this semester. She has gone to the country for a friends birthday and starts back at work Friday night.
Wednesday, June 24, 2009
Dad is home from respite
Dad came home from respite on Monday. He had enjoyed his stay. Whilst there he had gone on an outing to the beach for a barbecue and had attended a nearby day facility on a couple of days. On one of my visits a therapist said he was going to bring in Dad an old style radio to fix/tinker with and when I picked up dad I noticed in his room a magazine from the 70's all about electronics. Plus the art/music therapist wanted to see Dad's drawings he did when he was a young boy to give her an idea of what style of drawing he liked to do and hopefully she could engage him in doing some. The staff try very hard to get to know the person.
The first night home Dad didn't have a very good night. He got up quite a few times, tried having conversations with me from the hallway, wanted his brekky and in the wee hours was screaming out from his room and when I say screaming he was SHOUTING. The following day he kept asking me to take him to the hospital because he needed to go to the toilet. He wasn't in pain but he thought he was going to the toilet too much. He wasn't going too much and 'a urinary tract infection' did cross my mind but he wasn't in pain. It was like he was surprised and worried that he had used his bowels, saying see, look at this, I told you so, when he wiped his bottom. He didn't believe me when I said he would be alright and told me if it was one of my daughters I would take them straight away to the hospital and that he would never forgive me. He wipes his bottom and leaves the paper in a little pile on the floor. I have to tell him to pick it up and put it in the toilet. It was a long day.
The following night, last night, he slept through the night till about 6am. Thank goodness because my daughter had her final law exam for this semester today (she is in her exam as I write and I can't wait to speak to her to see how she thinks she has gone). Today Dad is going to the toilet without any problems and is in much better spirits and hopefully tomorrow will be a good day too.
The first night home Dad didn't have a very good night. He got up quite a few times, tried having conversations with me from the hallway, wanted his brekky and in the wee hours was screaming out from his room and when I say screaming he was SHOUTING. The following day he kept asking me to take him to the hospital because he needed to go to the toilet. He wasn't in pain but he thought he was going to the toilet too much. He wasn't going too much and 'a urinary tract infection' did cross my mind but he wasn't in pain. It was like he was surprised and worried that he had used his bowels, saying see, look at this, I told you so, when he wiped his bottom. He didn't believe me when I said he would be alright and told me if it was one of my daughters I would take them straight away to the hospital and that he would never forgive me. He wipes his bottom and leaves the paper in a little pile on the floor. I have to tell him to pick it up and put it in the toilet. It was a long day.
The following night, last night, he slept through the night till about 6am. Thank goodness because my daughter had her final law exam for this semester today (she is in her exam as I write and I can't wait to speak to her to see how she thinks she has gone). Today Dad is going to the toilet without any problems and is in much better spirits and hopefully tomorrow will be a good day too.
Friday, June 12, 2009
Medication problems in respite facility
When I dropped Dad off at the respite facility the manager told me she wanted to give Dad a 'sleeper' to help him stay asleep throughout the night. The hairs on my neck stood up because it was because of something else that I went into her office to discuss and she off handily said she was going to get their visiting GP to prescribe him something. NO, I began, because Dad has Lewy Body Dementia do you think this is wise? 'It will be fine' she replied. 'It wont make his hallucinations worse'? I asked. 'Not any more than he already is' she said. My hairs stand up on my neck and I visualised jumping the desk and ripping her head off...I'm still standing in the same spot. I realise she doesn't know about Lewy and it's medication problems. I begin 'you can't give Dad any form of antipsychotic' I say with my stress levels peaking.
'Valium, will be ok, we will just give him a little' she says. 'No, I'm not sure about that' I reply. 'What about Temazepam?' she asks. I reply 'No, I'm not sure of the classes of tablets which are harmful'. She says 'It will be ok, it may make him a little sleepier throughout the day'. I visualise F18's coming in...I reply 'All I do know is that antipsychotics can be dangerous, it's more than a little increase in hallucinations. People with Lewy have ended up in psych wards'. She looks at me like I'm the one who has lost their marbles. So I used the most extreme outcome I knew of, but I had read on the net where this did happen. Her mouth is half open...I continue 'You also have to be careful with anti-Parkinson's medication because it can make them worse'. She replies 'I don't see how that could happen'. Ok I'm banging my head against a brick wall...'Studies have shown this to be true. Some of the dangers with medication is increase in stiffness, rigidity and sometimes death'...trying to remain calm...'Do you want me to phone Dad's Geriatrician and get him to contact you? I think she may have caught on when I said 'Death'. Yes that would be good and could you email me the studies you are talking about because I'm UNAWARE of this. Ok now I'm freaking out. How did they pull the wool over my eyes when I asked if they were familiar with Lewy. I will have to be more careful in future, having people with Lewy Body Dementia stay at their facility DOES NOT EQUAL knowing, familiar, yes, but not the specific knowledge that's required.
I leave, I phone Dad's Geriatrician and speak to his more than helpful, absolutely lovely, on the ball, Clinical Consultant Nurse. I explain the situation and mention VALIUM. She says 'NO DON"T GIVE HIM THAT IT COULD SET HIM BACK A YEAR'. My stomach turns over. I hate LEWY, this isn't an easy situation to deal with. She takes facilities phone number and she asks me to email her contact details. She tells me she will speak to the Geriatrician tomorrow (it's now late afternoon) and get him to contact them with details about medication and that she will contact me when this has been done. It was this woman who picked up the side effects Dad was experiencing with Aricept...dangerously low heart rate...followed by lots of tests to determine if it was Aricept or Dad's heart. It was the Aricept.
Back to the problems at hand. I email woman at respite facility information from Lewy Body Dementia Association and Alzheimer's Australia.
The following day I receive email from woman from respite facility. She wrote that she had gone home and looked up the same sites that I sent her and that she had read the problems and was now aware of them.
I also received an email from the more than capable nurse which was a copy sent to respite facility.
I have copied this here breaking some rules but I think this knowledge needs to get out there as much as possible.
'It is best to avoid any drug treatment for wandering. Benzodiazepines are contraindicated and may worsen the problem. Suggestions: Quetiapine (seroquel) 12.5mg nocte, is the least dangerous but I would only use it if symptoms can be managed no other way.
Risperidone 0.5mg may be used if Quetiapine is not available.'
I don't want another evening like that. Daughter was having last minute law exam kittens, I was trying to get the information together to help Dad and I came down with a cold/flu. Stayed up too late helping daughter with legislation, had 4 hrs sleep and drove her to exam (why I drove her, it's miles away in an unfamiliar area and she was stressing enough without having to deal with finding the place by catching a bus and 2 trains). I felt kinda ordinary but boy was it worth it to see her come out after finishing the exam, GLOWING...wouldn't have missed it for the world.
I will be phoning the respite facility this afternoon to find out how things are going and I think then I may take along bath with a lovely cuppa tea with lemon.
'Valium, will be ok, we will just give him a little' she says. 'No, I'm not sure about that' I reply. 'What about Temazepam?' she asks. I reply 'No, I'm not sure of the classes of tablets which are harmful'. She says 'It will be ok, it may make him a little sleepier throughout the day'. I visualise F18's coming in...I reply 'All I do know is that antipsychotics can be dangerous, it's more than a little increase in hallucinations. People with Lewy have ended up in psych wards'. She looks at me like I'm the one who has lost their marbles. So I used the most extreme outcome I knew of, but I had read on the net where this did happen. Her mouth is half open...I continue 'You also have to be careful with anti-Parkinson's medication because it can make them worse'. She replies 'I don't see how that could happen'. Ok I'm banging my head against a brick wall...'Studies have shown this to be true. Some of the dangers with medication is increase in stiffness, rigidity and sometimes death'...trying to remain calm...'Do you want me to phone Dad's Geriatrician and get him to contact you? I think she may have caught on when I said 'Death'. Yes that would be good and could you email me the studies you are talking about because I'm UNAWARE of this. Ok now I'm freaking out. How did they pull the wool over my eyes when I asked if they were familiar with Lewy. I will have to be more careful in future, having people with Lewy Body Dementia stay at their facility DOES NOT EQUAL knowing, familiar, yes, but not the specific knowledge that's required.
I leave, I phone Dad's Geriatrician and speak to his more than helpful, absolutely lovely, on the ball, Clinical Consultant Nurse. I explain the situation and mention VALIUM. She says 'NO DON"T GIVE HIM THAT IT COULD SET HIM BACK A YEAR'. My stomach turns over. I hate LEWY, this isn't an easy situation to deal with. She takes facilities phone number and she asks me to email her contact details. She tells me she will speak to the Geriatrician tomorrow (it's now late afternoon) and get him to contact them with details about medication and that she will contact me when this has been done. It was this woman who picked up the side effects Dad was experiencing with Aricept...dangerously low heart rate...followed by lots of tests to determine if it was Aricept or Dad's heart. It was the Aricept.
Back to the problems at hand. I email woman at respite facility information from Lewy Body Dementia Association and Alzheimer's Australia.
The following day I receive email from woman from respite facility. She wrote that she had gone home and looked up the same sites that I sent her and that she had read the problems and was now aware of them.
I also received an email from the more than capable nurse which was a copy sent to respite facility.
I have copied this here breaking some rules but I think this knowledge needs to get out there as much as possible.
'It is best to avoid any drug treatment for wandering. Benzodiazepines are contraindicated and may worsen the problem. Suggestions: Quetiapine (seroquel) 12.5mg nocte, is the least dangerous but I would only use it if symptoms can be managed no other way.
Risperidone 0.5mg may be used if Quetiapine is not available.'
I don't want another evening like that. Daughter was having last minute law exam kittens, I was trying to get the information together to help Dad and I came down with a cold/flu. Stayed up too late helping daughter with legislation, had 4 hrs sleep and drove her to exam (why I drove her, it's miles away in an unfamiliar area and she was stressing enough without having to deal with finding the place by catching a bus and 2 trains). I felt kinda ordinary but boy was it worth it to see her come out after finishing the exam, GLOWING...wouldn't have missed it for the world.
I will be phoning the respite facility this afternoon to find out how things are going and I think then I may take along bath with a lovely cuppa tea with lemon.
Tuesday, June 9, 2009
Dad's Birthday
It's Dad's 76th birthday today. He has gone to his day care facility for the day. On the way I bought a choccy mud cake for him and his friends to celebrate his birthday. This morning I gave him his presents, some winter clothing and some new pj's but Dad was more interested in getting to 'the old boy's place' as he calls it. The days of buying Dad fishing rods and art supplies have gone.
Last night Dad awoke nearly every hour thinking it was morning and at one stage he thought I was playing tricks on him by telling him it was night time. It was quite disturbing when he looked at me and said 'but you are my daughter' like I was purposefully trying to confuse him.
Considering the bad night Dad was in good spirits and myself, I awoke for the first time in ages not feeling groggy. I'm guessing the thyroid, diabetes medication and the Vit D is kicking in.
Winter is setting in with the temperature, today, around 11 degrees Celsius and we have rain. Lets hope we have some decent rainfall over winter to help break the drought and to get our dams levels up.
This afternoon Dad has to have his B12 shot, not a great thing to have done on your birthday but tomorrow Dad is having 12 days in respite. My daughter has a cold and has her first law exam on Thursday with 3 more following over the next 2-3 weeks. Having a peaceful house will allow her to study and get some much needed sleep.
Last night Dad awoke nearly every hour thinking it was morning and at one stage he thought I was playing tricks on him by telling him it was night time. It was quite disturbing when he looked at me and said 'but you are my daughter' like I was purposefully trying to confuse him.
Considering the bad night Dad was in good spirits and myself, I awoke for the first time in ages not feeling groggy. I'm guessing the thyroid, diabetes medication and the Vit D is kicking in.
Winter is setting in with the temperature, today, around 11 degrees Celsius and we have rain. Lets hope we have some decent rainfall over winter to help break the drought and to get our dams levels up.
This afternoon Dad has to have his B12 shot, not a great thing to have done on your birthday but tomorrow Dad is having 12 days in respite. My daughter has a cold and has her first law exam on Thursday with 3 more following over the next 2-3 weeks. Having a peaceful house will allow her to study and get some much needed sleep.
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