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.
Thursday, June 25, 2009
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.
Thursday, May 28, 2009
Sleep deprivation
Dad had another bad night, waking at 2am from wetting the bed. I have started to put him in night nappies but he had wet through the nappy and was wet and so was the bed. I got him and the bed clothes changed and went back to sleep only to be woken again at 4 and 5 and 6. I feel quite ragged. This week, one morning I had what the dr thinks was a panic attack. I ended up passed out on the floor and had hit my forehead on the skirting board. The dr checked me out, blood pressure ok, eyes ok etc. It's after bad nights, the sleep deprivation makes me feel quite sick, it's more than just tired. On good days I'm beginning to feel better than I have in ages.
Dad's general health is good and he remains in good spirits but I'm noticing he is wanting to go to bed earlier, the disturbed nights must be having an affect.
This Sat my married daughter turns 25, the following week I turn 49 and 3 days later Dad turns 76. My married daughter has the flu, arrrgghhhh. When she told me my stomach turned over, she was a chronic asthmatic as a child/teenager. I think I asked her 'do you have the swine flu' 3 times. No, thank goodness. Hopefully we will all catch up for dinner next week.
The day after Dad's birthday he goes into respite for 2 weeks and I'm going to get away for a few days to recharge.
Dad's general health is good and he remains in good spirits but I'm noticing he is wanting to go to bed earlier, the disturbed nights must be having an affect.
This Sat my married daughter turns 25, the following week I turn 49 and 3 days later Dad turns 76. My married daughter has the flu, arrrgghhhh. When she told me my stomach turned over, she was a chronic asthmatic as a child/teenager. I think I asked her 'do you have the swine flu' 3 times. No, thank goodness. Hopefully we will all catch up for dinner next week.
The day after Dad's birthday he goes into respite for 2 weeks and I'm going to get away for a few days to recharge.
Friday, May 22, 2009
Gout
Oh and did I forget to mention GOUT, yep I have gout also.
The first 2 days of taking the tablets/vitamins I felt recharged and felt the best I had felt in years but today I ache like I have the flu and are tired. I need to talk further with my dr and want further tests about the gout.
The first 2 days of taking the tablets/vitamins I felt recharged and felt the best I had felt in years but today I ache like I have the flu and are tired. I need to talk further with my dr and want further tests about the gout.
Wednesday, May 20, 2009
I knew I felt tired.
I knew I felt tired but put it down to the situation, wakings through the nights and picking daughter up sometimes in the wee hours of the morning after she has finished working. Well, now I know there is another reason why I felt so tired. I went to see my dr to get my blood results and I have an under active thyroid. My dr told me to read about Hashimoto's disease and put me on Eutroxsig 100mcg (Thyroxine sodium) per day. This explains why I have found it difficult to shed 10 kilos and why I feel so tired plus some other symptoms like sore knees whilst I was painting the side fence to the point where it scared me because I could only kneel for 5 - 10 mins then I was in pain, bad pain. I look now at the nearly painted fence bar for the 3/4 along the bottom where I haven't finished and it makes sense. The dr also explained because Mum had Rheumatoid Arthritis and Dad has Pernicious Anemia that Hashimoto's was my auto-immune disease attached to (not sure whether he said the same gene) but it was typical of parents with these auto-immune diseases. I have to have another blood test in 3 months.
I also had high sugar levels after a fasting blood test. The dr phoned the pathologist whilst I was there to have further tests done on my blood, I have an appointment next Monday to find out these results. The dr discussed my sugar levels as being type 2 diabetes linking it to the extra weight I'm carrying. He wasn't specific in discussing this as he needs the blood results back.
I need to exercise more and hopefully the thyroid medication will now allow me to shed those 10 kilos. And there was more! I also have a mega Vitamin D deficiency and I'm now taking 75mcg (3 vit D tablets) per day for 3 months then see from blood tests whether to cut back the dose. This I can can understand as I don't get outside as much as I used to.
Fatigue is a symptom of the 3...I knew I felt tired.
And poor Dad was up at 3.30 am having breakfast, all the lights were on. I got up and asked him to go back to bed but he didn't want to go and I was too tired to argue. I got up at 8 and Dad had had 2 brekkys. At 11 am Dad was asleep at the table so he has gone back to bed for a nap.
Now I can see why I was finding it difficult to get Dad out and about. My patience level wasn't as it used to be and days out totally exhausted me. It all makes sense.
I'm still getting my head around things and need to work out a plan so I can begin to feel lively again.
I also had high sugar levels after a fasting blood test. The dr phoned the pathologist whilst I was there to have further tests done on my blood, I have an appointment next Monday to find out these results. The dr discussed my sugar levels as being type 2 diabetes linking it to the extra weight I'm carrying. He wasn't specific in discussing this as he needs the blood results back.
I need to exercise more and hopefully the thyroid medication will now allow me to shed those 10 kilos. And there was more! I also have a mega Vitamin D deficiency and I'm now taking 75mcg (3 vit D tablets) per day for 3 months then see from blood tests whether to cut back the dose. This I can can understand as I don't get outside as much as I used to.
Fatigue is a symptom of the 3...I knew I felt tired.
And poor Dad was up at 3.30 am having breakfast, all the lights were on. I got up and asked him to go back to bed but he didn't want to go and I was too tired to argue. I got up at 8 and Dad had had 2 brekkys. At 11 am Dad was asleep at the table so he has gone back to bed for a nap.
Now I can see why I was finding it difficult to get Dad out and about. My patience level wasn't as it used to be and days out totally exhausted me. It all makes sense.
I'm still getting my head around things and need to work out a plan so I can begin to feel lively again.
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