Dad is on his third shave, he is looking forward to going.
As much as we love each other, we certainly needed this break. Yesterday, Dad was determined he was going for a walk. He became slightly aggressive, saying he never goes anywhere. Oh dear! He also said something about missing out on going anywhere for Xmas. I got a glimpse of how difficult it will be not to correct him when things progress further.
I feel like he is attached at the hip. So this break will do both of us the world of good.
And Dad's bowels moved thoroughly overnight. It's certainly better than becoming impacted, but from one extreme to the other (and it took a couple of weeks)! So my Brother will have to play it by ear with the senna and prunes.
As for me I'm off in the morning on the ferry/ship to Tasmania. It's a 9 hour trip so I'll spend some time in the cinema/bars/restaurants and will begin one of my books I was given for Xmas.
...sensational.
I wont be posting till I get back so Happy New Year to all my family, and to all the people involved with a Lewy journey, David and Heather and Ian; I'm looking forward to the next installment about the folks in Okeroo.
Wednesday, December 31, 2008
Sunday, December 28, 2008
Helping Dad to Bed
For the past couple of weeks when helping Dad to bed I have noticed he places himself oddly, into an L shape. He can no longer roll, shuffle himself in the bed. Last night, he got into bed, was in an L shape so I asked him to get out of bed again. Sat him on the edge, and helped him down onto his side and swung his legs across. He was now on his side and laying straight. He said 'that's a lot more comfy' and he had a better sleep. What concerns me is that he can, some nights, get up to urinate, maybe 10 times. So on these nights he is getting back into bed into an L shape. I think all I can do is, if I hear him, help him position himself back into bed.
The positive side is that he is still mobile and that I am thankful for.
The positive side is that he is still mobile and that I am thankful for.
Saturday, December 27, 2008
Parkinson's Symptom Management
This taken directly from http://en.wikipedia.org/wiki/Parkinson. It's Dad's Parkinson's symptoms that are causing Dad problems at the moment so I went searching for some help..
There are other disorders that are called Parkinson-plus diseases. These include: multiple system atrophy (MSA), progressive supranuclear palsy (PSP) and corticobasal degeneration (CBD). Some include dementia with Lewy bodies (DLB) — while idiopathic Parkinson's disease patients also have Lewy bodies in their brain tissue, the distribution is denser and more widespread in DLB. Even so, the relationship between Parkinson disease, Parkinson disease with dementia (PDD), and dementia with Lewy bodies (DLB) might be most accurately conceptualized as a spectrum, with a discrete area of overlap between each of the three disorders. The natural history and role of Lewy bodies is little understood.
I felt I needed information to help Dad with his Parkinson's symptoms. I found this information at http://www.parkinsons.org.au/about-ps/treatments.htm Parkinson's Australia.
Symptom Management
1. Mobility
Rigidity and slowness of movement are the two most frustrating aspects. Common difficulties are:
Walking
-to help initiate walking gently rock the patient from side to side and then ask to step forward
-encourage to step over an object when freezing occurs
-counting while marching is helpful
-encourage arm-swinging to improve balance
Turning
-encourage to turn in a wide circle rather than pivoting on the spot
-Rising from a chair
-use a high chair with arm rests
-move to the front of the chair, place feet on the floor 8 10 inches apart, put hands on arms of chair, lean forward and push up. If unsuccessful rock forward and re-try
Turning in bed
-may need regular turning
-use Tri-Turn Sheets, bed poles, other aids
Tremor
writing, eating and dressing are difficult
-keep elbow pressed close to side
-use eating utensils from Occupational Therapist
-velcro tabs easier than zips and buttons
2. Eating and Drinking:
-assistance with eating may be necessary
-alter the diet if necessary
-frequent sips of cold water to prevent food sticking
-encourage coughing to prevent aspiration
-watch posture while eating
3. Constipation:
due to poverty of movement and slowing of bowel action also decreasing fluid intake and anticholinergics
4. Urinary Incontinence:
due to difficulty getting to the toilet, and inability to undress and prepare when there
monitor for constipation -- do not allow impaction to occur
-night time is more difficult due to turning and moving
-patients may be unable to initiate voiding -- frustration for nurse and patient
5. Communication
Parkinson's affects the control of muscle co-ordination and therefore a person's ability to communicate. The symptoms of tremor, stiffness and slowness can also impact upon the person's verbal and non-verbal methods of communicating with others.
Verbal Communication Speech:
Approximately 50% of people with Parkinson's experience difficulties with speech.
-the voice becomes softer due to a decreased ability to vocalise during exhalation
-slurring due to decreased tongue control
-difficulty initiating speech or unwanted hesitations due to akinesia
-uncontrollable repetitions of words
-speech may become monotonous and flat sounding, with no variation in the pitch and quality.
Management:
-referral to a speech pathologist
-increase use of non
-verbal communication, shorter sentences, more frequent pauses
-deep breathing and vocal exercises
-practice making sounds i.e. vowels
-don't let others talk for you
-use amplifiers etc if needed
Non-Verbal Communication
Facial Expression:
-due to reduced movement it becomes expressionless and "mask-like"
smiling, frowning, grinning and the ability to express anger, fear and joy require a conscious effort
-the listener may become confused and unable to respond appropriately
Management
facial exercises involving the brow, eyes, cheeks and lips to increase mobility
Limb Movement:
-may be restricted or "frozen" therefore limited non-verbal communication
-tremor of the hands most common
Management:
-general range of motion exercises to stretch the muscles of the limbs
-the tremor occurs at rest and decreases with purposeful movement therefore ensure the hand is doing something e.g. play with a coin, bead, or pen etc.
-arrest the tremor by immobilising the limb e.g. thumb tucked into belt, sit on hand, grab hold of structure, tuck elbow into side
Handwriting:
-due to difficulty with fine motor movements, the handwriting becomes smaller (micrographia)
-the shape of the letters remains the same but the size is smaller
-the smallness is exacerbated when writing a long paragraph compared to a short sentence, or when doing another task at the same time e.g. writing a message while on the phone changes may be noticed when signing cheques
-tremor can impede writing
Management:
-if writing becomes small STOP. Think about what you are writing and rehearse the movement in your mind
-write only small sections at a time
-use lined paper to act as a visual cue
-avoid doing other tasks while writing
-printing instead of writing may be easier
-use a non slip foam grip on the pen
-use other methods e.g. typewriter or computer
There are other disorders that are called Parkinson-plus diseases. These include: multiple system atrophy (MSA), progressive supranuclear palsy (PSP) and corticobasal degeneration (CBD). Some include dementia with Lewy bodies (DLB) — while idiopathic Parkinson's disease patients also have Lewy bodies in their brain tissue, the distribution is denser and more widespread in DLB. Even so, the relationship between Parkinson disease, Parkinson disease with dementia (PDD), and dementia with Lewy bodies (DLB) might be most accurately conceptualized as a spectrum, with a discrete area of overlap between each of the three disorders. The natural history and role of Lewy bodies is little understood.
I felt I needed information to help Dad with his Parkinson's symptoms. I found this information at http://www.parkinsons.org.au/about-ps/treatments.htm Parkinson's Australia.
Symptom Management
1. Mobility
Rigidity and slowness of movement are the two most frustrating aspects. Common difficulties are:
Walking
-to help initiate walking gently rock the patient from side to side and then ask to step forward
-encourage to step over an object when freezing occurs
-counting while marching is helpful
-encourage arm-swinging to improve balance
Turning
-encourage to turn in a wide circle rather than pivoting on the spot
-Rising from a chair
-use a high chair with arm rests
-move to the front of the chair, place feet on the floor 8 10 inches apart, put hands on arms of chair, lean forward and push up. If unsuccessful rock forward and re-try
Turning in bed
-may need regular turning
-use Tri-Turn Sheets, bed poles, other aids
Tremor
writing, eating and dressing are difficult
-keep elbow pressed close to side
-use eating utensils from Occupational Therapist
-velcro tabs easier than zips and buttons
2. Eating and Drinking:
-assistance with eating may be necessary
-alter the diet if necessary
-frequent sips of cold water to prevent food sticking
-encourage coughing to prevent aspiration
-watch posture while eating
3. Constipation:
due to poverty of movement and slowing of bowel action also decreasing fluid intake and anticholinergics
4. Urinary Incontinence:
due to difficulty getting to the toilet, and inability to undress and prepare when there
monitor for constipation -- do not allow impaction to occur
-night time is more difficult due to turning and moving
-patients may be unable to initiate voiding -- frustration for nurse and patient
5. Communication
Parkinson's affects the control of muscle co-ordination and therefore a person's ability to communicate. The symptoms of tremor, stiffness and slowness can also impact upon the person's verbal and non-verbal methods of communicating with others.
Verbal Communication Speech:
Approximately 50% of people with Parkinson's experience difficulties with speech.
-the voice becomes softer due to a decreased ability to vocalise during exhalation
-slurring due to decreased tongue control
-difficulty initiating speech or unwanted hesitations due to akinesia
-uncontrollable repetitions of words
-speech may become monotonous and flat sounding, with no variation in the pitch and quality.
Management:
-referral to a speech pathologist
-increase use of non
-verbal communication, shorter sentences, more frequent pauses
-deep breathing and vocal exercises
-practice making sounds i.e. vowels
-don't let others talk for you
-use amplifiers etc if needed
Non-Verbal Communication
Facial Expression:
-due to reduced movement it becomes expressionless and "mask-like"
smiling, frowning, grinning and the ability to express anger, fear and joy require a conscious effort
-the listener may become confused and unable to respond appropriately
Management
facial exercises involving the brow, eyes, cheeks and lips to increase mobility
Limb Movement:
-may be restricted or "frozen" therefore limited non-verbal communication
-tremor of the hands most common
Management:
-general range of motion exercises to stretch the muscles of the limbs
-the tremor occurs at rest and decreases with purposeful movement therefore ensure the hand is doing something e.g. play with a coin, bead, or pen etc.
-arrest the tremor by immobilising the limb e.g. thumb tucked into belt, sit on hand, grab hold of structure, tuck elbow into side
Handwriting:
-due to difficulty with fine motor movements, the handwriting becomes smaller (micrographia)
-the shape of the letters remains the same but the size is smaller
-the smallness is exacerbated when writing a long paragraph compared to a short sentence, or when doing another task at the same time e.g. writing a message while on the phone changes may be noticed when signing cheques
-tremor can impede writing
Management:
-if writing becomes small STOP. Think about what you are writing and rehearse the movement in your mind
-write only small sections at a time
-use lined paper to act as a visual cue
-avoid doing other tasks while writing
-printing instead of writing may be easier
-use a non slip foam grip on the pen
-use other methods e.g. typewriter or computer
Friday, December 26, 2008
Christmas Day 08'
We all had a wonderful day at my cousins for Christmas lunch and dinner. Lots of yummy food and the most amazing professional xmas cake made by cousin's hubby who is a pastry chef...some people have talent. Dad was given a chicken for Oxfam and I, women's support for Oxfam. And I got my favorite, books, from my girls. Thanks family for a lovely day.
Dad had a great day and was happy. His cognitive functions were quite good but his Parkinson symptoms were playing up. It's his bowels again. I have increased the senna tablets to the maximum dosage per day, 2 in the morning 2 at night plus after each meal I give him 10 pitted prunes. After reading more about Parkinson symptoms I have decided to not start the Genlac until I speak to the Geriatrician. The Genlac helps by bulking up which in turn helps the muscles to automatically work but if Dad's muscles aren't following commands and he bulks up and can't expel he will be in worse pain. So throughout Christmas Day Dad was having trouble working his bowels.
When we were leaving and getting into the car his muscles froze but I was able to talk him into position...put your bottom back...lift your leg into the car. On the way home I drove Dad to see some local amazing house all lit up with Xmas lights. When we were children it was a Xmas tradition to go see the decorated houses on the Boulevard.
At 3.00 am Dad was up, naked in the hallway. He had had an incontinence episode. I was soooo tired...strip bed, had wet through mattress protector, turn mattress over, change Dad, don't put any sheets on bed...help him back in to bed. Go back to my room...could hear him shouting out...I could only shout back...you are ok, go to sleep...peace reigned, wonderful.
I have noticed Dad becoming more and more rigid when I help him into bed. He is becoming board like. This evening, he at first knelt on the bed but couldn't swing down to a horizontal position. So I sat him on the edge and helped his torso down, his legs shot up and I swung his legs across onto the mattress. I could have swung him, pivoting on his hip, like the hand of a clock. Even though he was laying down on the mattress, he looked like he was perched and could have fallen.
It was most important that Dad had a great xmas...and he did.
Dad had a great day and was happy. His cognitive functions were quite good but his Parkinson symptoms were playing up. It's his bowels again. I have increased the senna tablets to the maximum dosage per day, 2 in the morning 2 at night plus after each meal I give him 10 pitted prunes. After reading more about Parkinson symptoms I have decided to not start the Genlac until I speak to the Geriatrician. The Genlac helps by bulking up which in turn helps the muscles to automatically work but if Dad's muscles aren't following commands and he bulks up and can't expel he will be in worse pain. So throughout Christmas Day Dad was having trouble working his bowels.
When we were leaving and getting into the car his muscles froze but I was able to talk him into position...put your bottom back...lift your leg into the car. On the way home I drove Dad to see some local amazing house all lit up with Xmas lights. When we were children it was a Xmas tradition to go see the decorated houses on the Boulevard.
At 3.00 am Dad was up, naked in the hallway. He had had an incontinence episode. I was soooo tired...strip bed, had wet through mattress protector, turn mattress over, change Dad, don't put any sheets on bed...help him back in to bed. Go back to my room...could hear him shouting out...I could only shout back...you are ok, go to sleep...peace reigned, wonderful.
I have noticed Dad becoming more and more rigid when I help him into bed. He is becoming board like. This evening, he at first knelt on the bed but couldn't swing down to a horizontal position. So I sat him on the edge and helped his torso down, his legs shot up and I swung his legs across onto the mattress. I could have swung him, pivoting on his hip, like the hand of a clock. Even though he was laying down on the mattress, he looked like he was perched and could have fallen.
It was most important that Dad had a great xmas...and he did.
Wednesday, December 24, 2008
The Parkinsonism's.
Yesterday Dad had a wonderful time at the day centre. There was lots of festivity, singing of carols, yummy treats to eat and lots of smiles from everyone. It was lovely to see.
But on a more sour note. The evening before Dad was having trouble again going to the toilet. Its when he needs to use his bowels that it happens. I was asking every few minutes, 'are you ok'.
Dad replied yes. After about 15 minutes I knew something was wrong and asked again. Dad said,'no I can't stand up, I told you so before' (he hadn't). I ask him why he can't stand up, ( I was kinda scared). Dad replies, 'I just can't'. I ask him has he wiped. 'No'. Through the next few minutes of conversation I work out that he had been trying to get 'IT' out manually. This also happened with this gentleman http://livingwithlewybodyebook.blogspot.com/ at 'digging for diamonds' entry. Oh dear! Have to give instructions to Dad to 'wipe and drop the paper'. Poor Dad drops the paper on the floor. I eventually get him off the loo and nail brushed finger nails etc. I help him up to his room and he says 'he is sorry and he wants to kill himself'. Dad still has quite good cognitive functions (most of the time). I take a big breath and tell him "you're 75, I guess you have to expect somethings not to be quite right'. He says, 'yes, I'm still lucky there are a lot of people worse off'. He never ceases to amaze me.
The next day I go to the chemist and have a chat with the pharmacist. He recommends Genlac which will bulk up and help the bowel muscles to automatically work. I will wait till after Christmas day to begin because we will be out at my cousins, just in case there's a problem.
Dad sees the Geriatrician in January. I will feel better once I can talk to him.
I wish everyone a Merry Christmas.
But on a more sour note. The evening before Dad was having trouble again going to the toilet. Its when he needs to use his bowels that it happens. I was asking every few minutes, 'are you ok'.
Dad replied yes. After about 15 minutes I knew something was wrong and asked again. Dad said,'no I can't stand up, I told you so before' (he hadn't). I ask him why he can't stand up, ( I was kinda scared). Dad replies, 'I just can't'. I ask him has he wiped. 'No'. Through the next few minutes of conversation I work out that he had been trying to get 'IT' out manually. This also happened with this gentleman http://livingwithlewybodyebook.blogspot.com/ at 'digging for diamonds' entry. Oh dear! Have to give instructions to Dad to 'wipe and drop the paper'. Poor Dad drops the paper on the floor. I eventually get him off the loo and nail brushed finger nails etc. I help him up to his room and he says 'he is sorry and he wants to kill himself'. Dad still has quite good cognitive functions (most of the time). I take a big breath and tell him "you're 75, I guess you have to expect somethings not to be quite right'. He says, 'yes, I'm still lucky there are a lot of people worse off'. He never ceases to amaze me.
The next day I go to the chemist and have a chat with the pharmacist. He recommends Genlac which will bulk up and help the bowel muscles to automatically work. I will wait till after Christmas day to begin because we will be out at my cousins, just in case there's a problem.
Dad sees the Geriatrician in January. I will feel better once I can talk to him.
I wish everyone a Merry Christmas.
Saturday, December 20, 2008
Anti-Parkinson's Medication
This is taken directly from http://www.virtualneurocentre.com/diseases.asp?did=73, virtualmedicalcentre.com, Lewy Body Dementia.
'Anti-Parkinson's medications (eg. levodopa/carbidopa, dopamine agonists): these are used to treat the motor symptoms (muscle stiffness and tremor) of Parkinson's disease, which are similar to the motor symptoms of Lewy body dementia. However, patients with DLB are often very sensitive to these medications, with little change to motor symptoms but worsening hallucinations and confusion. Because of this, anti-Parkinson's medications are used very carefully in DLB, and only in patients with severe motor symptoms.'
And taken directly from http://www.alzheimers.org.au/content.cfm?infopageid=912, Alzheimers Australia, dementia with Lewy Bodies.
Is there treatment available?
At present there is no cure for dementia with Lewy bodies. Symptoms such as depression and disturbing hallucinations can usually be reduced by medication. However, medications to relieve hallucinations may increase muscle tremors and stiffness. Conversely, anti-Parkinson drugs may make hallucinations worse. Emerging evidence suggests that cholinesterase inhibitor drugs may be quite helpful for some people with this condition.People with this form of dementia are very sensitive to the side effects of neuroleptic drugs such as antipsychotic medications. It is essential all medications are supervised by a specialist to avoid these severe side effects.
Lewy certainly is a beast all on its own.
'Anti-Parkinson's medications (eg. levodopa/carbidopa, dopamine agonists): these are used to treat the motor symptoms (muscle stiffness and tremor) of Parkinson's disease, which are similar to the motor symptoms of Lewy body dementia. However, patients with DLB are often very sensitive to these medications, with little change to motor symptoms but worsening hallucinations and confusion. Because of this, anti-Parkinson's medications are used very carefully in DLB, and only in patients with severe motor symptoms.'
And taken directly from http://www.alzheimers.org.au/content.cfm?infopageid=912, Alzheimers Australia, dementia with Lewy Bodies.
Is there treatment available?
At present there is no cure for dementia with Lewy bodies. Symptoms such as depression and disturbing hallucinations can usually be reduced by medication. However, medications to relieve hallucinations may increase muscle tremors and stiffness. Conversely, anti-Parkinson drugs may make hallucinations worse. Emerging evidence suggests that cholinesterase inhibitor drugs may be quite helpful for some people with this condition.People with this form of dementia are very sensitive to the side effects of neuroleptic drugs such as antipsychotic medications. It is essential all medications are supervised by a specialist to avoid these severe side effects.
Lewy certainly is a beast all on its own.
Dad's going to my Brothers.
Last night my sister-in-law rang and Dad is going to my brothers for 2 weeks. I can't say how much I am looking forward to this break. It's been 16 months since I have had a break. I need to point out that my sister-in-law has had a very tough year, losing her Mum in June. She also has had the worries of her grieving father to contend with. My nephews have lost 2 Nana's in 2 years.
On my break, my eldest daughter, her hubby and I may go away for a few days together then I hope to spend a week in Tassie, bush walking, canoeing etc. And Dad loves being with my brother and his family, apart form seeing them all, including his grandsons, Dad gets to assist my brother in his shed doing guy things. My brother, growing up, learnt a lot from those hours spent in the garage and I believe now has the nick name MacGyver. Dad misses doing those things.
On my break, my eldest daughter, her hubby and I may go away for a few days together then I hope to spend a week in Tassie, bush walking, canoeing etc. And Dad loves being with my brother and his family, apart form seeing them all, including his grandsons, Dad gets to assist my brother in his shed doing guy things. My brother, growing up, learnt a lot from those hours spent in the garage and I believe now has the nick name MacGyver. Dad misses doing those things.
As a child I used to enjoy spending time with him in the garage, not many girls of my generation could re-wire a fuse (old type of fuse) and it actually came in handy over the years, thanks Dad. So a big thanks to my brother and sister-in-law.
Friday, December 19, 2008
Dad's Parkinson symptoms flare up.
I thought twice about writing what happened last night. But as I thought over the events I realised it's only because of this blog that I was able to work out why, what happened, happened.
If Dad thought this may help someone else in my shoes he would be ok with writing about it.
I mentioned yesterday feeling like Dad was on a precipice...well last night I could see the beginnings of Lewy smothering out my Dad.
After dinner Dad's conversation went something like this...
Dad: I have to get 2 bits of metal that cut different shapes.
Me: Oh, ok why?
Dad:You put half one side, half the other and you get more. It's a bit hard to explain.
Me: Ok, then what happens.
Dad: You can turn 2 bottles of lemonade into 3.
I gave him 2 pens and he laid them out and showed me where another would go. I managed to curtail the urgency by saying he didn't need to make it tonight, that it could wait till tomorrow.
So then it was time for Dad to go to bed...He went to the toilet and came out saying he had a dirty bottom. I get his P.J's and turn shower on for him. He was taking his time, I hadn't heard the shower door close. Thought better check. He opens the door and he had pooed on the bathroom floor, (one good thing no sign of constipation) but oh dear, my poor Dad...try to remain calm and show him this doesn't bother me. Kitchen paper got rid of that (remember to write list, rubber gloves, antiseptic hand wash etc). Dad has shower and I help him to get into his P.J's. His Parkinson symptoms were playing up. He can't get dressed in the bathroom anymore. It's too dangerous, if he was too fall. Remember, from now on, dressing gown it to his room.
If Dad thought this may help someone else in my shoes he would be ok with writing about it.
I mentioned yesterday feeling like Dad was on a precipice...well last night I could see the beginnings of Lewy smothering out my Dad.
After dinner Dad's conversation went something like this...
Dad: I have to get 2 bits of metal that cut different shapes.
Me: Oh, ok why?
Dad:You put half one side, half the other and you get more. It's a bit hard to explain.
Me: Ok, then what happens.
Dad: You can turn 2 bottles of lemonade into 3.
I gave him 2 pens and he laid them out and showed me where another would go. I managed to curtail the urgency by saying he didn't need to make it tonight, that it could wait till tomorrow.
So then it was time for Dad to go to bed...He went to the toilet and came out saying he had a dirty bottom. I get his P.J's and turn shower on for him. He was taking his time, I hadn't heard the shower door close. Thought better check. He opens the door and he had pooed on the bathroom floor, (one good thing no sign of constipation) but oh dear, my poor Dad...try to remain calm and show him this doesn't bother me. Kitchen paper got rid of that (remember to write list, rubber gloves, antiseptic hand wash etc). Dad has shower and I help him to get into his P.J's. His Parkinson symptoms were playing up. He can't get dressed in the bathroom anymore. It's too dangerous, if he was too fall. Remember, from now on, dressing gown it to his room.
Later that evening I was trying to work out why it happened. Was it Dad's cognitive functions declining and he didn't know where he was. No, he was able to shower, get the towel and dry himself and then I remembered reading this blog where the gentleman with Lewy became frozen, perched above the toilet for about 15 minutes. Now it made sense to me. Dad couldn't navigate his way down onto the toilet. I now, know to watch out for him when he goes to the toilet. (there's a safety rail in the shower time to get them fitted to the toilet walls). And I only know this from the honest, detailed approach the carer's and author's took writing their journey with their Father/Father-in-law and Lewy and I thank them.
Thursday, December 18, 2008
Neuroleptic Sensitivity
This is taken directly from http://www.lbda.org/category/4132/treatment-options.htm , the Lewy Body Dementia Association. I may print this out, in case Dad ever has a stay overnight in hospital.
Neuroleptic Sensitivity
Severe sensitivity to neuroleptics is common in LBD. Neuroleptics, also known as antipsychotics, are medications used to treat hallucinations or other serious mental disorders. While traditional antipsychotic medications (e.g. haloperidol) are commonly prescribed for individuals with Alzheimer’s with disruptive behavior, these medications can affect the brain of an individual with LBD differently, sometimes causing severe side effects (see below). For this reason, traditional antipsychotic medications like haloperidol should be avoided. Some newer ‘atypical’ antipsychotic medications like risperidone may also be problematic for someone with LBD. Quetiapine is preferred by some LBD experts. If quetiapine is not tolerated or is not helpful, clozapine should be considered, but requires ongoing blood tests to assure a rare but serious blood condition does not develop. Hallucinations must be treated very conservatively, using the lowest doses possible under careful observation for side effects.
WARNING: Up to 50% of patients with LBD who are treated with any antipsychotic medication may experience severe neuroleptic sensitivity, such as worsening cognition, heavy sedation, increased or possibly irreversible parkinsonism, or symptoms resembling neuroleptic malignant syndrome (NMS), which can be fatal. (NMS causes severe fever, muscle rigidity and breakdown that can lead to kidney failure.)
Neuroleptic Sensitivity
Severe sensitivity to neuroleptics is common in LBD. Neuroleptics, also known as antipsychotics, are medications used to treat hallucinations or other serious mental disorders. While traditional antipsychotic medications (e.g. haloperidol) are commonly prescribed for individuals with Alzheimer’s with disruptive behavior, these medications can affect the brain of an individual with LBD differently, sometimes causing severe side effects (see below). For this reason, traditional antipsychotic medications like haloperidol should be avoided. Some newer ‘atypical’ antipsychotic medications like risperidone may also be problematic for someone with LBD. Quetiapine is preferred by some LBD experts. If quetiapine is not tolerated or is not helpful, clozapine should be considered, but requires ongoing blood tests to assure a rare but serious blood condition does not develop. Hallucinations must be treated very conservatively, using the lowest doses possible under careful observation for side effects.
WARNING: Up to 50% of patients with LBD who are treated with any antipsychotic medication may experience severe neuroleptic sensitivity, such as worsening cognition, heavy sedation, increased or possibly irreversible parkinsonism, or symptoms resembling neuroleptic malignant syndrome (NMS), which can be fatal. (NMS causes severe fever, muscle rigidity and breakdown that can lead to kidney failure.)
Fluctuations.
The fluctuations in Dad's motor skills and cognitive functions have lasted from a few minutes to a couple of weeks. Months ago he was having difficulty manoeuvring himself into his clothes, this lasted 2 weeks and then he was managing again.
Over the past month I have noticed Dad trying harder to anchor and position himself within the day. He asks after each meal, is there another meal to come.
I have also noticed a change when he feels lost. He would shout out 'It's John here', as if he knew there was someone in the house with him. But throughout the early hours of this morning he woke, and came down the hallway, shouting, 'Is anybody there'. He was frightened and thought there was no one else at home. My youngest daughter and myself, we were both at home and in our rooms, asleep. We got up, reassured him and Dad would go back to bed and to sleep. I feel like he is on a precipice. I only hope these changes are fluctuations and aren't permanent.
I think he, in some way, is aware of these changes because later he didn't want to get out of bed. He was depressed.
Dad never, ever and I mean never wants to stay in bed. Around 11 am I asked him if he wants to have brekky. He got up had brekky and a shower and just now is laughing at something on TV. He never ceases to amaze me. How he can bounce back.
Wednesday, December 17, 2008
Dad loves weekly day group
Yesterday, Dad had a great day...
On Tuesdays Dad goes to a day group. The staff are amazing. They make him feel so welcomed, relaxed and are so willing to listen to whatever Dad has to say. They're so patient.
They play games such as quoits, have party days, play with tambourines whilst dancing to music. They have a sing along with a pianist. Dad was in a choir as a boy and participates vigorously. I have often heard his voice, above the others, floating down the hallway, when I go to pick him up. In the garden there's a bird aviary, a bus stop, letter box and benches amongst the flowers.
I get a much needed 4 hours to myself.
Monday evening, both my daughters stayed over and we spent Tuesday together. It was great therapy for me filled with lots of much needed laughter.
On Tuesdays Dad goes to a day group. The staff are amazing. They make him feel so welcomed, relaxed and are so willing to listen to whatever Dad has to say. They're so patient.
They play games such as quoits, have party days, play with tambourines whilst dancing to music. They have a sing along with a pianist. Dad was in a choir as a boy and participates vigorously. I have often heard his voice, above the others, floating down the hallway, when I go to pick him up. In the garden there's a bird aviary, a bus stop, letter box and benches amongst the flowers.
I get a much needed 4 hours to myself.
Monday evening, both my daughters stayed over and we spent Tuesday together. It was great therapy for me filled with lots of much needed laughter.
Something that I learnt earlier this year which helped Dad to sleep through the night without getting up 3-5 times wanting breakfast, wanting to get in the shower and to get dressed. Dad would do this if he knew he had an appointment at the Drs, hospital or any outing. He would become so stressed, worrying about all the elements involved in being ready to go. Every night he would ask what was happening tomorrow. I learnt that if I said there was nothing planned he remained in bed and slept through till morning (most nights). At first it seemed a high price to pay, to never have anything to look forward to, but during some of those night time awakenings, Dad could get quite aggressive when I suggested he go back to bed. This approach has worked, stopping Dad from stressing and eating breakfast at 2.00 am. There are still the occassional night time awakenings, screamimg out and getting up, where he is afraid because he doesn't know where he is. Seeing that fear is definately the hardest thing for me to cope with. Luckily, so far I have been able to break Dad out of his fearful state and calm him down. So things, overall, remain relatively optimistic with Dad still having some terrific days.
Saturday, December 13, 2008
Dad's bowel movements...it has to be discussed.
Dad's constipation is getting worse...
Over the past 6-8 months Dad's bowel movements have changed.
I have gone from giving him a Sennetab (sennoside.B 7.5mg) 1 every 2 days to 1 every day to now, 2 every day. He also groans. When I first heard the sound I thought it sounded like a cow giving birth. I have read a blog where the person said it sounds like the noise a whale makes. It certainly is a different noise to the sounds an average person makes when constipated.
From reading http://livingwithlewybodyebook.blogspot.com/2008/04/what.html I realise this is the Parkinson part. His stomach muscles freezing. I have noticed over the past 2 months a few episodes of Dad freezing, to the spot, can't walk or talk. This happens more if he is trying to navigate his way into a chair. I think I need to keep a diary of Dad's bowel movements. To make sure he keeps regular and pain free and also if I need to discuss with Dr.
He also likes to tell me about his bowel movements. My Dad's private nature is changing. Sometimes at inappropriate moments. My Dad, Daughter and I were recently with a Real Estate Agent an Dad said how 'he thought the change in altitude had helped his bowel movements', huh! Later we all had dinner out and Dad said it was one of his best days he had had in ages.
Dad eats fruit, veges, beans/legumes and only whole grain bread. But next grocery shop I will be getting prune juice and stewed prunes. Hopefully this will help.
Over the past year I have noticed he eats a lot slower. Occasionally, he has taken 50 minutes to eat his dinner. He was having problems chewing red meat. So now we eat more chicken and fish (Dad loves fish) and occasionally pasta.
Dad is having a good day but gets confused as to what the time is. He is looking forward to spending Christmas day at my cousins. Dads sense of time is now child like, weeks appear to be months to him. But overall he is happy.
Friday, December 12, 2008
B12 injection.
It's 2.30 pm and so far Dad is having a good day. He has an appointment at family Drs for his B12 injection.
He has just had a shower. I get his clothes ready for him, get his towel, put then in bathroom and adjust the taps. The shampoo bottle is always purple and in the same spot. Everything is always in the same spot. This helps to reduce his confusion and stress levels. Dad is able to wash himself and dress himself. If I leave too much for him to organise, ie if I leave his clothes on his bed and he has to bring them down hallway and put them in bathroom. He ends up walking up and down the hallway, worrying, if he has forgotten something. He then worries where he will put the clothes, ie on the edge of the bath or on the towel rail. As his confusion gets worse he will then worry where to put his dirty clothes, it becomes too much for him to organise. So organising things for him keeps him from stressing.
He then gets the electric shaver from the nearby linen closet. It used to be kept in his room but I need it to be in my view because Dad pulled 3 shavers apart, breaking the internal wheels. Now I can see him get the shaver out and put it away.
For approximately the past 6 months Dad has had problems with phlegm. He has had chest x-rays and lungs are clear. But throughout the day and night he coughs and clears into a tissue. After reading livingwithlewybodyebook@blogspot.com I know that this will get worse. From what I have read I think this is part of the decrease in the ability to swallow.
Dad is watching TV now, my turn for a shower.
Dad used to doze off all the time.
During 2006 and 2007 Dad used to fall asleep a lot. He would just doze off. In the car (passenger) at home in front of the TV. When Mum was in hospital he could doze off at the most inappropriate times. For example when Mum was being resuscitated and intubated, when Dr's were discussing Mum's treatment. I think it was Lewy combined with stress. After Mum passed away Dad had quite a few episodes of narcolepsy. He would be drinking a cup of tea and just nod off, dropping the cup. Or eating and just fall asleep, head first onto the plate. During this time, he also when napping, would reach out his arm, plucking at the air or bend down trying to pick something up off the ground. This happened a lot during 2006 (Mum had bad rheumatoid arthritis) and late 2006-2007 (Mum was in hospital, COPD). Now Dad doesn't nod off much. He went from dozing perhaps up to 10 times a day to now having an afternoon nap every third day. And the plucking motions don't happen much now.
I have noticed over the past year, if I alleviate things which stress Dad out he has much better days and nights. I will over time discuss these things.
I have noticed over the past year, if I alleviate things which stress Dad out he has much better days and nights. I will over time discuss these things.
Thursday, December 11, 2008
Dad has chest pains
Two weeks ago...
We were having dinner at my cousins and Dad goes grey. I ask him is he feeling ok. No, he has chest pains. He was looking clammy and wanted his top removed.
Cousin phones ambulance. Paramedics hook up ECG, not having heart attack but some irregularity is showing up. Dad goes to hospital, spends night. Blood tests show no heart attack but ECG still showing irregularity. Explained as a non-specific irregularity. Dad comes home.
Dad is home 2 hours, chest pains start again, phone ambulance. Similar ECG reading. Dad goes back to hospital. Tests reveal no heart attack. Again irregularity is said to come from a non-specific cause. The chest pains are believed to be from reflux and medication (Somac/Pantoprazole 20mg, 1 per day) is prescribed. Dad comes home. I take Dad to see GP, he doubles the prescription dose (40mg Somac) and prescribes another tablet (Motilium/Domperidone, 10mg, half hr before food) to help with digestion. He further explains how spasms of the oesophagus can cause the pain. I come home and read about Gastroesophageal reflux disease (GERD) and the possible link to Obstructive Sleep Apnea.
The following day Dad complains of chest pains again. I have to make a judgement call. Dad is walking, pain isn't severe, Dad's color is ok. I tell Dad the pain will go by itself. This happens again the following day. Since then Dad has had no more chest pains, the tablets are working. Thank goodness.
That brings us up to date. I wonder what tomorrow will bring...hopefully Dad has a good day.
We were having dinner at my cousins and Dad goes grey. I ask him is he feeling ok. No, he has chest pains. He was looking clammy and wanted his top removed.
Cousin phones ambulance. Paramedics hook up ECG, not having heart attack but some irregularity is showing up. Dad goes to hospital, spends night. Blood tests show no heart attack but ECG still showing irregularity. Explained as a non-specific irregularity. Dad comes home.
Dad is home 2 hours, chest pains start again, phone ambulance. Similar ECG reading. Dad goes back to hospital. Tests reveal no heart attack. Again irregularity is said to come from a non-specific cause. The chest pains are believed to be from reflux and medication (Somac/Pantoprazole 20mg, 1 per day) is prescribed. Dad comes home. I take Dad to see GP, he doubles the prescription dose (40mg Somac) and prescribes another tablet (Motilium/Domperidone, 10mg, half hr before food) to help with digestion. He further explains how spasms of the oesophagus can cause the pain. I come home and read about Gastroesophageal reflux disease (GERD) and the possible link to Obstructive Sleep Apnea.
The following day Dad complains of chest pains again. I have to make a judgement call. Dad is walking, pain isn't severe, Dad's color is ok. I tell Dad the pain will go by itself. This happens again the following day. Since then Dad has had no more chest pains, the tablets are working. Thank goodness.
That brings us up to date. I wonder what tomorrow will bring...hopefully Dad has a good day.
Dad has sleep study.
Sill updating so I can then write about Dad's days and not his history...
Eventually Dad's name got to the top of the sleep study list.
Dad spent the night in hospital, hooked up, videoed and monitored etc. Conclusion, Dad has severe sleep apnea. His throat collapses 50 times an hour. At present we are waiting on list for hospital stay so Dad can be fitted and assessed with mask and air flow determined. If this does not work surgery may be required. This wait is frustrating, knowing that Dad's concentration could increase and possibly his cognitive functions.
Amazingly at the next Neuroscientist appointment, after her tests, she thinks Dad also has Alzheimers because the Lewy symptoms are progressing slowly. The diagnosis started off as Alzheimers, then it was Lewy, now it was Lewy and Alzheimers. Considering everything, the B12 episode and Dad's severe sleep apnea, I was so pleased to hear that the beast, Lewy, was progressing slowly.
Eventually Dad's name got to the top of the sleep study list.
Dad spent the night in hospital, hooked up, videoed and monitored etc. Conclusion, Dad has severe sleep apnea. His throat collapses 50 times an hour. At present we are waiting on list for hospital stay so Dad can be fitted and assessed with mask and air flow determined. If this does not work surgery may be required. This wait is frustrating, knowing that Dad's concentration could increase and possibly his cognitive functions.
Amazingly at the next Neuroscientist appointment, after her tests, she thinks Dad also has Alzheimers because the Lewy symptoms are progressing slowly. The diagnosis started off as Alzheimers, then it was Lewy, now it was Lewy and Alzheimers. Considering everything, the B12 episode and Dad's severe sleep apnea, I was so pleased to hear that the beast, Lewy, was progressing slowly.
Dad has a fit/seizure
Still updating the journey...
Dad had a fit and became unconscious.
I was cutting Dad's toe nails, sitting on the back stairs (outside). His right leg began to shake. At first I thought he was holding his leg in an awkward position so I could cut his nails. Both legs then shot out straight and he reclined to a 45 degree angle. At that stage of Lewy, occasionally Dad's body didn't seem to follow orders. So I was trying to help him to sit up. He then collapsed back on to the landing, his eyes rolled back and was going blue. I panic, begin CPR, thinking heart or does he need oxygen. Unsure, I race and phone for ambulance. Whilst on phone Dad becomes conscious. Writing about this disturbs me.
Paramedics arrive. Dad goes to hospital. Tests show he is ok.
Geriatrician orders more tests. Nuclear medicine test on heart. Heart is ok. Has EEG, not epilepsy. Has appointments with relevant specialists.
Neoroscientist evaluates results and thinks it was Lewy that caused the fit. She says more may occur.
Dad had a fit and became unconscious.
I was cutting Dad's toe nails, sitting on the back stairs (outside). His right leg began to shake. At first I thought he was holding his leg in an awkward position so I could cut his nails. Both legs then shot out straight and he reclined to a 45 degree angle. At that stage of Lewy, occasionally Dad's body didn't seem to follow orders. So I was trying to help him to sit up. He then collapsed back on to the landing, his eyes rolled back and was going blue. I panic, begin CPR, thinking heart or does he need oxygen. Unsure, I race and phone for ambulance. Whilst on phone Dad becomes conscious. Writing about this disturbs me.
Paramedics arrive. Dad goes to hospital. Tests show he is ok.
Geriatrician orders more tests. Nuclear medicine test on heart. Heart is ok. Has EEG, not epilepsy. Has appointments with relevant specialists.
Neoroscientist evaluates results and thinks it was Lewy that caused the fit. She says more may occur.
Dad has episodes of night-time incontinence
Continuing the journey...
Dad was extremely distressed by a couple of night-time episodes of incontinence. Geriatrician organises consultation with incontinence nurse. Dad's prostate had been checked and was ok.
The nurse discussed the importance of drinking water to combat this. I had been making sure Dad drank water (hydration/blood pressure) but now I needed to increase this and be diligent. She explained how as people aged the 'making urine mechanism within the body sometimes went haywire and the body produced more urine during the night'. Maintaining a certain level of water during the day would help keep the body making more urine during the day.
Other stimulants needed to be watched also.
So now:
1 coffee before lunch.
Occasionally 1 cup of tea in afternoon.
1 juice with lunch and breakfast.
2-3 large glasses of water through out day, one of these with dinner. Plus the glasses of water to take tablets.
Nothing to drink past 6 pm, but if thirsty a drink.
The outcome has been amazing. Dad, on average has only had 2-3 episodes per month.
The hardest part has been trying to convince Dad to drink the water on the following days after an episode. The incontinence nurse made a house follow up visit and again explained how important it was to maintain the water drinking. Luckily, Dad most days accepts the water.
Dad was extremely distressed by a couple of night-time episodes of incontinence. Geriatrician organises consultation with incontinence nurse. Dad's prostate had been checked and was ok.
The nurse discussed the importance of drinking water to combat this. I had been making sure Dad drank water (hydration/blood pressure) but now I needed to increase this and be diligent. She explained how as people aged the 'making urine mechanism within the body sometimes went haywire and the body produced more urine during the night'. Maintaining a certain level of water during the day would help keep the body making more urine during the day.
Other stimulants needed to be watched also.
So now:
1 coffee before lunch.
Occasionally 1 cup of tea in afternoon.
1 juice with lunch and breakfast.
2-3 large glasses of water through out day, one of these with dinner. Plus the glasses of water to take tablets.
Nothing to drink past 6 pm, but if thirsty a drink.
The outcome has been amazing. Dad, on average has only had 2-3 episodes per month.
The hardest part has been trying to convince Dad to drink the water on the following days after an episode. The incontinence nurse made a house follow up visit and again explained how important it was to maintain the water drinking. Luckily, Dad most days accepts the water.
2008
Dad has further tests. CT scan, another MRI.
A sleep study is requested by Geriatrician.
The neuroscientist prescribes Aricept.
Dad also takes Aropax for depression. It was whilst Mum was in hospital that I took Dad to Drs about depression. It was this visit that the Dr should have read back and seen about Dad's B12 but we also discussed Mum and how she was doing (out of intensive care). This was part of the B12 chain of errors.
Dad has follow up monthly consultations with Geriatrician.
I notice an improvement in Dad's concentration. Aricept appears to be beneficial.
6 months after starting Aricept, Geriatrician's nurse finds Dad's heart rate is dangerously slow. I had been trying to keep up Dad's physical health by going for a walk every couple of days. I told her of on our last walk Dad had become very tired and had wanted to return home, stopping along the way. We are sent immediately to have an ECG. Geriatrician recommends coming off aricept, if heart rate returns to normal, its the Aricept. If not, its possible a pace maker would be needed. Dad has further tests on heart. Heart after a couple of weeks is ok again. It was a side effect of the Aricept.
One of the tests also show Dad has had a mild stroke. Thank goodness this resulted in Dad having no clinical stroke damage.
A sleep study is requested by Geriatrician.
The neuroscientist prescribes Aricept.
Dad also takes Aropax for depression. It was whilst Mum was in hospital that I took Dad to Drs about depression. It was this visit that the Dr should have read back and seen about Dad's B12 but we also discussed Mum and how she was doing (out of intensive care). This was part of the B12 chain of errors.
Dad has follow up monthly consultations with Geriatrician.
I notice an improvement in Dad's concentration. Aricept appears to be beneficial.
6 months after starting Aricept, Geriatrician's nurse finds Dad's heart rate is dangerously slow. I had been trying to keep up Dad's physical health by going for a walk every couple of days. I told her of on our last walk Dad had become very tired and had wanted to return home, stopping along the way. We are sent immediately to have an ECG. Geriatrician recommends coming off aricept, if heart rate returns to normal, its the Aricept. If not, its possible a pace maker would be needed. Dad has further tests on heart. Heart after a couple of weeks is ok again. It was a side effect of the Aricept.
One of the tests also show Dad has had a mild stroke. Thank goodness this resulted in Dad having no clinical stroke damage.
2007
My beautiful, strong willed, vivacious and at times frustrating little Mum passed away in May 2007. Even with her odd ways, she was great company and I miss her terribly.
Dad spends 3 months at my other brother's place. This brother lives approx 900 miles away. I know that I'm coping now only because of this break. It did Dad the world of good too. It helped him with his grief. Plus at home my other brother was having major out bursts, violent ones.
My beautiful cat died 3 weeks after Mum.
Dad returns and I'm able then to focus on him, getting him to Dr's.
We have an appointment with the neuroscientist and she has in her notes the phone call to Mum. She had wondered why there was no follow up. It was an awkward situation for us all. My thinking at the time was still one of disbelief, how could Mum have lied. Dad has a MRI, blood tests etc.
(Dad had an MRI, blood tests etc done in 2005, part of neuroscientist's evaluation). He also sees a clinical psychologist. Still an Alzheimers diagnosis.
Another bombshell, she asks 'is Dad still having his B12 shots'? First I have heard of it. She says to get GP to begin them. I come home read about pernicious anemia and how a B12 deficiency can result in dementia. I take Dad to family GP he does further blood tests and says his levels are ok.
Dad has an appointment with a Geriatrician. This Dr was so thorough. It was she that diagnosed Lewy Body Dementia.
Dad had been acting out in his dreams for years, maybe 15 years. He would yell and punch. Once he landed out of bed under the dressing table. Mum sometimes made him sleep in the spare room. He could have really injured Mum. Mum was tiny and with her rheumatoid arthritis she needed all the rest she could get. I had chatted with Mum over the years saying he should have a sleep study done or at least see the local Dr about it. Mum controlled everything and everyone.
She also hated Drs with a passion, stemmed from her not being able to walk till she was 10.
Needless to say, Dad never saw a Dr about his sleep disorder. Concerning her own health it took me about 2 years to get her to a Dr's. The Dr actually said to me later, why did it take you so long to get her here. I had down loaded so much information for her, discussed with her the different forms of arthritis and that is was a matter of urgency to get a diagnosis. It could have been an infection in the joints and medication was needed. That the other types needed to be combatted with medication, too. Other relatives asked her to see a Dr, she still refused.
It needs to be mentioned that the neuroscientist was told of Dad's sleep disorder.
The Geriatrician asks:
Has Dad ever had concussion-yes (fell off a ladder, aged 69).
Has Dad ever had a fractured skull-yes (as a child from a swing).
Occupation- (electrician and many years as a TV technician-electro magnetic waves).
Depression-yes (hospitalised for 3 months in 1979) Mum never visited him and I later found out she threw out his medication).
Falls-yes (2, one whilst walking and one out of bed).
Sleep disorder-yes.
Lewy Body Dementia is the diagnosis.
She asks about B12 shots, (she has gathered all Dad's medical history). I told her GP did blood tests and said they were ok.
She orders more blood tests. No he also has pernicious anemia.
I take Dad back to GP, I am furious. He gets out Dad's history. He knew of deficiency from 2005 tests done by neuroscientist and Mum knew. Mum didn't tell me. After many tears in Dr's we resolve the chain of events, he admitted 'saying his clinic was part responsible for allowing Dad to slip through the cracks'. He also showed me the blood test results he had from his test. They showed that Dad's red blood cell count (if I remember correctly, the points involved) was just over and he explained that it was a progressive disorder. I had read so much info about pernicious anemia and that now literature showed that this reading/level could mask the underlying condition. (as I said this is from recall and if not correct it is something along those lines)
Dad begins his weekly B12 shots. He now has monthly shots.
The B12 episode was the hardest and saddest time of utter disbelief for me. I find it difficult to think of that time. I remember shutting down emotionally, numb, blank. This was too much to cope with.
Dad spends 3 months at my other brother's place. This brother lives approx 900 miles away. I know that I'm coping now only because of this break. It did Dad the world of good too. It helped him with his grief. Plus at home my other brother was having major out bursts, violent ones.
My beautiful cat died 3 weeks after Mum.
Dad returns and I'm able then to focus on him, getting him to Dr's.
We have an appointment with the neuroscientist and she has in her notes the phone call to Mum. She had wondered why there was no follow up. It was an awkward situation for us all. My thinking at the time was still one of disbelief, how could Mum have lied. Dad has a MRI, blood tests etc.
(Dad had an MRI, blood tests etc done in 2005, part of neuroscientist's evaluation). He also sees a clinical psychologist. Still an Alzheimers diagnosis.
Another bombshell, she asks 'is Dad still having his B12 shots'? First I have heard of it. She says to get GP to begin them. I come home read about pernicious anemia and how a B12 deficiency can result in dementia. I take Dad to family GP he does further blood tests and says his levels are ok.
Dad has an appointment with a Geriatrician. This Dr was so thorough. It was she that diagnosed Lewy Body Dementia.
Dad had been acting out in his dreams for years, maybe 15 years. He would yell and punch. Once he landed out of bed under the dressing table. Mum sometimes made him sleep in the spare room. He could have really injured Mum. Mum was tiny and with her rheumatoid arthritis she needed all the rest she could get. I had chatted with Mum over the years saying he should have a sleep study done or at least see the local Dr about it. Mum controlled everything and everyone.
She also hated Drs with a passion, stemmed from her not being able to walk till she was 10.
Needless to say, Dad never saw a Dr about his sleep disorder. Concerning her own health it took me about 2 years to get her to a Dr's. The Dr actually said to me later, why did it take you so long to get her here. I had down loaded so much information for her, discussed with her the different forms of arthritis and that is was a matter of urgency to get a diagnosis. It could have been an infection in the joints and medication was needed. That the other types needed to be combatted with medication, too. Other relatives asked her to see a Dr, she still refused.
It needs to be mentioned that the neuroscientist was told of Dad's sleep disorder.
The Geriatrician asks:
Has Dad ever had concussion-yes (fell off a ladder, aged 69).
Has Dad ever had a fractured skull-yes (as a child from a swing).
Occupation- (electrician and many years as a TV technician-electro magnetic waves).
Depression-yes (hospitalised for 3 months in 1979) Mum never visited him and I later found out she threw out his medication).
Falls-yes (2, one whilst walking and one out of bed).
Sleep disorder-yes.
Lewy Body Dementia is the diagnosis.
She asks about B12 shots, (she has gathered all Dad's medical history). I told her GP did blood tests and said they were ok.
She orders more blood tests. No he also has pernicious anemia.
I take Dad back to GP, I am furious. He gets out Dad's history. He knew of deficiency from 2005 tests done by neuroscientist and Mum knew. Mum didn't tell me. After many tears in Dr's we resolve the chain of events, he admitted 'saying his clinic was part responsible for allowing Dad to slip through the cracks'. He also showed me the blood test results he had from his test. They showed that Dad's red blood cell count (if I remember correctly, the points involved) was just over and he explained that it was a progressive disorder. I had read so much info about pernicious anemia and that now literature showed that this reading/level could mask the underlying condition. (as I said this is from recall and if not correct it is something along those lines)
Dad begins his weekly B12 shots. He now has monthly shots.
The B12 episode was the hardest and saddest time of utter disbelief for me. I find it difficult to think of that time. I remember shutting down emotionally, numb, blank. This was too much to cope with.
Mum's illness takes precedent over everything else.
I am trying to outline the journey so far. Then I can write about the present.
In 2005 I took Dad to see a Neuroscientist. After the consultation, the Neuroscientist phoned the house whilst Dad and I were out doing messages. When we arrived home Mum said she had received a phone call from the Neuroscientist. She told us there was nothing wrong with Dad. Mum lied. Why did Mum lie? Denial, shock; perhaps. Mum had a strange attitude concerning mental illnesses. She thought people could control their thoughts, behaviours...mind over matter. Perhaps she thought it best if Dad didn't know, that this in someway would help.
I found out by chance the following year about the Neuroscientist's diagnosis. It was when Mum was in hospital that I took my daughter to our local family Dr and he asked how Dad was doing. He said your Father's Alzheimers must be getting on. I was in shock, even though I knew he had some form of dementia, I knew Mum had lied because he said he had received the diagnosis from the Neuroscientist, the year before. Mum had just come out of intensive care, had a tracheotomy, muscle atrophy. Couldn't talk or move. Certainly wasn't the time to confront her. As Mum became stronger my cousin and I talked about Dad and his Alzheimers as a given. Later when she was strong and could talk and move, my cousin had a chat with her. Mum said she would never be able to cope with Dad's declining state. I never confronted her...it wouldn't have changed anything.
At this stage Dad was still functioning quite well. Considering the stress he was under and being extremely tired he could still follow the same path through the hospital to where Mum was. However, if Mum was moved he couldn't follow instructions of how to get there.
Looking back now I think I was on auto-pilot. Mum was very sick. Dad was slightly confused, not fully understanding Mum's illness. My daughter had a lump on her spine. My younger brother had had episodes of anger at the hospital and I was the brunt of his anger. Oh and the dog was sick, leave hospital got to vet, pick up dog, go back to hospital.
The lump, on my daughters spine turned out (thank goodness) to be a sebaceous cyst.
Upon reflection I don't know how I managed.
In 2005 I took Dad to see a Neuroscientist. After the consultation, the Neuroscientist phoned the house whilst Dad and I were out doing messages. When we arrived home Mum said she had received a phone call from the Neuroscientist. She told us there was nothing wrong with Dad. Mum lied. Why did Mum lie? Denial, shock; perhaps. Mum had a strange attitude concerning mental illnesses. She thought people could control their thoughts, behaviours...mind over matter. Perhaps she thought it best if Dad didn't know, that this in someway would help.
I found out by chance the following year about the Neuroscientist's diagnosis. It was when Mum was in hospital that I took my daughter to our local family Dr and he asked how Dad was doing. He said your Father's Alzheimers must be getting on. I was in shock, even though I knew he had some form of dementia, I knew Mum had lied because he said he had received the diagnosis from the Neuroscientist, the year before. Mum had just come out of intensive care, had a tracheotomy, muscle atrophy. Couldn't talk or move. Certainly wasn't the time to confront her. As Mum became stronger my cousin and I talked about Dad and his Alzheimers as a given. Later when she was strong and could talk and move, my cousin had a chat with her. Mum said she would never be able to cope with Dad's declining state. I never confronted her...it wouldn't have changed anything.
At this stage Dad was still functioning quite well. Considering the stress he was under and being extremely tired he could still follow the same path through the hospital to where Mum was. However, if Mum was moved he couldn't follow instructions of how to get there.
Looking back now I think I was on auto-pilot. Mum was very sick. Dad was slightly confused, not fully understanding Mum's illness. My daughter had a lump on her spine. My younger brother had had episodes of anger at the hospital and I was the brunt of his anger. Oh and the dog was sick, leave hospital got to vet, pick up dog, go back to hospital.
The lump, on my daughters spine turned out (thank goodness) to be a sebaceous cyst.
Upon reflection I don't know how I managed.
Dad's Lewy Diagnosis.
It was my eldest daughter who first noticed something wasn't quite right with her Pa. It would have been 2003. She noticed Dad's driving had changed. I put it down to him just getting older plus she is an extremely nervous passenger. It was 12 months later that the changes seemed significant to be of a concern. It was Dad's braking time. He was leaving it later than his normal to brake coming up behind stationary cars at traffic lights. At this stage it wasn't dangerous but bordering on reckless much the same as some young male drivers. No screeching tyres but there was a change. It was around this time that Dad also had trouble using an ATM. This infuriated Mum because it was only occasionally that it happened. To her, it seemed it only happened when she wanted to do something. At that stage Dad didn't have a diagnosis of Lewy Body Dementia. Mum wasn't aware of the fluctuations associated with Lewy. She often accused Dad of 'doing it on purpose just to get at her'. It was a sad time. Mum had really bad Rheumatoid Arthritis and Dad was caring for her.
In 2004 I returned to the family home. Taking Mum to Dr's, grocery shopping, gardening with her etc. Dad willingly gave up driving, saying he wasn't comfortable driving anymore. He did not want to hurt other users of the roads.
In 2004 I returned to the family home. Taking Mum to Dr's, grocery shopping, gardening with her etc. Dad willingly gave up driving, saying he wasn't comfortable driving anymore. He did not want to hurt other users of the roads.
Introducing Dad.
Dad is 75 and has Lewy Body Dementia and Alzheimers. I'm not going to reveal his identity because he has always been a very private, quiet man and I don't think he would like his life displayed.
Dad has 3 children. I'm the eldest and only daughter. I am Dad's sole carer.
Mum passed away last year, aged 67, from COPD. I was also Mum's carer for her last 2 years. Mum's illness included 2 months in intensive care, months in hospital and months in rehab. I took Dad to the hospital everyday. For a period of 6 weeks during the suctioning stage, I stayed overnight with Mum. My youngest daughter minded Dad and brought him to the hospital each day.
Also living with us is one of my brothers who suffers from mild Aspergers. It was a very difficult time for him whilst Mum was so sick and after Mum passed away for him as Mum had always cared for him. He experienced great degrees of anger which did not help Dad with his illness and grief. Things have settled down a lot and my brother is now coping well.
I have 2 adult daughters, one married and studying and my youngest is at Uni.
I have a wonderful cousin who was my rock throughout Mum's illness, through decision's of resuscitation and intubation (twice). I can never thank her enough.
That's us in a nutshell. An introduction to my world.
Dad has 3 children. I'm the eldest and only daughter. I am Dad's sole carer.
Mum passed away last year, aged 67, from COPD. I was also Mum's carer for her last 2 years. Mum's illness included 2 months in intensive care, months in hospital and months in rehab. I took Dad to the hospital everyday. For a period of 6 weeks during the suctioning stage, I stayed overnight with Mum. My youngest daughter minded Dad and brought him to the hospital each day.
Also living with us is one of my brothers who suffers from mild Aspergers. It was a very difficult time for him whilst Mum was so sick and after Mum passed away for him as Mum had always cared for him. He experienced great degrees of anger which did not help Dad with his illness and grief. Things have settled down a lot and my brother is now coping well.
I have 2 adult daughters, one married and studying and my youngest is at Uni.
I have a wonderful cousin who was my rock throughout Mum's illness, through decision's of resuscitation and intubation (twice). I can never thank her enough.
That's us in a nutshell. An introduction to my world.
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