While institutions have policies and procedures in place, those in management positions responsible to see that these are followed through, are quite often too busy being buried in bureaucratic paper work.
All required needs including dietary, hygiene, personal care; exercise and recreation etc., are laid out in policies in your home Province/State. Continuing Care and Accommodation Standards are available on line on the Alberta Health Services website.
While there are routines in place from toileting, to movement, hydration etc., there are times due to shortage of staff that these routines can be overlooked.
No matter how well an institution is run, there will always be oversights, and sadly this affects those who have no voice as they cannot speak for themselves and are left to suffer abandonment.
My husband has no voice. He is limited to how much he can express his needs. I am his voice. He may not be able to express himself but he knows full well what is being said and how he is being treated. I have had to personally demand respect and treatment with dignity for Steve and remind the staff by way of management through writing my concerns.
If you have concerns about your loved ones care, go to your Province/State website. Read the standards especially the Accommodation and Continuing care Standards. For example it will tell you how many baths they are required to get per week.
It is also good practice to not always show up at the same time every day or when you visit. This has been very helpful to me in terms of being more aware of the nature of care my husband is getting.
While Steve is limited in expressing himself and his needs, it is very obvious which Health Care Aids he takes a special liking to. The tone of voice, the gentle touch, the respect, goes a long way in helping our most vulnerable.
If you want to comfort the afflicted, sometimes you have to afflict the comfortable.
Sunday 31 May 2015
Sunday 17 May 2015
Dance Night
It's Dance Night every Friday at the Extendicare. The tables are moved to one side. The residents are arriving to form a circle, the majority in wheelchair's or walkers. The musicians are arriving. It can be anything from a band of eight or ten to a one man show.
The music begins to play all the old tunes. Feet began to tap and hands began to wave to the rhythm of the music. The volunteers get the wheelchairs out and it becomes quite a jovial site. Hands are going, big smiles are forming on their faces as they get swept across the floor.
My husband Steve was an accomplished musician. He could raise the standard of any vocalist with his piano playing. Lewy has stolen the majority of that special gift and has carried it off to some seclusive area of the brain. He has left enough for Steve's ear to pick up tunes but has robbed him completely of rhythm.
Tonight is a little special. Without any prompting, he takes my hand and starts to sway with the rhythm of the music. It's an amazing special moment and as quickly as it came it went away. Lewy does things like that. Until you become familiar with his meddling your hopes may be kindled to expect gradual improvements. You soon learn to enjoy that sentence that came with clarity, or a compliment such as; "I like your hair."
Tomorrow is another day with limited expectations.
The music begins to play all the old tunes. Feet began to tap and hands began to wave to the rhythm of the music. The volunteers get the wheelchairs out and it becomes quite a jovial site. Hands are going, big smiles are forming on their faces as they get swept across the floor.
My husband Steve was an accomplished musician. He could raise the standard of any vocalist with his piano playing. Lewy has stolen the majority of that special gift and has carried it off to some seclusive area of the brain. He has left enough for Steve's ear to pick up tunes but has robbed him completely of rhythm.
Tonight is a little special. Without any prompting, he takes my hand and starts to sway with the rhythm of the music. It's an amazing special moment and as quickly as it came it went away. Lewy does things like that. Until you become familiar with his meddling your hopes may be kindled to expect gradual improvements. You soon learn to enjoy that sentence that came with clarity, or a compliment such as; "I like your hair."
Tomorrow is another day with limited expectations.
Monday 11 May 2015
Lewy Body Dementia and Alzheimer's
While there are significant similarities to Alzheimer's dementia, LBD shows completely different symptoms. The symptoms vary from one patient to another; however there are certain core features that are very similar. I will emphasise those that are more related to what I see in my husband Steve.
LBD patients are more prone to visual hallucinations than in Alzheimer's patients. For Steve, hallucinations are rare, however he cannot communicate so it remains to be seen what is really going on inside. When he could communicate his hallucinations were more like an incident that took place but not just in the way he described it. For example; he was telling me one day that he was talking to the Mayor of the city of Calgary. After probing into the conversation I understood that he listened to the Mayor talk on TV.
LBD patients have sleep behavior disorder, talking in sleep, violent movements, falling out of bed. This was quite frequent when Steve was at home. We had moved to separate bedrooms due to my inability to sleep, which I needed having to go to work the next day. One morning I found him flat out on the floor, after which a bed rail was installed.
LBD patients have significant sensitivity to Antipsychotic medication. According to the LBD Association, 50% of patients with LBD who are treated with Antipsychotic medication may experience severe neuroleptic sensitivity leading to worsening symptoms. Steve could not tolerate the drugs that were available back then. There are some better treatments available at the present time.
Alzheimer's patients are not nearly as prone to developing extreme sensitivity to these drugs.
LBD patients have more of a fluctuating cognition than Alzheimer's. Steve has adverse fluctuations. He has never not known who I am, however there are some days when all I get is a blank stare. He knows the family when he sees their pictures but has trouble saying their names. The other day I was teasing him; 'Your my little poochy.' No, he says 'Your my poochy', so I say,' then your my pain in the butt.' He says, 'yes'. I say,' O no your not.' He says' theoretically I am.' And I'm thinking where did that come from? I may not get another word I understand other than ,yes, no, ok and good for sometime to come.
Steve has severe Parkinsonism. He is totally immobile, yet has significant strength in his hands.
" Never take for granted what your loved knows or understands regarding his/her surroundings. Treat them with dignity, respect and unconditional love."
LBD patients are more prone to visual hallucinations than in Alzheimer's patients. For Steve, hallucinations are rare, however he cannot communicate so it remains to be seen what is really going on inside. When he could communicate his hallucinations were more like an incident that took place but not just in the way he described it. For example; he was telling me one day that he was talking to the Mayor of the city of Calgary. After probing into the conversation I understood that he listened to the Mayor talk on TV.
LBD patients have sleep behavior disorder, talking in sleep, violent movements, falling out of bed. This was quite frequent when Steve was at home. We had moved to separate bedrooms due to my inability to sleep, which I needed having to go to work the next day. One morning I found him flat out on the floor, after which a bed rail was installed.
LBD patients have significant sensitivity to Antipsychotic medication. According to the LBD Association, 50% of patients with LBD who are treated with Antipsychotic medication may experience severe neuroleptic sensitivity leading to worsening symptoms. Steve could not tolerate the drugs that were available back then. There are some better treatments available at the present time.
Alzheimer's patients are not nearly as prone to developing extreme sensitivity to these drugs.
LBD patients have more of a fluctuating cognition than Alzheimer's. Steve has adverse fluctuations. He has never not known who I am, however there are some days when all I get is a blank stare. He knows the family when he sees their pictures but has trouble saying their names. The other day I was teasing him; 'Your my little poochy.' No, he says 'Your my poochy', so I say,' then your my pain in the butt.' He says, 'yes'. I say,' O no your not.' He says' theoretically I am.' And I'm thinking where did that come from? I may not get another word I understand other than ,yes, no, ok and good for sometime to come.
Steve has severe Parkinsonism. He is totally immobile, yet has significant strength in his hands.
" Never take for granted what your loved knows or understands regarding his/her surroundings. Treat them with dignity, respect and unconditional love."
Friday 1 May 2015
Who is Lewy?
The majority of dementia diseases are pretty much lumped together under the umbrella of Alzheimer's dementia. When Steve first began signs of deteriorating mental functions we were told it is white matter disease, mini strokes, oxygen not getting to the brain etc. It took six years for us to get any kind of diagnoses as to what was really happening. In the meantime I would get questions like; 'how is your husband, does he still know who you are?'
When the neurologists called and informed me that he had a dementia labeled Lewy Body Dementia, my first response was 'what is that'? At the time many health care professionals knew very little or nothing about the disease and gave me a blank stare.
My only resource and basically still is the internet. I am thankful to be able to share with other bloggers who are going through similar experiences.
LBD is a common cause of memory, motor emotional and behavioural disturbance and is the second leading cause of dementia. Because it has similar symptoms to Parkinson's and Alzheimer's, it is difficult to diagnose.
Lack of information can have devastating consequences on the patient, their family and even healthcare providers. The patient himself is misunderstood; the family is totally shattered, and giving the wrong kind of medication can be fatal.
Lewy Bodies are abnormal structures in the brain; microscopic protein deposits found in nerve cells in regions of the brain involved in thinking, memory and movement which causes the brain to slowly deteriorate. They were first discovered in 1912 by Frederick Lewy, a colleague of Alois Alzheimer,for whom Alzheimer's disease is named.
For more information on the subject go to www.lbda.org.
My next post will give some comparisons between Lewy Body Dementia and Alzheimer's disease.
I am not an expert on the disease and my future posts will be more to do with the every day living and coping with the disease.
When the neurologists called and informed me that he had a dementia labeled Lewy Body Dementia, my first response was 'what is that'? At the time many health care professionals knew very little or nothing about the disease and gave me a blank stare.
My only resource and basically still is the internet. I am thankful to be able to share with other bloggers who are going through similar experiences.
LBD is a common cause of memory, motor emotional and behavioural disturbance and is the second leading cause of dementia. Because it has similar symptoms to Parkinson's and Alzheimer's, it is difficult to diagnose.
Lack of information can have devastating consequences on the patient, their family and even healthcare providers. The patient himself is misunderstood; the family is totally shattered, and giving the wrong kind of medication can be fatal.
Lewy Bodies are abnormal structures in the brain; microscopic protein deposits found in nerve cells in regions of the brain involved in thinking, memory and movement which causes the brain to slowly deteriorate. They were first discovered in 1912 by Frederick Lewy, a colleague of Alois Alzheimer,for whom Alzheimer's disease is named.
For more information on the subject go to www.lbda.org.
My next post will give some comparisons between Lewy Body Dementia and Alzheimer's disease.
I am not an expert on the disease and my future posts will be more to do with the every day living and coping with the disease.
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