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Joined: Wed Apr 04, 2007 1:48 pm
Posts: 6
Location: England
Post Advise
Hello
I am one of 5 main carers to our mum along with my brothers and sister. Mum was diagnosed with Lewy bodies Dementia in 2005. Since then her decline has been rather drastic though her altertness fluctuates greatly from day to day. I have read and researched much on this illness since mum's diagnosis and this has been helpful in dealing and coping with mum, and the distress the hallaucinations which where and at times still are, horrific and detailed.
What is the prognosis of this illness? What can we expect? How long do we have mum as she is? My questions may sound morbid and i do not wish to portray this impression to any of you, but the need to know what's next is so great.
Can anyone help.

Tanya


Fri Apr 06, 2007 3:43 am
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Post Re: Advise
Tanya wrote:
Hello
I am one of 5 main carers to our mum along with my brothers and sister. Mum was diagnosed with Lewy bodies Dementia in 2005. Since then her decline has been rather drastic though her altertness fluctuates greatly from day to day. I have read and researched much on this illness since mum's diagnosis and this has been helpful in dealing and coping with mum, and the distress the hallaucinations which where and at times still are, horrific and detailed.
What is the prognosis of this illness? What can we expect? How long do we have mum as she is? My questions may sound morbid and i do not wish to portray this impression to any of you, but the need to know what's next is so great.
Can anyone help.

Tanya


Good Morning Tanya,
Welcome to the LBD forums, I am glad you are self educating your self, it is so important, it allows you to help care for a Loved one with LBD.


You asked about what time frame is appropriate to plan for the
progressive levels. This is one of the first questions we all have
asked when faced with our loved one's diagnosis. Unfortunately there
is no one answer since every Lewy body dementia (LBD) patient is
unique. Although the areas of the brain affected are similar between
patients, the number of cells affected, which determines the
progression, varies greatly. This unknown makes it difficult, if not
impossible, to predict what lies ahead. The information available now
states the average duration is 5 to 7 years from diagnosis, depending
on several factors such as overall health, age, and severity of
symptoms. It is possible for the duration to be anywhere from 2 to 20
years. As caregivers, we have all learned that this disease has to be
taken day-by-day and we need to expect the unexpected. Planning is
sometimes replaced with enjoying whatever bits of quality time we can
share with our loved one. Many LBD patients eventually need a care
facility, either assisted living or a nursing home, and caregivers
have reported that by researching options and availability in advance,
it has provided an easier transition for both the family and their
loved one.


LBD is a disease which may present itself with a wide variety of
symptoms and accompanying disorders. As each symptom or disorder
surfaces, the caregiver and medical professional must address them one
at a time making sure the treatment of one symptom does not negatively
impact the patient, or cause another symptom to worsen. There is no
way to predict which symptoms will present or the degrees of
progression with any one LBD patient.




What actually takes their lives. If there are no
accompanying diseases such as cancer, heart disease, or diabetes, then
we are left with the question which is a good one. Remember, every
patient is different and it is possible that none of this will apply
to your Mum.Pneumonia, weight loss, falls, surgery, and
medications come to the top of the list. As the disease progresses
various physical problems may lead to a battles with pneumonia to a
point when the family decides (based on their previous discussions
with their loved one) not to treat it. A patient may have a dramatic
loss of weight that can be caused by depression or perhaps dysphagia
(problems with swallowing) due to the affects of LBD on the autonomic
system. Weight loss is common and can lead to life-threatening events.
A feeding tube is an option and should be discussed in advance to
eliminate the distress that the decision can cause loved ones. Not
eating is sometimes a way for patients to give up after several years
with LBD. Surgeries due to falls or other ailments can have a negative
effect due to the impact of anesthesia on many LBD patients. We often
hear about how the patient was fine then after surgery there was a
progressive decline leading to death. And last it can be medication,
the very thing used to try and manage symptoms of the disease can have
a negative impact.

Neuroleptic sensitivity, in which striking and irreversible
parkinsonism can evolve shortly after use of neuroleptics, has led to
the recommendation that conventional neuroleptics should be avoided in
patients with Lewy body dementia (LBD). For example, Haldol is known
to cause life-threatening effects in a LBD patient. Neuroleptics have
caused severe adverse reactions such as cognitive reduction,
parkinsonism, heavy sedation, and neuroleptic malignant syndrome.

Even the newer 'atypical' neuroleptics may or may not work in any given
patient although there are some reports that Seroquel, Zyprexia, and
Resperdal have been successful in treating problematic hallucinations,
delusions, or agitation in patients. However, unless it is
contraindicated, cholinesterase inhibitors such as Aricept, Exelon, or
Reminyl are recommended as the best choice for initial treatment of LBD.


Is LBD reversible and the answer is no, it is not. Both
Parkinson's disease and LBD are Lewy body diseases named for the
abnormal protein collections called Lewy bodies that accumulate in
brain cells.


Fri Apr 06, 2007 8:28 am

Joined: Wed Apr 04, 2007 1:48 pm
Posts: 6
Location: England
Post reply
Many thanks to all who posted a reply for my request for advise. I have found your comments helpful and will share them with my family.

This site is excellent as it enables one to voice concerns that one feels unable to share with family. Maybe because we are trying to be strong for one another we supress fears and concerns.

Again Thankyou for listening

Tanya


Fri Apr 06, 2007 12:39 pm
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Joined: Tue Mar 20, 2007 4:37 pm
Posts: 13
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hi tanya thought i would let you no feelings you our having and questions i have been there as mum so bad that i found myself praying to my dad to come get her he died in 2000 from parkinsons mum nursed him so when dx in feb so many enotions ran threw me as it was horrific to watch her rapid decline and equally amazing to see her now 6 wks later she has lost all the power to walk but her mind is so alert as a family at the start of her decline issues came up about gow to care for her and as you can imagin with 9 children and seven living around mum we all had differnt concerns we had a family meeting and everyone put there cards on the table about what could do and could not was avery emotional time as i felt mum needed 24 7 and we should give it to her but alas not practical for most and with nurology promblems myself had to look at bigger picture hence mum went into hospital very next day so as a family we do not have to make the decion of her going into a home thou we will decide which one thou at momment mum so lucid could not imagin her going in to one have ot working to try get back mobility as feel she could cope at home with her but hay my gratest saying this last 3mths one day at atime as mum will be in hospital for at least another 8 weeks hope i haven bored you but just trying to show you how emotional rollercoaster this diease is as im sure your expericning


Sat Apr 07, 2007 4:29 am
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Joined: Tue Mar 20, 2007 4:37 pm
Posts: 13
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hi tanya thought i would let you no feelings you our having and questions i have been there as mum so bad that i found myself praying to my dad to come get her he died in 2000 from parkinsons mum nursed him so when dx in feb so many enotions ran threw me as it was horrific to watch her rapid decline and equally amazing to see her now 6 wks later she has lost all the power to walk but her mind is so alert as a family at the start of her decline issues came up about gow to care for her and as you can imagin with 9 children and seven living around mum we all had differnt concerns we had a family meeting and everyone put there cards on the table about what could do and could not was avery emotional time as i felt mum needed 24 7 and we should give it to her but alas not practical for most and with nurology promblems myself had to look at bigger picture hence mum went into hospital very next day so as a family we do not have to make the decion of her going into a home thou we will decide which one thou at momment mum so lucid could not imagin her going in to one have ot working to try get back mobility as feel she could cope at home with her but hay my gratest saying this last 3mths one day at atime as mum will be in hospital for at least another 8 weeks hope i haven bored you but just trying to show you how emotional rollercoaster this diease is as im sure your expericning


Sat Apr 07, 2007 4:30 am
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Joined: Wed Apr 04, 2007 1:48 pm
Posts: 6
Location: England
Post advise
Hi Tricia

Your messege was very gratfully recieved, and not at all boring. It is strange how you mentioned that you called on your Dad for help to take your mum. I have done the exact same myself, having lost my Dad some 15 years ago to cancer. I hope your mum regains her mobility, especially as you say she is lucid and alert at the moment. This illness is so very very cruel. It breaks my heart to imagine how frustrating it must be for them...oh it does hurt so..
My mum lives alone, though we all live reletivley close by. As i have said previously we are 5 siblings and try to share the caring equally. Mum wants to stay at home and we are trying very hard to enable her to do so. As i am sure is the case with you and your siblings. We all have families of our own and all work full time. It can become extremely difficult maintaining the level of care mum needs.
I am rambling on now so i will close, otherwise i will bore you no doubt.
Thank you again and please keep in touch, share your feelings, it's comforting to know we are not alone.

Tanya


Sat Apr 07, 2007 9:38 am
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Joined: Tue Mar 20, 2007 4:37 pm
Posts: 13
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hi everyone just to let you no i visited mum today and talked really deeply about how things were and how thought she was suffering to much and praying to dad to come and about how totally no t her she responded by saying about how shr rembers nothing but about thou she has lost her mobility she wants back home i said to her about the hard work she was her reply was did i not walk the floors with you when you were a child i said mum i feel guilty enough but she did say how she does not rember all of it the not sleeping the mad dreams but she rembers some hullications thou she said it was like watching afilm and being so scared which she informed me she still is i then spoke to the head nurse who was amazed by her progress because the drugs which are working now was the same ones at home which she could not cope with he said how well she was doing and i told him the lady he sees now is mum and if her mind is so alert i want her home and i am moving to live near her and intend to enjoy this summer with her but i asked him to really try and not get her on her feet but at least able to help herself and us move her from one place to another as most of my family suffer osterprosis it is hard to move her about and by cod she hates that hoist anyway again i am rambling on so bye for now god bless everyone


Sat Apr 07, 2007 2:26 pm
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