This article was published in 2008 in a Canadian "independent student newspaper called "The Brock Press." It's about a woman named Connie who is the primary caregiver for her father Bob, who has LBD.
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Dementia speaks, and families are there to listen
By Katherine Gottli
The Brock Press
Tuesday, October 7, 2008
Connie didn't think that she would have information to provide for this article, despite the fact that she is the one in her family most involved with the care-taking of her father, Bob.
Whether this can be attributed to modesty or simply nerves about her story being shared is uncertain. Regardless, sharing stories of living and coping with family members with Dementia may be the only support system that people have, as approximately 75 to 80 per cent of all personal care given to seniors in considered to be informal or familial.
Although Bob does not have Alzheimer's Disease specifically, he still falls under the broad category of Dementia. Bob has been affected by Lewy Body Dementia (LBD), a disease that is more associated with Parkinson's Disease.
According to the Alzheimer's Society, LBD accounts for 15 to 20 per cent of all Dementias. Characterized by "abnormal deposits of a protein called alpha-synuclien that form inside the brain's nerve cells", the areas of the brain involved in thinking and movement are the most affected by the disease.
While the symptoms of LBD are similar to those of Parkinson's and Alzheimer's - progressive loss of memory, language, and reasoning - one of the characteristic effects of LBD is the rapid progression of the Dementia, as well as visual hallucinations which, according to the Alzheimer's Society, "become worse in times of increased confusion", and "typically consist of people, children or animals".
For Connie, when Bob called her three years ago to inform her of the people in his home smoking marijuana and that he certainly did not want to be there, she knew that the concerns her family had had previous to that incident were materializing into something much more concerning.
After the death of Bob's wife - his whole existence for the latter years of her life, as Connie describes it - the whole family started to notice behaviours that were certainly not typical of their father.
"As soon as she died, my father went into quite a big depression. He stopped doing a lot of things; stopped socializing. He sat in his chair, all day long," Connie said. "He went out to my sister's [in Calgary] that year for Christmas and was disastrous. He just couldn't seem to function anymore - just knowing how to pack, how to get dressed in the morning. Everything was taking so much longer."
"Then we flew him out to Malaysia, and that was a very big setback for him. He arrived and he didn't know his way around, he didn't know his PIN numbers for his bank cards - watching construction out of the window he constantly thought there were people hanging off of roofs - it was a very stressful trip for him."
Though Bob is currently living in a nursing home, there was once a point when Connie was responsible for looking after her father, a responsibility that no child really wants to take on. For Connie, dealing with the whole process has been very stressful, even terrifying - seeing her father try to get his life back to a way he is comfortable with, and simply not being able to accomplish it is upsetting for her and her family. Before Bob was living in the home, Connie made attempts to make life as "normal" as possible for her father, but, because of the nature of LBD, it was very difficult to do so.
"I tried to get him involved with the Dunlop Centre because he still really likes to play cards and things like that. It got to the point where trying anything new, he couldn't do it, and that's a part of the Lewy Bodies. Anything new, he can't learn. So going out and joining something new, he would have no part of that what-so-ever," she said.
"He even started with the Meals on Wheels because his diet was [not good]. He would only eat three things, hot dogs, sausages and New Wave Cheesy Hamburgers. So we got him on the Meals on Wheels, and did different things like that."
Bob is also in a wheel chair, which has to do with the degenerative side of the LBD, according to Connie. His inability to walk started after an operation to remove a tumour, and from there the family knew that Bob could no longer live on his own.
"When he went into the hospital and came out of the anaesthetic, he was in full blown dementia. He had to be restrained in bed, then he couldn't walk - it took months to get him back on his feet. He went home and lasted about two months, but his inability to live on his own was very obvious. He couldn't function or take his meds or anything else," Connie said.
"He went though quite a few series of geriatric assessment teams that came into his house, he failed all of the tests. He can't comprehend what a stop sign means. He can see it, he can't redraw it. He can't draw a clock and put the hands at 10 to 2, or at 2 o'clock. What he sees and what his mind interprets are two very different things. That part was very evident."
Bob is doing well in his nursing home, according to Connie, even though she believes he has doubts about being there. The staff of the home is noticing fewer signs of his Dementia - which can be attributed to the medication he is currently on that slows the progression of it.
Connie can still notice signs of Dementia, however, but it's only because her father still confides in her. Bob still occasionally sees people coming into his room to steal his razors, but that's just his form of the Dementia, as Connie puts it.
"I still think he doesn't think that he needs to be where he is, that [being in a nursing home] is a real serious problem until I bring things up and he says 'yeah, you're right'. He is aware," she said.
But, being in the home is the safest and best place for Bob to be at this point in his life, and according to Connie he is funny and jovial, and the staff and other residents enjoy having him around. Beyond that, he is doing programs and getting involved, and the staff is great at getting him out of his room to join in the activities.
"He still doesn't feel that this is his home, and he's not crazy about being in there. But, he's thriving in there," Connie said. "To look at him in there now, you would think he could go home, but as soon as he goes home, he won't be taking his pills. He's in a very safe and controlled environment right no, and he's doing very well.