Caring for Mama F
A page in the diary ""
Written by MamaFMIL 29. Sep 2007 12:19 AM
My MIL was diagnosed with Lewy Body Dementia in February 2006, which was the first time I ever heard of this disease. To me dementia was dementia...or Alzheimers! I'd never been in contact with anyone with such a young onset (she's 72 now) and I presumed, naively, that this was for very old people. My own grand mother, who I was very close to, succumbed to dementia but at the ripe old age of 92 and she only lived a few months after that. An Aunt of my mothers was caring for her husband with Alzheimers but we rarely saw her and Cliff was in his very late 70's.
My husband and I had been through a rough patch just as the diagnosis was given and as I'd never been particularly close to MIL had not seen the slow decline. My husband had been spending time with her every Thursday evening, taking her shopping and playing cards til quite late at night and he did tell me she wasn't quite right, but me being the 'old me' decided that she was play acting to get attention...I'd never heard of "show time". She'd always been a bit of a moaner and always had something to complain about..I used to listen but not really hear her if you know what I mean? It can be quite tiresome when people are always complaining.
Whenever she called on the phone and spoke to me our conversation was ALWAYS about bowel movements, or should I say the lack of. She couldn't go, or hadn't been enough...very graffic details I can tell you. At the time I had no clue that this is a classic symptom of the illness, the obsession with poo! Then came the confusion of taking medication out of the doset box. We tried all sorts (there are 4 other siblings). Writing on the box in Itallian, my SIL used to call her when it was time to take the meds, etc etc until we exhausted all options and decided the only way was for a member of the family to be there at night to administer medication and prepare the morning doses. This soon turned into us spending an evening every week with her to keep her company and assist her to bed. All family members work full time, and as there are alot of us this worked for a while. Until it became evident that certain people were giving their all and others (although they said they were comitted to helping) were only giving what was required. This was when the rota was devised. Split 5 ways its not too bad and as we said its not set in stone we can swap and change as necessary to accommodate everyone. One evening per week night each and rotate the weekends, one week Sunday, one week Saturday (whole days over the weekend for stimulation and to avoid depression) then 3 weekends off. I think this is a dream situation as I only have 1 brother and know that should this happen to our parents (god forbid) that we would struggle with such a commitment. But of course with most large families comes politics and I found myself right in the mix! Even though for 10 years I'd managed to keep out of it all. They're a very competive bunch of folks and always trying to prove they're more worthy than the other (impossible for me to comprehend, I love my brother unconditionally, as our parents do us. But hey there are only two of us maybe it would be different if there were more). I abstained for years, while our children were young I couldn't stand the fact that I had to "show them off" it was like show and tell in the classroom...which kid can do the best at whatever it was the parents enjoyed at the time. My babies were not growing up clawing for affection from these "blood" relatives who should just love them for who they are!
Well it must seem strange to them that I'm able to care for Mama after all the years I had nothing much to do with the family, but things have changed and I'm not that self centred person they used to think I was anymore. (I'm not really self centred nor ever have been but because I spoke my mind...well another long laborious story)....
Her decline has been hearbreaking and how could I not put all the history behind me. I had to help this poor lady to keep hold of the little dignity she had left. Her whole world had turned upside down and the wrong way round. The hallucinations, delusions and terrors she's suffered over the last couple of years are horrendous to say the least. I could write a book on that part of her progression alone...if I could remember them all...and still there's no end to what will come up next.
I scoured the internet in my quest to educate myself and my husband regarding this illness and have found some fantastic resources and people willing to give of their time to help newbies. It's a marvellous caring world we live in, if we just look further than our noses. I still have a long way to go with my education, but the advice we've received along the way has been imeasurable and I'm sure has helped us to help her to negotiate a world that has changed for her beyond recognition.
She's in the hospital at the moment with a UTI which has really thrown her for a loop. We thought we'd loose her this time for sure, but think (after 2 weeks of shoddy NHS care) she will pull through. We don't know what kind of decline she'll have suffered yet because she's still not mobile, but we'll put our trust in the hands of the unknown and hope and probably pray that we can get her back home for just a short while longer.
She's living in a small warden controlled bungalow alone with the support of social care and family carers but we don't think she will be for much longer. Not since this hospitalization anyway. The day before she took ill with the UTI she was walking and talking but since then she hasn't even got out of bed and her talking and memory seem quite shot. We had to make a big fuss this week because they're giving the medication a the wrong times. Exelon should be taken with food to avoid GI problems and because it excretes quickly without, and her quetiepine was not being given until 10pm by which time she was already in her delusional hallucinatory state. It makes you want to shout and scream at these "proffesionals" sometimes, it really does. And if one more nurse says she's doing her best......