This week mum ( I am the carer son - my brother and sister live elsewhere and are not involved in any way - cest la vie ! ) has started to show signs of middle stage dementia ! - SO NOW the journey really begins.
mum is 93 - severe hearing impairment (very expensive rechargeable hearing aids), severe vision impairement ( glaucoma , dry macula degeneration, and severe dry eyes - eye drops morning evening and for dry eyes during the day) …. Mobile with a rolator and no other health conditions.
Mum is also :
But now comes the **** as things fall apart!
I see mum for two hours three times a week and try and encourage her in all the self care things - but as mum has mental capacity and won’t accept carers to help with hydration, eye care, nutrition or anything else - her sight will rapidly deteriorate, she will continue to loose weight and probably get so dehydrated she will end up in hospital with a forced Social services assessment (she would refuse otherwise - and return home with carers or to residential home.
it’s all so inevitable and so awful to have to see this happen with someone you care for. Again and again I ask myself why are people who need carers able to refuse them even when it’s in their best interests - I know it’s about allowing them self agency - but it leads inevitably until that crunch towards the end of the journey when they are a’risk’ - and on the way burns out the carer.
sorry that once again this is a rant - because of course it is an inevitable journey towards a horrible death (based on who the individual PWD was and is - their personality as well as their type of dementia) it an uncontrollable , frightening and most often horrifying journey that cannot be prevented. And because we cannot really control, manage or prevent much that is awful - venting is perhaps the only break.
My mum says she wishes she just wishes she won’t wake up one morning - I wish that too! What am I looking for .. just a peaceful end for mum (and one for me too;-)
peter
mum is 93 - severe hearing impairment (very expensive rechargeable hearing aids), severe vision impairement ( glaucoma , dry macula degeneration, and severe dry eyes - eye drops morning evening and for dry eyes during the day) …. Mobile with a rolator and no other health conditions.
Mum is also :
- totally anti social - has no friends and would NEVER go to a community or day centre - Only WANTS MY COMPANY / help.
- in total denial about having dementia or even about forgetting / not remembering things and about her confusion.
- has always been capable and has lived independently last 6 years in over 50s flat i found near me after my father died
- absolutely denies she has any difficulties and refuses carers coming. I pay for a carer an hour a week - mum calls her the ‘servant’ moans about how useless she is , won’t even accept a cup of tea from her, and only lets her vacuum the flat (waste of an hour and money)
- visited GP few times - checks her blood pressure - nothing else - no advice or …
- forgot to charge her hearing aids (she is totally dependant on these) and insisted her hearing had gone wrong - today we met and she suddenly realising she was without one of the hearing aids and thought she had lost it - “never mind“ she said (her answer to everything) - I was in a panic as to replace would have been £1500. - eventually found it left in charger
- keeps asking for repeat as if she cannot hear - actually can’t grasp / follow (Hence taking books were waste of time)
- rang me in a panic (8 voicemails) about a strange jacket that had appeared in her flat. When I went over it was the one she had been wearing that morning and had had for a year.
- rang to day in panic “where is the thing .. the THING …THING“ turned out to mean telly remote - on table in front of her. Increasingly she cannot find the name of items so just shouts “the THING”
- rang to tell me two blue boxes had suddenly appeared .. eventually I worked out she meant the two white Tupperware boxes I fill with M&S snacks every week (last three months) to encourage her to eat(she doesn’t remember to - or to drink (just doesn’t occur to her despite all my verbal and written reminders))
- when I visited went into flood of tears, then fit of anger and shouting - she knows something is happening to her / senses she is loosing it but of course can’t work it out or articulate what. she kept saying “I am so depressed - but I don’t get depressed” …and of course the usual “I want to die, I’m such a burden, I don’t want to be here”
- has TV on all the time - doesn’t know what she is watching has watched - I think she can no longer change channels
But now comes the **** as things fall apart!
I see mum for two hours three times a week and try and encourage her in all the self care things - but as mum has mental capacity and won’t accept carers to help with hydration, eye care, nutrition or anything else - her sight will rapidly deteriorate, she will continue to loose weight and probably get so dehydrated she will end up in hospital with a forced Social services assessment (she would refuse otherwise - and return home with carers or to residential home.
it’s all so inevitable and so awful to have to see this happen with someone you care for. Again and again I ask myself why are people who need carers able to refuse them even when it’s in their best interests - I know it’s about allowing them self agency - but it leads inevitably until that crunch towards the end of the journey when they are a’risk’ - and on the way burns out the carer.
sorry that once again this is a rant - because of course it is an inevitable journey towards a horrible death (based on who the individual PWD was and is - their personality as well as their type of dementia) it an uncontrollable , frightening and most often horrifying journey that cannot be prevented. And because we cannot really control, manage or prevent much that is awful - venting is perhaps the only break.
My mum says she wishes she just wishes she won’t wake up one morning - I wish that too! What am I looking for .. just a peaceful end for mum (and one for me too;-)
peter