Down the rabbit hole

[TheCoachman]

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 :

• 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 …

last few weeks mum:

• 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

I have read everything about dementia (just counted 9 books on shelves - plus booklets) followed threads, used the help line and had brilliant advice / guidance. I have put in special clocks, locked radiators, changed the thermostat, do all the shopping / stock freezer and fridge with the ‘special’ (posh) foods that she has always liked, I collect meds, manage the money and bills … and .. and ..

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

 

[Jools1402]

It's so awful isn't it when someone you love just won't be helped. Sometimes all you can do is wait for the crisis to happen. Not much you can do about it, due to non compliance and denial, but it will happen and then hope that it's not too bad. With my Mum - just like with yours - she wasn't eating properly, taking meds properly, wasn't washing properly and wasn't drinking. It ended up with her being admitted to hospital with severe dehydration. From there she was formally diagnosed with moderate atypical Alzeimer's and discharged to a thoroughly disgusting care home. We found a nicer one for her and moved her there where she has been settled ever since. Wishing you luck on your journey and take time to try to care for yourself - you are doing all that is possible.

 

[Gosling]

Firstly Peter, @TheCoachman, please you never have to apologise on this forum for a long post or having a bit of a rant. It certainly can sometimes help just putting things down on here as to how you are feeling.
I do so feel for you - you are so right though, that if she still has capacity to refuse all other care help, apart from your goodself, then it will probably take some crisis or other to happen. Denial of the problem, as you will have read is very very common.
With my dear Mum, it was a crisis of falling at her flat, not remembering to use the alarm thingy around her neck, so waited for me to find her, soiled and in a bad way - hospitalised and then cottage hospital, then residential care (which was great) until she passed almost two ago now.
I explain this, and hope it helps in some way, to show I do understand totally where you are coming from.
I do hope somehow that you are able to find some time for yourself in all of this. Your own physical and mental well being is so important too.

 

[phill]

You say that she “has mental capacity and won’t accept carers to help with hydration, eye care, nutrition or anything else”. But how long ago was the most recent assessment of her mental capacity to make decisions about how her care needs are met? By your description of her, she doesn’t sound as if she has mental. capacity in that domain any longer. If I were you, I’d ask for fresh assessments of her capacity to make decisions about her care, and her capacity to make decisions about where to live.

 

[backin]

Has she had a social service assessment?

 

[JHA]

Firstly you say this has happened this week - are you sure she does not have some sort of infection as that can literally play havoc.

Like your mom mine was in total self denial there was nothing wrong with her. At one point she was hospitalised with delerium for a couple of weeks then discharged to an assessment bed and I stupidly let social services persuade me to allow her to try being home alone. Carers were provided by social services on a temporary basis and as soon as she had to take over the payment they were basically sacked so her care was left to me. Whilst the carers were in place she refused to allow them to do anything and on one occasion screwed up the toast they had made her and she pushed them out of the door.

To be honest she was relatively self sufficient - could wash and dress herself and take the tablets that I would leave out for her. I would just take lunch and dinner over every day and she would potter around. Unfortunately she began to wander and went out at 2am in the morning as she thought there was someone in her bedroom - the police picked her up and it was agreed with all involved that she could no longer be left alone and respite was organised which eventually went permanent.

I cannot say my mom is happy in the care home and I wish there was an alternative but she is safe.

Sometimes venting is all we have basically your bucket is full and overflowing so let it all out - once it is empty you can start again. Take care and be kind to yourself.

 

[TheCoachman]

Thank you all for your kind and supportive responses - I feel a real sense of community in that we all in this or have been in this … not what we expected to be doing with our lives ;-)
on a POSITIVE … took my mum for coffee at Cafe Nero this afternoon .. as we were leaving a woman called me over and whispered “you are so kind - look after yourself“ … then later in M&S I had to take another mum ‘urgent’ call (as discretely as possible) and the lady on the checkout said “I don't want to intrude but that sounded lovely … my mother died of dementia and I know how hard it can be “ ……though we can feel as carers very alone at times …..there are so many people out there who understand / have been through it themselves ;-)
peter

 

[JHA]

Sadly it is a lonely place and those that really understand are either going through it or have gone through it.

I'm glad you had some positives today.

 

[maggie6445]

@TheCoachman , I'm sorry to hear about your mum.
I would question mental capacity if a person was refusing treatment for glaucoma or dry eye. . I would argue that a person with mental capacity wouldn't allow their eyesight to be compromised by refusing treatment. I would arrange carers for her to do the medication.
Your mum sounds a lot like my OH in ability and if were I not with him 24/7 then frankly , he would be in a care home.
I know that's a difficult decision but I think it's one you need to be considering seriously before a crisis happens.
Take care of yourself too

 

[Rosettastone57]

My mother in law was very similar, refused personal care even with private carers, she was self funding. We organised carers whether she liked it or not. Her hair wasn't washed for 3 years. She reluctantly accepted the carers preparing her meals. She also refused medical treatment on many occasions and had to have carers put in her hearing aids every morning. She point blank refused to leave her house even to visit us. My husband recognised she should go into care but wasn't prepared to dupe her out of the house. So we waited for a crisis scenario and eventually she became ill and went into hospital. Once there we organised a care home for her and she went straight to the home from hospital and never went back to her own home.