My mother has dementia and other family members want to put her in a home. I feel that this isn't the best thing and keeping her with me is the best option. The thing is I live 100 miles away from her current home. I am told moving her to a new environment will have a damaging effect on her as people with dementia can not take change. Is this true ? She doesn't want to go in a home not one bit.
I have also discovered a family member has agreed that should my mother have a heart attack she should not be resuscitated. I was surprised at this. It seems wrong. Is this routinely done with people with dementia ? Can one family member allow this if other family members and the person with dementia doesn't want it ?
This question will face many, many family members and partners and is by nature of all the implications, a very big question. As people state quite correctly, each and every case is different, so you cannot provide a kind of template by which you access a smooth and viable outcome. It depends on so many factors. What kind of dementia? What stage? What other ailments are in place. A very close analysis on what is currently taking place. Behaviour, situation, ongoing care, anything which relates to a life and a life lived perhaps alone.
Allow me to briefly say what my own situation was in respect of this whole question of 'Care'.
I lived with my own mother after she was widowed. At that time life was as good as it could be in as much as dementia was not presenting in any noticeable way. Then things became more difficult when mother's anxiety developed (this was Alzheimer's slowly developing) and the daily routine adapted to that. For example, I could not stay away from home for too long, owing to my mother's anxiety, which grew into a quite serious problem. Mother's independence was slowly becoming compromised by the onset of dementia (Alzheimer's and vascular dementia) which demanded an assessment and a referral to a specialist, whereby a diagnosis confirmed by a scan, what I suspected earlier on - Alzheimer's disease. From this point, my daily life was taken up with complete and total care. Cooking meals, enabling proper medication (not for dementia) some leisure time (walks and local excursions) and providing all the 'mobility' items which gave mother a degree of independence whether in the home or when walking outdoors.
Then, once incontinence became part and parcel of the daily regime, I had to plan for a practicable means by which mother could avoid any unnecessary discomfort or angst, i.e. a downstairs commode, also one for outside in the summer house. Special orders for appropriate 'pads', also a close watch on potential UTI's - so a regular urinalysis check - attention to protection on the bed for night-time 'accidents' and careful attention to other possible outcomes i.e. leg ulcers, rashes, apart from her osteoarthritis and macular degeneration. All of this embraced most of my time and this was BEFORE dementia truly raised its ugly head. Once mother's behaviour entered the stage whereby it affected everything that she did, things then became not only difficult, but verged on what I term' unwitting torment'. This in essence is where the notion of caring becomes clouded, because it enters another world altogether. The regime which was managed and a two-way thing, . i.e my mother could assist in certain things, was able to make light of personal procedures, we could enjoy a laugh in accord - - all of this changed. Washing her hair would bring about a bout of agitated screaming, giving medication would often result in tablets being spat out or anger at being offered them. Food prepared daily by me - always changing and varying the diet - might be refused, thrown away or seen as something else. "This is NOT fish! It's chicken!!! You said it was fish!!! I want fish!!". The meal WAS fish. Then, there was 'folding'. A trait often seen in dementia or Alzheimer's world. Folding the tablecloth, tissues, trying to fold a mat or seeing the mat as something else entirely. Mother's macular degeneration presented with 'Charles Bonnet Syndrome' for about a year or so. 'Hallucinations' came about. Once she saw me seated in the fireplace, as a small boy. It was very real to her and upsetting. Another time, she found sticky threads clinging to her fingers and tried in vain to pull them off. I, at that stage, had not yet learned NEVER EVER CONTRADICT. I said "But there is nothing there, Mum? No sticky threads. Nothing". Cue shouting and anger and total frustrated dear and loving mother, behaving like someone who has just been abused! An hour or so later and things calm down.
And so we can go on. Traumas here and there. Awkward moments in the supermarket, so we have to vacate quickly, as mother cries out in a paranoid manner. Precarious moments in the car - door handles being grabbed and more screaming "Help! Police! Oh God help me!!" And a mad dash to the surgery before anything truly dramatic takes place. Calls to the daycare centre, because mother is agitated and upsetting others there. Rambling conversations - sometimes for hours - television a threat, so have to turn it off - 'accidents' in the lounge (incontinence) - tears and once abject and profound sobbing ...... All of this and much much more, BEFORE 'emergency respite' - which I will not describe nor dwell upon owing to the fact that it remains vivid and painful a memory. So 'Care' came about without choice. No choice whatsoever. If my mother had remained at home, I dread to think what the eventual outcome might have been. I was ill. It had become a living nightmare and something which one could never ever perceive happening. A truly loving and wonderful mother, now become like another person, a stranger. Sometimes angry, sometimes calm and affectionate, sometimes that rare and
treasured moment of 'lucidity' at bedtime, a 'goodnight' kiss and a 'genuine' smile.
This is part of my own true story with my late mother. She died just a few weeks off 100 years of age. The dementia took her life. I tried my utmost to 'care' to a point which breaks the heart and renders you more or less useless and that means useless to the one you love. And so Care becomes the only realistic option because it represents -- when it is GOOD - the only viable means by which you sustain a dementia-afflicted life, what is often termed 'best interests' for the one whom you love.
"Do Not Resuscitate" is basically making a decision on termination of a life. That requires a great deal of thought on behalf of the one concerned, .i.e. when they have capacity - or the family members involved in such a decision. If you hold medical Power Of Attorney then that might clarify any uncertainty. Frankly, I always kept very close contact with the clinical staff and consultant, to ascertain the important elements here -
comfort and 'best interests'. There can be nothing more distressing than having a loved one live on in pain or in a state which is even worse than before, yet still with a limited outcome after all that. If you really 'care' you pay very close attention to the quality of that care throughout a given life. Up to the very end.
As to whether a move can exacerbate the dementia in a negative way. It depends. I see people being taken out from the Care Home on a regular basis by their family, only to be returned again in good form. Others can become very unsettled -- even when moving from a familiar lounge into another room, whilst cleaning takes place. One has to judge all of this with quite intense scrutiny. What I have set out above is true and authentic - no 'poetic licence'.
But the 'actual' experience differs from the text, in as much as it is a very personal and individual journey and that is something that even the most meaningful and accurate narrative can never hope to replicate.
