Do you think I'm in denial or do you think there may be some sense in my thinking?

[EllieS]

Mum is in an emi dementia home primarily because she left her previous residential home on 4 occasions over a period of 18 months.


Her short term memory is poor and she left to go home. Although she was living in an area she was not familiar with, on 2 occasions she found a local taxi company and simply asked to be taken to her home town - which was 40 miles away.

On the 1st occasion she was dropped close to her last home and she walked to my brothers house around the corner. (Coincidentally or not coincidentally he had not visited her for quite some time).

On the 2nd occasion she was dropped close to what was our family home until about 1980.

On the other occasions she was found en route to the taxi and latterly a lady had asked he into her home as she was confused.

I accept that Mum has dementia - but if I'm honest I don't necessarily accept the diagnosis of early AD based on a scan which showed early AD. How on earth can they differentiate between dementia and AD specifically? My understanding is that this can only be confirmed after death.

While in the Residential Home I was told that 90% of the time she was no trouble
at all. She was very quiet and her personal hygiene was not good and she'd lost the will to live (due to the circumstances surrounding Dad's death), short term memory was dreadful and she had not grieved and was very depressed.

Anyway, she's been in the EMI Care home now for 6 weeks (early days I know) and with regular visits from myself and my 2 adult sons she seems to be brighter and is able to talk about Dad and everything else really. Her short term memory is obviously still bad - she doesn't know where she's living but she does kind of remember that she's just up the road from me.

She's always pleased to see us, is content to sit in the Residents lounge, communicates with the staff or one or two of the residents who are able to talk to her (but doesn't really initiate conversations with them) takes a keen interest in a puzzle we're doing together and has to date made no attempt to even find her way to the exit door. Her memory is however so bad that she can't find her way to her own room which is probably why she sits in the main lounge.

I worry so much that she's not in the right place - she sometimes says things like "how did it come to this" - even though she is very tolerant of the environment. She just isn't anything like as disturbed/unwell as the other residents.

My thoughts go to: Would she be better at home in her flat with a full time Carer (but she only has 1 bedroom) and the flat is 40 miles from me; or would she be better in a small home - there are only 18 residents where she is and there are usually 3 or 4 staff.

I'm struggling with all of these thoughts and have taken note of many comments on the various threads regarding guilt, martyrdom etc. BUT I JUST CAN'T SEEM TO GET PEACE OF MIND. I know I'm doing my best but somehow need to be sure that there is not a better alternative at this stage of Mum's life.

I would much appreciate it if you could focus your thoughts on Mum specifically and whether you believe I am in denial or whether maybe you agree that there might be an alternative in your replies on this occasion - 'cos I somehow need to lay this to rest if I possibly can, with your HELP.

I hope you can understand my ramblings!

Thank you.

Ellie

 

[jc141265]

Things to think about...

Ellie,

You are not in denial you are struggling with an issue that really has no easy answers.

I understand your lack of peace of mind and am doubtful that I can bring any true peace to you, but in considering where your Mum should live I guess you have to think about several things at the same time:

1. Safety, in other homes is she likely to wander away again and what kind of harm might come to her if she did? Can you accept the consequences of if harm came to her? Is there better safety in her current surroundings, is the unhappiness in being there risking emotional harm that outweighs other harms if she were elsewhere? Emotional, physical, mental harm must be considered.

2. Quality of care, does she receive a higher quality of care at the current home or elsewhere, and this means personal interactions, acknowledgement, love, visitors as well as ordinary care issues, weigh all this up;

3. You, you are your Mum's best asset, if she loses connection with you through exhaustion or distance is this in her best interests?

4. Money, unfortunately this does come into it and you have to plan for the long term, if she's so bright now this could be a long journey, this also related to #3 because if you can't afford to be there for her in the future (i.e. need to work more) this is a concern too;

You have probably thought about all of these things and I am not offering anything new, so I understand if you are frustrated with me, but i just thought it might help to lay it out in front of you in words for a bit of clarity.

As for the diagnosis of AD, I assume you are aware that diagnosis can not be confirmed until death/autopsy. I suspect my father has an obscure early onset dementia as well as he too is very dissimilar to the other people he lives with. But there is also the fact that AD affects different parts of the brain in different people, so their symptoms can be different, my Dad displays more fronto-temporal (region of the brain) symptoms and has recently been reclassified as having fronto-temporal dementia of the Alzheimers type (still didn't get rid of that #$%# Alzheimers word though, dammit). This reclassification only took place after constant harassment of the doctor about his odd symptoms, though. There is one other thing, a family member's friend's Dad was originally diagnosed with early onset AD but then was later found to have some kind of water on the brain condition which was alleviated enormously by surgery, however 2 years on and he is again going downhill. It appears that the only thing that can be relied upon about most dementias is that they will be progressively debilitating unfortunately.

I sometimes think to myself they can't tell me what causes it, so does that mean that he has just as much chance of recovering as getting worse and then cross my fingers, but so far no luck.

The probability appears that your mother will get worse (I hate saying that) in time and you need to consider this in thinking about where she will live. Is staying in the one place going to be better than changing here surroundings each time it is needed?

What sucks about dementia is also that the sufferers appear to have periods of appearing to improve and that gets your hopes up, only for them to be knocked down again at a later point.

Speaking from 5/6 years experience, Dad is in Stage 7, last stage. I hope I have helped in some way and I thank you for your post because it makes me realise I'm not alone in worrying about my own father's placement in a home and diagnosis.

Take care,

 

[daughter]

Hi Ellie,

Your post struck a chord with me because my Mum said to me, just this morning, that she wonders if there was more she could have done to prevent Dad going into a Home. (He's been there nearly a year now, and still the guilt goes on). So I guess 'peace of mind' is something that isn't completely obtainable in these situations.

I would imagine that Nat's good analysis will help in trying to put it all into some sort of order, so that you can work out what best suits both you and your Mum.

Best wishes,

 

[Sandy]

Hi Ellie,

I don't really have much to add to Nat's and Hazel's comments, but would like to chip in a few points.

Regarding the EMI care home vs. a residential care home, my understanding from reading information on the Commission for Social Care Inspection web site (http://www.csci.org.uk/ ) is that only some care homes are licensed to care for people with dementia. If a care home is licensed to care for people with dimentia they have to meet certain criteria to show that they offer a safe and appropriate environment - including things like security and staff ratios.

In that sense, I don't think that there are such things as secure residential homes. Given your mum's diagnosis of AD, her escapes from other accomodation and the "hitting the nurse" incident, it would be hard to see a non-EMI solution at this point.

I understand where you're coming from when you compare your mum to the other residents in her home. Several months ago my husband and I were looking at EMI homes for my father-in-law and (given the fact that he is in mid-stage) it was a bit of a shock to see the further ends of the spectrum. I suppose like any new situation, with time, the initial shock wears off and you can possibly see the other people in her home in a slightly different light.

Now the big questions:

"Would she be better at home in her flat with a full time Carer (but she only has 1 bedroom) and the flat is 40 miles from me?"

There are so many ways this arrangement could go pear-shaped. My biggest concern would be for your mother's safety. Things like wandering and adequate supervision of the care arrangements spring to mind. Also, it is not unusual for a person with AD to refuse the services of a carer - to see them as an intruder and attempt to eject them from the home. That is of course an entirely logical reaction if you don't recognise the carer and don't think you need care. Without a recognised family member as part of the regular (like daily) care team, this type of arrangement could break down quickly.

"Would she be better in a small home - there are only 18 residents where she is and there are usually 3 or 4 staff"

Again, I would think that the staff to patient ratio is governed by the minimum care standards. If you think the home is under-staffed you might want to check its inspection report on the CSCI web site or have a word with the manager. EMI beds are not always very easy to come by. If it helps with that niggling feeling that you have, it might be worthwhile to just look at other homes so you feel that you've seen a good sample. Unless you can find a tangible difference (that can't be resolved with the current home), it would be good to approach another move with caution.

By the way, you mentioned a visit from the new GP and that your mother had previously been put on Aricept with negative results. Are there any plans to try another medication for AD?

Take care,

Sandy