Mum update. Now 4 months into residential placement, and reconsidering options.

[jsmith]

Dear all

I'm very grateful for all of the kind and helpful responses I received in my last post, made 8 months ago (http://forum.alzheimers.org.uk/showthread.php?t=26578).

I decided towards the end of 2010 that we had no choice but to move mum into a full residential care home. As described in the previous post, we were simply not coping at home, and it was not a sustainable solution.

After much time researching, and much wrangling with social services, I found an out-of-borough care home which has a specialist early onset ward, who accepted her as a resident. She moved there just after the new year. We were dreading her reaction and I worried intensely about how she would deal with us telling her that she was going to be moving out of the family home and into a new and strange environment. I rallied her friends to reinforce the persuasive messages I was giving her, and she actually dealt with the initial moving process better than expected.

We knew and expected that it was going to be difficult, but had hoped that she would settle in, adapt to, and accept, the new environment. Unfortunately this has not been the case.

I fully respect and am satisfied with the level of care she receives, and the facilities and grounds of the home are excellent. However, she is increasingly unable to deal with the behaviour of many of the other residents. Many are unable to hold any coherent conversation, some are incontinent, some are physically intimating (men are mixed with women), some simply pace the corridors shouting at the top of their lungs. She understands and appreciates that "it's not their fault" as she says, but is nevertheless incredibly distressed at being in this environment. I feel that the range of people in the ward is too wide, and that staff are increasingly consumed by dealing with the behaviour of more difficult residents, leaving others like my mum to their own devices.

I'm struggling to see the light in this situation, although I've gone through the last 4 months telling myself that things will improve. Her attitude to being there is hardening (the first words she'll say to any visitor is that "I hate it here, I can't stay") and as the ward fills up (it was not full when my mother moved in) the environment becomes more unbearable for her.

On top of this, it is a 70 minute drive each way for me and proving to be a pretty stressful journey.

I'm feeling that I need to start exploring other options, but very aware that there are very few other viable choices out there. I can't really imagine putting her in a home with people in their 70s and 80s, and there is no way that she can return to the family home. Her physical care needs are fairly high, and getting worse, but she is still relatively coherent and needs good quality social stimulation in a relatively "normal" environment.

Does anyone have any ideas, suggestions, or creative alternative solutions? I'm wondering whether I might find a small private home somewhere in London that would be able to care for her. Does anyone have any experience of that? I've a relative who ran something similar in Manchester, with 3 or 4 residents at a time.

All help much appreciated as always


J

 

[Grannie G]

If your mother does not have challenging behaviour and there is little risk of her wandering, perhaps you could consider an ordinary residential home.

Do you think your mother might be happier with older people but those who still have language and communication skills, who are able to go to the toilet and feed themselves but just need help being cared for.

This is the type of home my husband is in. There is a combination lock on he door so no one can open it , most residents have language and my husband is the only one who is not mobile. There is no violent or frightening behaviour.

 

[Kerri]

Empathy

Hi J,

I don't have any great solutions, but know what you're going through. My single mother developed Korsakoff's aged 60 and after a long struggle trying to keep her at home (balancing a full time job, a new marriage, and her behavioural and alcohol difficulties) we were eventually forced down the care home route (after a final hospital readmission with a huge paracetamol overdose when we had simply turned our backs for a couple of hours...).

After searching extensively (a gruelling and emotionally exhausting process) around the region I finally found a home that met her fundamental needs - an activities co-ordinator, secure entry/exit (she has still managed to escape once however by scaling the wall - a nightmare), a homely rather than institutional feel and a location she is familiar with. Whilst this still appears the best option I could find, it is very hard to hear "I hate it here", "You've dumped me here", "I am going to run away and die" and variants thereof, and the stimulus, as per your situation, seems to be the resident mix - mum is the youngest by about 20 years and the only one with Korsakoff's and, with no insight into her condition, simply doesn't understand why she lives with "senile" people and finds their behaviour/cognition incredibly frustrating (a frustration which sometimes manifests as behavioural outbursts, which keeps her teetering on the brink of being asked to leave - my big fear).

The problem with Korsakoff's is that very few places specialise in it or appear to understand it, and sufferers can, at face value, appear to have little in the way of impairment - the true extent of brain injury only becomes clear with time, when those spending time with them realise that they may be mobile, intelligent, and hold stimulating and witty conversation, but also might (in my mother's case for example) have incredibly limited short-term memory, be disinhibited and disproportionate in terms of behaviour (a bit like a toddler), and have significant care needs (e.g. wander risk and difficulty with hygiene). My mother can have an intellectual conversation one moment and be falsely accusing staff of abuse, throwing drinks over them, and getting lost on the way back to her room a moment later.

If it helps, my mother does go through periods when she is very happy and settled... This can last for weeks, but equally be interspersed with weeks of unhappiness (when I receive lots of angry threatening phone calls and suicide notes left in her room). This seems to fluctuate around a baseline and there have been times when, during her protracted periods of misery, I have felt equally anxious that I have chosen the wrong place for her, and tortured with guilt - but this can change without warning or reason weeks later and I suppose it may for your mother too.

In my mother's case, I have often toyed with the idea of moving her elsewhere when feeling particularly exasperated, but the more balanced voice inside of me tells me that these problems would probably crop up anywhere, and reflect the internal turmoil and bewilderment of the dementia sufferer feeling lost within themselves and the world, rather than the individual location (for example, my mother always asks to go home, but when alone at home with carers etc. she attempted suicide, which was a complete bombshell we never saw coming - so in retrospect not all that happy there, and certainly not safe).

The important thing to remember is that we are doing our best for them, making sure they are safe and cared for, but there is no perfect solution.

Sorry if this offers little in the way of practical help, but at least it might help to know you are not the only one feeling stressed, tired and guilty (and also to know that after a few years a subtle degree of anaesthesia settles in which takes the edge off those feelings and allows you to continue with your own life too, a bit like the grieving process).

Best wishes,
K

 

[katherine]

Hi there

My mum was 54 when she first showed signs of Alzheimers. That was 10 years ago. I was living in London at the time, 29 years old. My mum was single too and living alone 140 miles away. It was a nightmare. Ultimately i was able to move home and we set up 24 hour care for her at home using mostly direct payments. I don't know your financial situation or whether you could get this but in a extreme situation where she just doesn't settle and is so unhappy, there might be a real argument for care in her own home. Could you sell the house. Buy a small two bedroom place and employ live in carers with the proceeds from the house sale? If you get live in carers they would be cheaper as you're putting a roof over their head. You could try live in care agencies but they're so expensive.
We have four absolutely amazing carers who are reliable and honest and caring and trustworthy. They are out there.
I have to say it's not always been easy managing this situation and I am having major fatigue with the whole thing right now, but at least I know my mum is being looked after OK.
Also sad though it is, after a certain stage this will all get a lot easier as she won't be as aware and so won't be on edge the whole time.
LASTLY, what about medication? There always seems to be a push towards not giving meds but they can really ease people's suffering.
I hope you manage to get things sorted out in a way that makes all of you more at peace with things.
Kate x

 

[jsmith]

Thank you all so much, for taking the time to post your very well explained and intimately personal reflections.

The update situation is - we are in the final stages of the house sale, of which my mother will receive half. I've given the care home notice that she'll be moving out, and am currently looking for somewhere to rent (2 bedroom garden flat, located close to a leafy London suburb shopping centre and my brother), and talking to various agencies/carer employers, and weighing up the options.

The biggest worry for me is that really this path is a calculated gamble - even with the funds from the house sale, the pension lump sum, and small amount of savings mum has, it'll all be spent within 5 years. The cost of renting a place, paying for care, bills, food adds up to around £70,000 a year, which is simply eye watering.

I will be able to save on care costs by employing someone directly which is something I'm considering, but very concerned that I really need a professional support structure behind the carer, and proper training and ongoing assessmentO that these companies provide - a more "fully managed" solution.

One of said companies told me today that mum may be eligible for continuous care, but having researched that tonight, I'm not sure she will be. Despite high cognitive problems, she doesn't present aggressive/challenging behaviour, have skin sores, double incontinence etc. However I need to read through criteria again.

Does anyone have any other ideas of possible avenues of financial support we might be entitled to? I'm shuddering at the thought of shelling out tens of thousands per year to pay for care that I feel mum should be entitled to - certainly there is clearly inadequate provision for early onset sufferers in London and I'm left with few other choices