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General advice needed

(12 Posts)
Numberlock Thu 09-May-13 16:50:13

Hi all, this is my first time posting in this section although I'm a regular poster on other sections of MN.

My mum is 87 and has lived in residential care for the last 4 years, following surgery for bowel cancer and being unable to return home after that.

Since then she has become increasingly confused, forgetful etc but as she has been in a care home, it has not been a cause for concern, eg her safety has not been at risk.

However, now the staff at the home have told me that she has started to become aggressive towards the other residents so they have arranged for a mental assessment to be carried out next week.

This is all new to me so I guess I'm looking for information/support from people who have been through the same and what is likely to happen next, in terms of her health.

The home where she currently lives have a sister home that specifically deal with dementia so she could move there. However, as she lives 70miles away from me, I'm thinking this would the time to move her closer to me.

When she first moved into care, she was still able to get out and walk to the park or the local shops but has not done so for some time now. Therefore, it seems to make sense that if she has to move and will no longer be leaving the home, it would be better for her to be near me. I could visit her a lot more regularly, sometimes I only get to see her once or twice a month.

Anyway, that's turned into a longer post than I expected! Thanks in advance for all input, advice and comments.

aldeburgh Fri 10-May-13 03:27:15

Bumping for you... Sounds really tough. I would say bringing her closer to you would make a lot og sense. Good luck

Chottie Fri 10-May-13 03:44:20

I would agree that moving her closer would be a good idea.

I was the carer for my elderly aunt who lived 90 miles away. When she first went into a home, we found one locally to her, thinking it was the area she had lived in all her life, her friends could visit her etc. In hindsight it would have been better to have moved her nearer. Her friends either died or became infirm and were unable to visit, but as my cousin was settled in the home, she liked the priest and the staff were excellent, we did not move her. But, the regular 160 round trips to visit her were very tiring and time consuming for us. If she had been nearer, we could have visited more frequently.

I hope everything works out for you and your mum.

Numberlock Fri 10-May-13 06:23:36

Thanks Chottie. That's exactly the same as my mum. When she first moved she was able to go out on her own plus had friends locally who visited and took her out. As with your aunt, they have now either passed away or are unable to visit and I'm her only family so the only visitor.

Ps. Thanks for bumping aldeburgh. I also posted this in Chat and have had some answers there buts will keep this thread too if that's ok?

CMOTDibbler Fri 10-May-13 09:46:26

I replied on your other thread, but forgot to say that I'd absolutley move her close to you if she's going to have to move anyway. Everything is so much easier when they are close geographically, and with dementia you need to be the advocate in hospital, the one that looks at their clothes and buys new ones, and unfortunatly also the one that keeps a close eye on how things are going with care being provided.

When you choose a new home, do make sure you look at it with 'dementia' eyes on - for instance a new place near us has lovely gardens with benches, and you'd think it was fab as sitting there you can see the world going past. But its not secure, so is unusable for those with dementia.
Another place (you can see down into the gardens from the road) has very secure gardens which have been designed to allow wandering in a constructive way with raised veg beds, pergolas, seats dotted around.

Also, my mum would hate people trying to get her to participate in 'sing songs', especially of music dating to the 40's (when she was born), and by the time she goes into care, she might not be able to express that properly and would get frustrated

Numberlock Fri 10-May-13 09:52:34

Yes good points, thank you. I am going to start ringing round local homes today that specialise in dementia care so that when the time comes we are ready.

Needmoresleep Fri 10-May-13 16:51:31

Moving closer sounds like a good idea, and the aggression sounds typical of the early stages of dementia. Not surprising I guess if you are losing orientation and so frightened and worried. I am told that this can recede as the illness progresses.

If she were staying where she is I would try to get tips from the people assessing her. Dementia care can vary a lot and the big brand name homes are not always the best. NHS and SS staff wont be able to recommend individual homes but they might be prepared to tell you which ones you might look at. Your GP will have visited local homes and again might point you in the right direction, or alert you to concerns if the one you are thinking of is unsuitable. Some chains, eg BUPA seem to use similar decor across the country. This could make move easier as the new home will appear familiar.

I found it useful to attend my mums memory assessment, though not sure if this is the same as the mental assessment proposed for your mum. Not only was there a questionnaire for me, but the test was in about 7 parts. She passed six with flying colours, and failed the last miserably, giving me a better understanding of where the problems lie. For example my mother still have very good speech and conversation, which means she needs to be with others who have the same.

Numberlock Mon 13-May-13 14:38:27

Hi Needmoresleep, thanks for the reply.

Could you give me more information on what your mum's assessment involved and what kind of questions I should be asking?

As an update, over the weekend, my mum was taken to A&E as her care home thought she had had a minor stroke. However, the hospital could not find anything wrong so she was sent back to the home. This Wednesday we are going to a full-day clinic for further tests/assessments so will know more after that.

Needmoresleep Tue 14-May-13 09:56:17

There is some irony in not being able to remember the details of the memory assessment....

We were warned in advance it would take about 90 minutes and I think it was a standard test. My mother was initially reluctant to have me there but the specialist nurse administering the test pursuaded her. I got my own questionnaire which allowed me to score my perception of her current capacities.

The test covered what I assume were diffetet bits of the brain. Drawing a circle, naming as many animals as possible within a certain time, reading instructions and following them, some maths. Just when I thought she would be offered a place in a super selective grammar school, we got to the orientation section. Name members of your family, who is the Prime Minister, what floor of the building were we on, what year, what season.

The person administering the test was lovely and there was some discussion of my mother's circumstances. The assessment was only a couple of months after my mother had had a fall which precipitated a crisis so I got to ask questions, eg was it reasonable for me to have taken away my mums cheque book and driving licence, plus one or two about caring arrangements.

At the start the nurse asked a lot of questions about my mums own history establishing a chronology. Things I did not know. Really interesting.

It was a positive experience in the middle of quite a fraught time.

Numberlock Tue 14-May-13 09:59:05

Thanks, Needmoresleep. Did they give you a diagnosis there and then? What happened at the end of the test?

Needmoresleep Tue 14-May-13 11:33:59

Next steps were my mother was discussed at the team's weekly meeting which led to her getting a brain scan to look to see if what type of damage was there. Plus a referral to the community mental health team. Everyone has been very good at phoning me with updates and including me in the decision making.

The brain scan was followed by an appointment with a specialist who formally diagnosed Alzheimers and who prescribed Aricept in the first instance, and a visit by the community mental health nurse. The latter did a visit and has confirmed that all is well and has discharged my mum. This is fine and what I wanted. If things change and I need help I can phone and they will restart the file. My mum will be under the care of the medical specialist for six months or until they are confident of her treatment, then she will be discharged care of the GP.

In short, and with a Social Services assessment and attendance allowance, if there is another crisis I can get them all engaged, and her file is now well flagged if she ends up in hospital again. (Four months ago they gave two days notice of a discharge to an empty flat on Christmas eve with no care package and family 150 miles away with a broken hip and wrist.) I also have people I can turn to for help and advice on what may be a long journey.

Numberlock Thu 16-May-13 19:18:48

My mum has had two days of tests and assessments and has been diagnosed with moderate to severe dementia, a combination of frontal lobe, Alzheimer's and vascular. So at least now I have a formal diagnosis and can work out the next stage of her care, whether it is EMI or EMD.

She will now be seen by a psychiatrist to decide whether to prescribe medication.

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