My poor mum

[Dee]

Hello everyone
I have been a member of TP for a few years now since my mum was diagnosed with Vascular dementia. I dont post often as to be honest I have had a relatively easy time of it compared to many of you and I feel that I do not have anything of value to add. However, I do read the message board most days and am full of admiration for you all. I am posting today because I just need to talk to people who understand - I know this seems selfish but generally I am pretty strong and self reliant but today it all seems a bit much so please bear with me!

Mum has been in a care home for three years. During that time she has slowly deteriorated (but very slowly) and generally seemed content although at times rather depressed. She has an awareness of the predicament in which she has found herself which is so sad for her. Over the years we have been able to have her to our home most Sundays and friends have been over to lunch etc etc so we have tried hard to make sure that her quality of life has been as high as possible.

However, over the last month or so her decline has been rapid to say the least. She is now a danger to herself in that she wanders constantly and is in danger of causing herself harm. She already appears to have broken a finger and no one knows how. The staff feel (and I agree) that the time has come to move her into the EMI bit of the home to keep her safe and that will probably happen today. I feel so sad that we are now at the stage where she is so anxious/confused/upset that she doesnt know me and just feels so alone and frightened all the time. I have always been able to calm her and make her feel safe but I cant now and I feel that I am letting her down. Any strategy seems to fail - she wanders all night because she is afraid of being alone and wanders all day and says that she is frightened of all the people around her - poor lady.

Does anyone have any experience of this happening to their loved ones? Does it resolve or is this the last bit of this terrible journey for her? I hate to see her like this and a bad bit of me just wishes it could be over for her. Sorry to ramble, just needed to get it off my chest. Thanks for listening. Dee x

 

[Skye]

Hi Dee

My husband John has been in an EMI unit for a year, though he transferred there directly from hospital.

I can honestly say that the care he gets is wonderful.

Your mum will have much more company, as the staffing ratio is higher, and the staff are all dementia-trained, and know how important it is to talk to the residents, and try to stimulate them.

I'm afraid the wandering may not stop, there are a few in John's unit who wander all the time, day and night. One in particular has frequent falls, and always has plasters on his head. Buthe just won't sit for more than five minutes.

But the staff understand this, and the night staff make him cups of tea, and talk to him. It is not a problem.

There is also the advantage that your mum will be safe, as the doors to the unit will be locked.

I know it's not easy, and I was horrified at first that John was to go there. But I could now have him transferred to the nursing section, and that's the last thing I want.

I hope it all goes well. Give it time, it will be a while before you and your mum are comfortable with the new arrangements, but I hope that will come.

Love,

 

[mumof3]

In the same boat

Hi Dee

My mother-in-law went into the EMI unit of her nursing home 5 weeks ago initially as an emergency respite place but we now know from staff that she will remain there rather than moving into the elderly frail unit. At first like Hazel we were really upset as in our case we had preconceived ideas about what the unit would be like. Now we appreciate that my MIL really needs to be there, the staff ratios are better and all the residents seem to gravitate to the lounge of their own accord rather than remaining in their own rooms as in the main unit. MY MIL craves company and reassurance.

My MIL also is very very anxious. She has long been beyond answering any questions or putting her fears into words though. She constantly paces and cannot sit still. Our visits are spent moving from bedroom to lounge, outside, going upstairs, back to the lounge, etc, etc. When we take her out, as soon as we get somewhere ( our house or just a short way for a coffee etc) she asks why is she there, "lets go then", cannot sit for the shortest time. It's wearing for us, it must exhaust her. Also we have no choice but to take the two youngest children, 4 and 7, with us on visits unless my husband goes alone which I don't feel is fair to him. This is an added stress but my MIL still enjoys seeing them.

Nothing we can say or do seems to have any effect. Last week diazepam was prescribed and we are hoping that this will help with the anxiety. She has also had citalopram for the last 3 years or so and lorazepam was prescribed when she initially went into the nursing home but this was only for a short time. "I thought they were tryig to kill me" is something that my MIL often repeats. She said this at home latterly too though so we think it may be to do with taking her pills (she has many) and which she could sometimes be difficult about with the carers at home.

We are grateful that my MIL still recognises us as friendly faces although she has not been able to identify relationships for a long time. My husband is sometimes her husband, her boyfriend and her grandpa - all introduced as such to staff! I am usually her sister and children are niece and nephew when remembered. We don't correct her just go with the flow.

We are really struggling with visits at the moment. I hate having to take the children but have little choice. On Sunday my MIL was asking us to take her home (the first time she has mentioned it since going into the nursing home) and sobbed for most of the visit. It's beyond sad but what can we do. Leaving her is dreadful with a member of staff having to take her by the arm and lead her away so we usually try to coincide leaving with a meal. Still she tries to come away with us "Lets go then".

I don't have any suggestions Dee, we are just struggling through at the moment and hoping that the medication will alleviate some of my MIL's distress. A UTI can cause more confusion and agitation and I know that my MIL is regularly checked for this as she has a history of it. It may be worth asking staff whether this has been checked in your mum's case.

Last weekend we also made a start on sorting out my MIL's place for rent/sale as we are aware that the clock is ticking on the 12week disregard. It just makes the situation even worse, having to clear out her life there while she appears so unhappy in the NH.

Take care and hope your mum becomes a bit more settled soon.

 

[Lanie]

Hi Dee

I know its hard but you just have to try and take comfort from the fact that she will be safe and looked after.
Dealing with this illness is never easy.

Take care

Lanie

 

[Dee]

Thank you all for your replies - it was good of you to take the time and as always I was reminded that others have so much more to bear.

I appreciate your views - and am pleased that your family members are better in the EMI units of their care homes. When I went in yesterday I had a long chat with the nursing staff who are very good with mum and it was felt that at present due to the dynamics in the EMI unit (which is very small) that she is probably safer in the main part of the home. There are several very aggressive ladies in the unit apparently and the girls felt mum may be more vunerable there. So, its been decided to up the staffing on her wing so that someone can be with her much more at the times of day when she is particularly bad and I cant be there. Whilst this may not be the long term solution it will at least help in the short term.

Her medication is being reviewed by the GP as she has quite complex medical needs these days too.

Again, thanks for the input - it made me realise that none of us are alone in this battle on behalf of those we love.

Dee x

 

[clifffan2002]

My mum

my mum had present is laying in a hopsital bed waiting for us to find her a good home. I am not coping very well with it at all, as i am continual in tears at the moment, something my brother cant understand.

 

[Christinec]

Hi Cliffan,

Brothers -grrr. Suppose some are great. Mine manages to visit every 18 months and does not want to be involved.

I am sure that other TP members will reply soon and TP is really good as you do not feel so alone. Leaving Mum at her home was one of the worst days of my life. Now 18 months later she looks better than she did several years ago and is no more unhappy than she was then - even occasionally mentions something positive.

Your distress is I would say normal. Alheimers is a horrible disease and the sufferer and family go through so many stages. It helped me to do what practical things I could eg investigate the local homes and try to make sure Mum went to the best one for her. There is lots of information on TP and the Society web site on about how to do that.

All you can do is concentrate on what you might have some control over and do the best you can for your Mum. There are some things you just cannot change.

I hope that you feel better soon and remember there are places you can go for help. My local Alheimers Society really helped me when I was falling apart or your GP may be able to offer some support.

Wishing you all the best and keep posting . There is so much help and information here.

 

[clifffan2002]

thank you

I have to be strong, as I have a family to look after and also a really lovely husband. I know I will get use to it in the end. My brother and I are going to look at homes tomorrow. Thank you for listening, I have a very good friend and also my husband will listen even when I am in floods of tears