Advice please - this is all pretty new to me

[Kay]

Hi Folks

My Mum has just recently been diagnosed with AD, I was not surprised as I have been expecting this news for some time - at the moment she is in denial and quite frankly I'm not sure I blame her but its not helping. She is due to have a home assesment to evaluate what she needs. Our problem is that we don't live in the same county. Mum is in living on her own in the North West (my father having died 30 years ago) while my brothers and I are in the North East and Yorkshire. Her friend is the primary carer but i think its getting too much for one person to cope with. She stayed with me for a couple of days recently - to say it was hard work would be an understatement - my hats off to anyone looking after someone with dementia full time - I really have no idea how you cope. My question is this, my brother feels that it would be better if she was closer to us however I wonder if a move at this stage may only serve to confuse her more - she is only in the early stages of AD. Does anyone have any suggestions as to which would be best for her?

Thanks in advance.

Kay

 

[Chris]

Hello Kay

First - I'm so sorry to hear your news. Hope finding this Forum will help you.

Norman often posts messages & has a saying we all find helpful - "Day by Day" - in the beginning especially I found it helped not to look too far ahead.

After 12 - 14 years of this (helping my Mum who has vascular dementia) i'd say - look closely at all the options - its very easy to think "ooh no - dont htnk Mum would like this or that" - we took up a Relief care service far too late for example , ditto extra days at day care .

Today there are more options - like Extra Care Housing (sheltered housing where people live in their own little units) - which sometimes are a Home for Life (with nursing carers coming in several times a day or whatever is needed and lots of fetaures to help pepole who like to walk around a lot etc etc) - it might be worth findign out (from Social Services) what is on offer where your Mum lives. or what might be being built as we speak. The Government are heavy on enabling people to stay in their own homes for as long as possible now - but of course many with memory problems or confusion need a lot of support to do that. Some of the Sheltered Housing is to buy or 50:50 buy & rent or all rent. The key thing is there may be a lot more choice now. Not in rural areas so mcuh yet.

On the whole it often seems better for someone to stay in surroundings that are familiar - as learning their way around a new place can be difficult . But it is a case of priorities , you have to weigh everything up & decide the top priority & go for it.

There will be other people who can chip in with their opinion - Social Worker , CPN, GP - everyone will think they have the answer. Carers, like yourself , have so much contriibute - we are the only ones who knew the person before the illness & we have more time to help the person express their feelings , we dont have the pressures some of the professionals do - a budget for example , filling places etc etc

In my experience , in the early years & even later - it is not impossible to learn new things - it just takes longer & longer to learn as the illness progresses. It took Mum 6 months to 'learn' her dog had died - but in the end she told me that her dog had died - quite out of the blue - instead of "Wheres Holly " - that we'd had 100 times a day .

Do keep in touch & I'm sure lots of others will post here soon.
Take care.

Chris

 

[Brucie]

Hello Kay

so sorry to hear your news, but I like your style - good and positive.

From my experience, Chris is absolutely correct in saying take things slowly.

Talking Point is a great place to share experiences and to learn, but also try to keep your own eyes and ears - and feelings -open to her condition. It is all too easy to assume something is so because this or that happens. That may not be the case.

Frequently behaviour can change and we may just assume it is a progression in the condition. However [and this has happened in the case of my wife, Jan), it may also be caused by a reaction to a medication, or because she has a urinary infection that no-one noticed. Once the underlying cause is sorted, then her condition returned to what has become normal.

Remember that 'normal' will now be a moving target!

Each person with a dementia has a different past, and their present and future will also differ from others in the same boat. Who knows, you may observe/experience something that you have never seen mentioned on TP, and when you mention it, suddenly lots of people who have never posted any messages before will say "I've seen that with..."

We all bring our different stories from our caring.

Regarding a possible move from west to east, what was her reaction when she stayed with you? I'd suggest trying that for a week or two before deciding for her to up stakes. Yes, it will be a major trial for you - and for her - but it would give you more of an idea when you come to make a suggestion to her, perhaps?

My best wishes, and do use TP as much as you need!

 

[Linda M]

Hi there,

I am fairly new to all this as well but must repeat what is said above - do use this Talking Point to air your fears/concerns etc. I am in a kind of similar position in that my aunt has been diagnosed with early dementia but no nearby family. My mum came down from Scotland for a week to help my aunt settle back at home after month stay in hospital and found it very difficult. We all do really care but we are all so far away!

In my very limited experience on this journey, I would advise to ask lots of questions, especially the ones which people assume you know. So far (apart from a couple of incidents) I have found social services, day care and especially the community nurse, really helpful.

All the best and do keep putting your questions on TP - I have found everyone here is very friendly and offers good advice and makes you realise that lots of people in lots of different circumstances are having to deal with AD. That's a comfort in itself.

 

[Sheila]

Hi Kay, welcome to TP, I think the others have about covered it, but everyones journey will be slightly different depending on circumstances etc. You can only do your best to help your Mum, there are pros and cons whichever way you play it. You just have to do what you think is best for your family circumstances and take it Norm's way, (thats day by day) keep posting, it helps to share, love She. XX

 

[Kriss]

Hello Kay

does Mum have a circle of friends who may stick by her and visit? My Aunt wanted to stay where she is in the North West as she has lots of loyal friends who she has always socialised with. To date many stand by her and visit during the week. We only make it at weekends as we are 50 miles away in Shropshire.

It would have been easier for us if she was nearer but I'm not always sure she recognises us now, so all visitors are very welcome to break up the day.

Sure it's a long way to go in an emergency but now she has settled into a home we have the comfort of knowing she is in safe hands. No more midnight runs in response to worried phone calls from neighbours.

Every situation is different, so go with your gut feelings (one day at a time).

Good luck
Kriss

 

[Katy44]

Hi Kay,

How does your Mum's friend feel about this? Does she feel she can cope or not? Has your Mum expressed any opinions (or is part of her denial that she is fine and nothing needs to change?)

Just out of curiosity, where abouts in Co Durham are you? I'm in Esh Winning! (Don't answer if you'd rather not put that on a website).

 

[Norman]

Hi Kay
nothing I can really add to the good advice already given,it is day by day and tomorrow WILL be better.
If you wish to give any personal details to anyone you can send a PM,rather than post on open site.
best wishes
Norman

 

[Kay]

Thanks

Thank you all for your replies - i admit to being overwhelmed with the response.

I believe the doctors have suggested sheltered housing as a possibility but its difficult because at the moment Mum is saying there is nothing wrong with her so making any suggestions at all is met with Why - I'm perfectly all right where I am - there's nothing wrong. She doesn't entertain new ideas - we have talked in the past about her moving over to the North East closer to all of us and have had the answer - maybe in the spring - this has been the standard answer for some time now, while we don't want to move her unneccesarily causing her distress we cannot continue to put all the caring on her friend - its not fair. My Mum does not know that we have been financially supporting her friend to enable her to spend this time with Mum - I'm beginning to think this is a mistake but we just wanted to make sure she was safe and happy where she was.

When she stayed with me for a couple of days towards the end of the week she really wanted to go home where she feels safest, I believe, and has her friend there to look out for her. By the time my brother called to take her back home (which was a day early - telling her that she is going anywhere at all puts her into an immediate panic and giving her advance notice just upsets her and makes it impossible to get her to settle - she wants to go now not in a couple of minutes!! - this is obviously where I get my impatience from!!!)

My mother has spent a large part of her life caring for the elderly -first as a hospital social worker and then in a home for people with all forms of dementia so I believe she knows that she has a problem but won't admit it. It's ironic really, the best person to ask on how to deal with this is the one person that we can't because she is in complete denial.

I guess we will have to wait until the community nurses assessment - my eldest brother is doing most of the talking to the relevant people (going with her to the doctors for a memory test and such) Once we have her assessment we can make a more informed decision.

This was going to be a quick "thank you" email obviously I needed to talk more than I thought!!!

Many thanks for your offers of support and advice - it does help.

Kay

 

[Katy44]

It must be horrible to know that something is going very wrong with your memory and concentration. My Grandma cared for her mother, who also had dementia, and it was an incredibly stressful time for her (out of her 12 - I think - siblings, all the caring was left to her) and so she must have an idea of what is happening. I wish she would understand that we only want to help, but after a lifetime as an adult making decisions for herself it must be really upsetting to admit that she needs to rely increasingly on other people.

 

[Sheila]

Hi Kay, I suspect your Mum is very aware of what is happenning to her and that this is really hard for her to take having the knowledge she does of these things. My own Mum totally denied all, until she was ill with a chest infection, nothing to do with dementia. It was only then that I was able to step in and insist she no longer live alone. It is so difficult, we love them so much, we respect their wishes and right to independance, but we know they are getting to a stage when they are unsafe alone. If only there was a way of dealing with it that suited all, unfortunately there isn't and it's a case of waiting till you get a chance to help or they actually say they want help, it's a nightmare in a mine field! Wish I had a magic wand, thinking of you, love She. XX

 

[Norman]

Dear Katy
after 7 years my wife still does not accept that there is anything wrong.She admits to a bad memory.
She gets really angry about being "minded" when I go out and insists that she does her jobs and looks after things.
The truth is she does nothing now.
The going home is part of pattern,if we go out now, which isn't often she always wants to go home,in fact she wants to go home when we are home!!
best wishes
Norman

 

[Pat H]

Hello Katy
The community Nurse's assessment will be key so I so hope you get the support after that assessment to do whetever is best for your mum.

A really important thing that I've learned over my father's gradual descent into AD is that in the end whatever you do has to be right for you and yours. We are all in this for the long run, as one of most diffiult things with AD seems to be that sufferers so often have good physical health. When we were looking for Care Homes for Dad, we started looking in the place where he lived, so that his carer and his ageing friends could still call. However, this was 70 miles away from both me and my sister, and it was his carer who said that the most important criterion was that it worked for us first and above all else. It has been immensely difficult and continues to be so, and Dad did not want to go and is still struggling in after 3 months, but at least a) he's safe, b) everyone around him is safe from him and c) my sister and I can see him often, even though he has no memory of when we've been. You love your mum and ache for her, but if you are to be there for the duration, all decisions have to be right for you and your brother, first and most importantly.

TP helped me a lot when I had problems with Dad smoking in the care home, and it helps so much just to know that there are so many other people out there trying to cope with this too. You think you are absolutely on your own and then through TP you realise you aren't!

Good luck, keep that evident sense of humour.
Pat