more worried about dad!!

[fiitay]

My mum has been diagnosed with early onset alzheimers. She is 75 and started with memory loss about 5 years ago.
She lives with my Dad who is 74 and very fit and healthy. They only live a mile away from me and I'm an only child.
I 'mumsit' on a Sunday evening so he can go out and also take her out on a Thursday to give him a break.
She isn't that bad that she needs 24/7 care yet and can be left for a couple of hours a day without too much hassle (Dad writes down where he is going and what time he'll be back) although sometimes she forgets its written down!! Dad texts me to let me know where he is so if she rings me to ask where he is I can tell her.

The biggest problem at the moment is the 'repetitive strain injury on the brain' as I call it. She seems to get fixated on something and keeps asking the same question over and over again. I find it hard work and I know its not her fault and I try very hard to be patient but sometimes I get really wound up.

My real worry is for my Dad, my Sister-in-law has just lost her Mum from the disease but not before her Dad had a stroke, which has left him incapacitated. I don't want my Dad to end up like that!!

Friends are telling me to get help with carers now but I'm not sure Mum and Dad will accept that yet. Dad is quite good at burying his head in the sand and thinking we'll cross that bridge when we come to it but friends are saying we should get her used to it before she is too bad.

Can anyone give me a clue what to do please?
Thanks

 

[cheers27]

Dementia Notes /carers /day centres?

To stop constantly repeating the same thing again and again and again and again ...

I would write a brief answer on a post it and then pull it out for my mother to read.

This can:
(a) stop you losing your temper (which can happen).
(b) initially stop the broken record of the same question
(c) My Mom would often put this note safely away in her bag and then ask the question again. ;o)


You can then ask them a question - the trick is to get on to another idea.

Often the question is a safety question that they pull out when they are worried about something else. Sometimes changing the answer completely to the one you gave before can change the cycle. My cousins believed that their mother was asking the same question until she got the answer she wanted. This can be true.

In the part of your thread where you ask about getting help for your Dad, then I would start to look earlier rather than later. A few hours respite that you know you are going to get can be a great relief. However good luck with finding good carers. That is a whole giant story all by itself.

Have you considered sending your mother to a Day Centre? They vary a lot, so you should check out more than one. If they are run by the council they will be means tested at some stage (a nightmare), I believe if they are run by Age Concern it is about need, not profit.
To find out local day centres check your council AND age concern. The council often neglect to mention they exist.
Tip: check them out yourself first. Then when you have a possible match, take your mother (and father) to visit (and maybe stay somewhere in the vicinity). Don't ask your mother if she would like to go to a Day Centre - if she was like my mother then you will get the 'No's' in answer to any direct question. It doesn't mean yes or no.
I hope this helps. Good luck.

My mum has been diagnosed with early onset alzheimers. She is 75 and started with memory loss about 5 years ago.
She lives with my Dad who is 74 and very fit and healthy. They only live a mile away from me and I'm an only child.
I 'mumsit' on a Sunday evening so he can go out and also take her out on a Thursday to give him a break.
She isn't that bad that she needs 24/7 care yet and can be left for a couple of hours a day without too much hassle (Dad writes down where he is going and what time he'll be back) although sometimes she forgets its written down!! Dad texts me to let me know where he is so if she rings me to ask where he is I can tell her.

The biggest problem at the moment is the 'repetitive strain injury on the brain' as I call it. She seems to get fixated on something and keeps asking the same question over and over again. I find it hard work and I know its not her fault and I try very hard to be patient but sometimes I get really wound up.

My real worry is for my Dad, my Sister-in-law has just lost her Mum from the disease but not before her Dad had a stroke, which has left him incapacitated. I don't want my Dad to end up like that!!

Friends are telling me to get help with carers now but I'm not sure Mum and Dad will accept that yet. Dad is quite good at burying his head in the sand and thinking we'll cross that bridge when we come to it but friends are saying we should get her used to it before she is too bad.

Can anyone give me a clue what to do please?
Thanks

 

[Jancis]

Hello fiitay,
Welcome to the forum and sorry to hear you are so worried. My mum resisted having carers to help her look after my dad. His illness progressed very slowly and I don't think she noticed the changes and how the pressure on her grew over several years. It may be hard to convince your dad that he needs extra help especially as he gains help from you too, it's natural to put off postponing life changing decisions.

Don't ask your mother if she would like to go to a Day Centre - if she was like my mother then you will get the 'No's' in answer to any direct question. It doesn't mean yes or no.

Cheers27 has highlighted a problem I encountered with my uncle regarding asking direct questions. My uncle would always answer "No" to any direct question.... and we came to realise that it didn't necessarily mean No or indeed Yes.

My brother and sister-in-law look after their mum and yesterday they took her out in a wheelchair for the first time. She was adamant that she didn't want to be pushed around in the chair but after a while she seemed to really enjoy it. And they were so surprised they enjoyed the outing too. It's very difficult to know what to do in the best interests of everyone isn't it. Good luck and hope to see you around on the forum.

 

[fiitay]

feeling calmer!!

Thanks very much for the replies. We have an alzheimers drop in centre near to us every fortnight which I'm gonna talk to Dad about and hopefully take Mum to.

They are going to America for a month on Monday which they do twice a year and have for the last 10 or so. I'm a bit concerned rather than worried how Dad is gonna cope with her 24/7 although not quite as much as I was!!

We have been to a family wedding in Liverpool for a couple of days along with my 22 year old daughter and her boyfriend. On the way back we decided to go to the Albert Docks for a couple of hours.
Mum went of to the toilet while we all waited for her. She was quite a while so I went to find her and was distraught when she wasn't there!! I went back to the family and told them Mum was gone.
We all went into panic mode and while I stayed where I was in case she came back, the rest went running round looking for her!! Dad came back to me after 5 minutes so I told him to stand guard.
I went upstairs and theres Mum waiting by the entrance totally calm. She had gone to the reception desk at the museum and put a call out for us (which we didn't hear as we were in the basement) and just sat by the entrance as she knew at some point we would have to go past there to get out.
We were all having kittens and she was much calmer than she would have been before she got this horrible disease lol.

I reckon there is someone up there looking after all of us!!

 

[FifiMo]

Sorry to read about your mum getting lost! Can I suggest a fabulous tool that I have just bought for my mother for the very reason that you have just encountered. They are and ID bracelet which you can write on and can put, say, your mums name on it, dementia, and your mobile phone number. they are reusable so you can change the information depending who is with her at the time. Here they are here: http://www.labels4kids.com/product/65/infoflex_slappit_reflective_wristband. They have different types and are a cheap way of perhaps having some peace of mind when you're out.

Fiona

 

[fiitay]

Hi Fiona,
What a fantastic idea!! I am gonna order some right now its just a shame they wont be here before their holiday, although maybe Dad could but a piece of paper in her pocket with their room number on and his mobile number.
Thanks so much for the idea.

Fiona too lol