Glad to know I'm not alone

[Rob Hutchcox]

...Being very new to these types of forums, I would just like to say hi to everyone out there, and hope that if I can be of any comfort and support to other carers in a similar situation to mine then.....I am at you service, equally, you can be certain that any messages of advice or assisstance you can send me from time to time will be gladly received and replied to.....

Many thanks in anticipation

Rob...

 

[Grannie G]

Hello Rob

Welcome to Talking Point. [TP]

I see from your Profile you have both a personal and professional interest in dementia. Has it been very difficult for you to wear different `hats`, or did it help having had previous experience?

Regards

 

[Helen33]

Hello Rob

Welcome to Talking Point. Because you said you were new to these forums I thought I would highlight the fact that Talking Point is like an open forum. Although there is a private messaging part of the forum I think one would need to be known before it could be of any benefit.

I think that to gain the greatest benefit from a forum such as TP you could either:

1) Read through some of the threads and respond if you want.

2) Open a new thread telling us something about yourself or your situation.

3) Take advantage of the fact sheets available.

I hope you find TP to be supportive and look forward to seeing you around on here.

Love

 

[Rob Hutchcox]

Rob Hutchcox

Welcome to Talking Point. [TP]

I see from your Profile you have both a personal and professional interest in dementia. Has it been very difficult for you to wear different `hats`, or did it help having had previous experience?

Regards

Hi,

Yes, I think having dealings with dementia over quite a number of years has indeed had its benefits with regards to me being understanding and more tollerant when mum asks the same questions over and over again, and I do honestly believe what gets me through is my remaining calm and realising that this is the dementia thats manifesting itself and forcing mum to repeat, not her.....
I think also over the years, of having clients families coming into my office and wanting to talk about dementia and the effect its having on their mums and dads has given me a good grounding to where I am at this present time with mum.

Five years ago mum was playing a high standard of badminton, and could score her game without fault and, so it would appear, everyone elses games on the other three courts at the same time, thats how good her memory and concentration was, and it's at times like this in my mind, during her 'repetative questioning' that I refer to and recall, when she asks me for the 37th million time...'am I going to my club tomorrow'......she's not doing it for anything other that she's genuinely, in the space of two or three minutes forgotten the reply I'd previously given her, and for that, as mentioned,tolerance, alongside patience, humour,and calmness has to be displayed on my part.

Don't get me wrong, there are times [ thankfully not many ] when I do have to just 'walk away' from the situation of mum's repetitivness and retreat into my bedroom just to gather thoughts and regain strength in order to start again...but, on the whole, yes, my training with dementia, and working with others who have it, has indeed given me good insite to at least put some kind of perspective on whats happening and how to deal with it in the correct manner....
Nice to hear from you, and, thanks for your correspondence...

Rob

 

[Taffy]

Hi Rob,

Welcome to TP, I hope that you find support here and that your own support will be appreciated.

Regards, Taffy.

 

[robertjohnmills]

A good choice

Dear Rob
Welcome and hope you find what you are looking for here. I only joined myself a week or so ago (should have done it years ago)and have already found the warmth of other members overwhelming. To chat with others who can really empathise what it's like to live in this twilight world of Caring for a loved one with Dementia, is such a breath of fresh air, as opposed to having the sympathetic smiles of well meaning friends. All the best to you and your Mum

 

[Georgina N]

Welcome

Dear Rob,

I can echo what the others say. Although I only joined a couple of weeks ago, this forum has helped me so much. People who do not have an understanding of dementia simply cannot empathise in the same way as someone who is in the same situation as you.

You will make genuine friends here as I have found.

It is literally a life saver!

Love,


Georgina xx

 

[Rob Hutchcox]

...WOW...!!!

What a nice lot of people you guys are. Thank you so so much for the comments of support that I've already received, and after only one day.... and enabling me to see that there are a lot of carers out there who ARE in s similar situation...

Mum now constantly appears to follows the pattern at this time, by attempting to convince me, [ and at times, she is extremely convincing ] that there really is no need to have any worries or concers about her state of health, and although she conceeds that her short term memory recall is indeed not as good as it should be.......... [ I think I would estimate it to be at this time down to about 3 minutes ] I should'nt worry as I am more than capeable of looking after myself, so,.....you go off and live with...??? Julie,or Sue, or Angela....[my partners actually called Carolyn ] or, what ever her name is, and you'll see I'm more that able to do everything here, goodness me, I've lived on my own for all these years now and survived etc..etc....

And this is what I hear every single day now, and I'm sure, ney, in fact certain, that I am not alone.....I cannot at this time possibly even think of going off to live with Caz, due to having no confidence in mum's ability to survive 1 week by herself let alone the next few years, so.....I stay with her.

I feel a little like someone writing to one of these agony aunts for advice, but I have to say, getting this down in type and sharing it with others....well, just helps enormously...

At the start of me living with mum I was able, and indeed encouraged to stay at least three, maybe four nights a week with Caz....now, with everything going on, its down to just a single saturday night and back home Sunday afternoon, not even 24hours.....Caz bless her, has a wonderful relationship with mum and is a complete and utter source of support to me at this time....and, during our two years together she has only ever encouraged me to help and assist mum and put not even a hint of pressure on me to leave her...........but, and I would really like to know what you guys out there feel about this....I want a life to, I want my relationship to blossom and move forward and not just get to see the person I love for only 20 hours a week...

Yes, I love and adore my mum without question....yes, I would do anything within my power to have her restored to how she was 30 years ago...yes, I would give anything to have dad [ he died in 1987 ] back living with mum and being the happy couple that I always remembered them as.....and above yes,I do worry that to continue in this current climate, I may one day, turn around to find everything, gone.....

This communication is not a woe is me, neither is this a cry for help, or even a 'hey everyone, look at me and the obviously fab job I'm doing here with my mum......far from it....this is a genuine correspondance to ask people for honest advice, who I believe may well be in the same boat, how they've coped, did they feel frustrated, did they feel any resentment at all, or did they just resign themselves to the fact that this was thier choosen path, and they would follow it......whatever.....

Again, to those of you who do read this, my grateful thanks, and, sorry if I've gone on a bit of a waffly ramble, but, as I said earlier, its done me good to sit here and get it written down....which is something perhaps I should have done a long time ago...

Rob...

 

[jenniferpa]

Rob - I chose not to live with and take care of my mother. There were a number of reasons for that, the primary ones being that it wasn't feasible for me to get health insurance for her over here (I live in the US she was in the UK) and if I moved back to the UK that would have effectively meant I was abandoning my family and husband. Not really tenable. Which is not to say I didn't consider it - possibly spending a month here and a month there (I know someone who does that "in reverse: - her parents are in the US but she lives in the UK) but I couldn't swing it. Frankly, I'm not sure I would have been temperamentally suited.

Anyway, my mother often, often used to say to me "I do hope you have a life other than this" and she was always reassured when I said yes. I do think that even with dementia people can show empathy, even if only in flashes, and that's what I think your mother is doing here - she knows it's only right that you should have a life. Assuming (and I'm not saying it would be a good idea anyway) that Carolyn isn't in a position to move in with you and your mother, have you considered another option - extra-care housing (aka very sheltered)? My mother was in a facility not far from you where she was very well taken care of, and which was in the grounds of a nursing home so that when the time came her move was pretty seamless. Not all of them will take people with AD, particularly if they are still mobile though.

 

[Norman]

Hi Rob
I finished my 13 years of caring for my wife in 2007.
I joined a while back, and as you say it helps to put problems down on "paper".It certainly helped me.
I am still here, trying to help others and give them the benefit of my long experience on my dementia journey.
There are people on this forum ( as you have already discovered) who are only too pleased to give help,support and advice to others.
TP is like a big family really.
It sounds as though you are coping well,but can't you get some help that you may have some time for your own life?
Talk soon
Norman

 

[Skye]

can't you get some help that you may have some time for your own life?

Hi Rob

I have to agree with Norman. However accommodating Carolyn is, you're putting pressure on your relationship.

You have a right to a life, Rob. Youi have your future to consider, and your mum wouldn't want you to jeopardise that. Of course you love your mum, you wouldn't be in that position if you didn't. BUT...

....I want a life to, I want my relationship to blossom and move forward and not just get to see the person I love for only 20 hours a week...

You have a right to that, Rob. Your mum and dad had a good marriage, and I'm sure they would want you to have the same.

Please talk to your SW and see if something can be arranged. Ask for a carers' assessment, and take it from there.

love and best wishes,

 

[littlelins]

As a mother of two young boys, with a full time job and a boyfriend to keep happy, I know I cannot be everything to everyone all of the time. So, I rely upon carers to see to as many of my dad's day to day needs as I can and try to do only what I must, so that I enjoy the time with him and don't just find myself feeling swamped and resentful.

Don't get me wrong, it's difficult - I want to be the one doing everything - I'm a control-freak, it's difficult to give that up, but my kids, I have learnt off here, need to be the priority - they are the future. Not just that, but if I make myself ill, I'm no use to my dad.

So, my advice would be get all the help you can from social services and distance yourself from the humdrum aspects of care -can you pay for cleaning, feeding, etc from attendance allowance and instead just enjoy your time with your girlfriend and with your mum. Not easy I do realise - I haven't quite sussed it myself and am having counselling trying to make sense of it all! But I do believe you need to invest in your own future, make yourself happy - which doesn't have to be at the expense of mum's happiness - because one day she'll be gone and then what?

 

[Margarita]

I want a life to, I want my relationship to blossom and move forward and not just get to see the person I love for only 20 hours a week...

Think of it like this, Life is not a dress rehearsal, you only get one go at living this life on planet earth.

So the choice is your really , unless you let guilt get in the way .

I am a single woman now with 4 grown up children. I look after my mother in our home, since my relationship of 19 years broke up, 6 half years ago.

6 years now looking after my mother I never meet anyone that I could say I really feel "in Love with" that I would want to live with full time under the same roof .


Then I think that if I meet a man that I fall in Love with and he felt the same. Why would I have to give up looking after my mother at home with me for the both of us to be together?
He could live at my place even while I am looking after my mother .

May be I am asking to much of a man , that why I am still on my own

 

[Margaret W]

Margarita, if you meet a man and fall in love with him, he will be one very lucky man indeed to find a woman so loving and caring about her family as you are - and I don't mean that to be soppy or condescending, it is just how you are.

Love

Margaret