A right mixed bag

[susiesue]

I'm amazed how many people are experiencing language difficulties -- for a long time I was virtually the only person on the forum experiencing those symptoms.

Helen, I keep meaning to ask you whether John has set sayings with his PPA. David keeps saying the same little sayings such as 'that's it' or 'it's the best you can get' etc

I just wondered whether this was a part of PPA - also he always confuses he with she.

Hope you are feeling better this morning - and hope it's lovely and sunny where you are as it is here!

Love

 

[Helen33]

Dear Sue and Hazel

Dear Sue, I find the great thing about TP is that I can let out the real thoughts and feelings and not have to deal with the reaction of the recipient(s). I can log on and off to suit. I can listen to response(s) to suit. It is a very unique situation which really does just fit my situation. One cannot behave like this non-virtually because it would be very rude and anti-social. I find it difficult to adequately describe but I do know that it works for me.

I HAVE PICKED MYSELF UP, DUSTED MYSELF DOWN AND AM READY TO START THE NEW DAY.

Dear Hazel, I am sorry to hear that you are feeling low too I haven't been using TP as much for the last week or so because of the changes so I will catch up and see what's happening with you and John. The last I read was that you had returned from the endoscopy and, hopefully, were resting. I do have Crossroads daily and cannot imagine life without them because they are actually proving to be very therapeutic for Alan. I know it doesn't sound like it because of the downturn in Alan but I suspect the downturn(s) would happen anyway. One of the sitters particularly has the ability to enable Alan to feel very positive about himself and he is a lot more calm and relaxed when he is around. He is a lot calmer when any of them are around. None of them have experienced what I have with Alan and I think they would be very surprised to see him in such a state. I'm just wondering, as I'm typing, whether he is having separation anxiety which would explain why he has been so frightened and clingy to me? I'll ponder that one. It could be because they give him 100% attention and he responds extremely well to it. I have to use the time for work Hazel otherwise I would have to stop work which wouldn't be good. I run a skeletal service as it is now. Alan cannot cope with clients coming in (particularly male clients) so he needs a sitter to distract him from the voices. I do appreciate though to idea of other stimuli and I think your suggestion has come at just the right time I will look into the possibilities. Thank you.

Love

 

[Helen33]

Hello Sue

I keep meaning to ask you whether John has set sayings with his PPA. David keeps saying the same little sayings such as 'that's it' or 'it's the best you can get' etc

I just wondered whether this was a part of PPA - also he always confuses he with she.

Sue, actually now that you mention it, he does! He always confuses he with she and has done for a long time now. He also keeps saying something like "it's a shame" inappropriately. I can be enjoying doing something and he will come out with "it's a shame". I used to think that he was putting a dampener on everything because he is naturally pessimistic and I am naturally optimistic. I never thought of it as part of the disease's progression. All these things help me to not take it so personally. Thank you.

It was lovely and sunny here. I hope you have a decent day Sue and will catch up later.

Love

 

[Margarita]

That`s the trouble.
We can only make friends with those in similar situations. People who won`t be offended if you cut short a phone call. People who won`t think us odd if we cannot make arrangements to meet. People who have little to talk about other than dementia.
Thjat`s why we all get on so well on TP.

That is how my life is now , this is such good thread to read.

I think we all feel the same - That is what is so wonderful about TP - we can show our feelings on here and know that we are not freaks!

I feel like a freak sometimes .
because I am looking after my mother, while with you all its husband wifes.

people can't believe how my life is wrap around my mother , compared to how one does when caring for a husband or wife.

Sometime I feel on the outside looking in , as I read on TP.

I can relate to so much of sad nell posts Just now mum mobility not so good .

I am just glad to read the truth other people share the same symptoms, its not just my mother .

when TP was not around in my life mum was having those symptoms, I don't know how I cope with the isolation, but like Helen says you do just cope.

Isolation still the same now , I can't leave mum alone for more then 20 Min if I go out , 3 days of snow means no one being around to give me time out, seem like I am back to Sq one . At lest now I have the TP

 

[susiesue]

Hi Helen and Hazel

Sorry Helen got your husband's name wrong I think. I think I should have said 'Hazel' as I know her husband John has PPA.

Anyway, glad you answered and I do believe it is part of the disease (PPA)- I have looked on the Speakability website which does mention the he/she thing - don't know whether you have looked there yet but it is quite interesting.

Margarita - you aren't a freak because it is your mother you are caring for - actually I find it very strange looking after my husband as if he's a child - he has always looked after me and it is now total roll reversal - c'est la vie! I suppose.....

 

[Helen33]

Hello Maggie and Sue

Maggie I am so sorry to read that you feel as if you are on the outside looking in on TP. I've always seen you as a very solid part of TP - very much on the inside I feel like your mother is on the inside too and very much a part of the TP family I cannot imagine TP without you both. I never thought that some of you will have experienced life as carers without TP I cannot even go there - the thought is unbearable. I think I would become really ill without an outlet and significant connection with you all.

Sue I have never heard of a Speakability website and will have a look. Thanks. Don't worry about getting the name wrong - it happens

Love

 

[Margarita]

c'est la vie! I suppose.....

Your right there .

Now am thinking that I should not even be leaving mum alone for 20 Min, as I am putting her at risk but then how to I get out if I need something .

Am at the Mercy of other people .

I don’t think I could believe back then that my mother would get to a stage like that at the age of 79, not being able to be left alone .

what I find that people can’t comprehend what dementia is. Now mum Old in age had her life, I need to get on with my life. I better stop, too much time on my hands to think.


PS


My life line to the outside world arrived , day centre bus arrived we got mum into the bus safely as they was still Ice left outside .

 

[susiesue]

Margarita

I cannot imagine how awful it is for you not being able to leave your mother for any amount of time - I suppose I am fortunate as I have not yet reached that stage with my husband - but presumably it will happen eventually.

Thinking about it, it is also role reversal for you too looking after your mother - do you have brothers or sisters who can help you? Thank goodness you get a break when she goes to the Day Centre.

You are right - unless you have experienced Dementia you cannot imagine what it is like - I must admit before it happened to us I had never really given it a second thought - I certainly didn't expect it to happen to my husband when he was 65!
Love

 

[sad nell]

Glad its another day and we are not exactly dancing in the isles but feel a little happier today as i feel you do, Understand the effect that kindness has on you, I can be a tough cookie if any one hurts my family, but a kind word about trev can have me in floods of tears. so glad alan is enjoying his visits from crossroadsi also think it is the 100% focus on them that works rather like a toddler being centre of someones world for while and who can blame them, but i also cannot no will not do that, i have to work for my own sanity and to support us both, savings vanishing at rapid rate. Hazel , Sylvia and maggie all seem to ha.e had a similar down day yesterday, lets hope today is better..Love to all Pam

 

[Grannie G]

I have logged on late this morning and saw on this Thread alone, I had 10 posts to read since last night.

Reading them was wonderful.

As I had had no imput, I was quite objective, and it gave me such a warm feeling to see the mutual support and understanding.

It sounds as if you are all feeling a bit better today, or at least trying to feel a bit better.

I am too.

Love xx

 

[Skye]

Sorry Helen got your husband's name wrong I think. I think I should have said 'Hazel' as I know her husband John has PPA.

Hi Sue

Yes, John did confuse he and she, and come out with inappropriate remarks. I think that's because they desperately want to communicate, but can't think what to say, so come out with stock remembered phrases.

Sadly, even that's gone now for John. Most of the time he doesn't talk at all, the odd yes or no causes great excitement. But I do think he still understands quite a lot.

Glad everyone's feeling better today!

 

[heartbroken]

It sounds as if Alan`s son really couldn`t handle the emotion and upset.

I so agree, I find my son changes the subject when I talk about Edna to him he can't handle illness.

Helen please please don't feel alone, I think of you lots
I am going to email you please look for it as I need to say somthing that I can't here

sending you a very very big hug
hope today is better

 

[gigi]

Dear Helen.....

I was in the middle of a reply to your thread yesterday when my daughter phoned...so I never got back to you...sorry.

The kindness, understanding and support from fellow TPers never ceases to amaze me..and you are one of those who has given me all of those things.

Whatever I was going to say yesterday has gone....

But overall I well understand the feeling of isolation and lack of conversation.

Eric can still talk..but has lost a lot of words and his conversations revolve round whatever is in his mind...and sad to say there's not much there anymore...it's all very predictable.

And all I seem to want to talk about is AD...(or drug addiction..)

This is because these things are dominating my life just now. As Alan is yours.

But you are a caring, intelligent woman..you'll never lose that.

You are using your skills to deal with everyday life with Alan....and doing it well.

But like all of us we have wobbly days...or hours..and as you've said yourself...TP comes into its own then.

I do hope today has been better for you...

love gigi xx

 

[living in hope]

Hi All
Just read all the threads, so much of it struct a chord with me, the he/she and only able to say stock phrases, if i hear isnt it cold once more i shall scream. I am also still working and dont think I could cope at home all the time, trying daycare for Brian after our holiday (we go to florida with the family next friday for two weeks), if he wont go to daycare I dont know what i'll do, lady from ss said they dont supply sitters so not sure what other options are available to me. I'm quite cheerful at the moment but know tomorrow i could be down, I get so much from reading all the posts that I try not to let a day go by without logging on to TP.
Love to you all
Lorraine

 

[Helen33]

Thank you

Florida I hope you will be taking your digital camera and treating sticky pics to some photos of sunshine and warmth
I hope you have a wonderful time and a good break with the support from other members of the family.

Gigi, thank you

Everyone has helped so much that it has enabled me to have a much better day. Alan isn't much different but I am coping with it better. I must say though that Alan was really happy when the sitter came(a male who Alan really responds to). Mind you this man is particularly good. It is quite incredible to witness him interacting with Alan He has a natural ability to be able to leave Alan feeling good about himself. I think this is possible when one can give 100% positive attention which I cannot do. Tonight Alan said he was tired and I told him to get into bed. This was 8 p.m. which is unheard of. However, he seems at ease and comfortable in bed rather than agitated, anxious and afraid.

Once again, thank you all so much and will log in again tomorrow to see how you are all doing.

Love

 

[Grannie G]

Dear Helen

It`s so good to hear of your better day. This is how it seems to be for so many of us. A really bad down in the dumps day, when we feel it can`t get any worse, and from there we can only go back to a more manageable day.

The only consolation is we are in good company.

Love xx

 

[Margaret W]

Dear all

This thread is one of the most upsetting and at the same time uplifting of all that I have read in recent months. A bunch of carers all with sad problems (sometimes in the pits of despair), all determined to solve them, and all doing so, with different degrees of success of course. It has made me proud to know you all. The world (government?) doesn't have a clue what you all do with your own resources.

You are all stars. Your loved ones are very lucky to have such wonderful people working hard for them.

Love to you all,

Margaret

 

[living in hope]

Thanks Helen
I'm sure we will have a great time in Florida, I think its all thats keeping me going at the moment, although i am continually worrying that Brian will get even worst and we wont be able to go (or he will say he dosent want to go) once we are on the plane I will relax and concentrate on us all having a brill time and worry about day care, physciatrist, CPN, and SS when i'm on the plane coming home!
Love
Lorraine