A Frank And Open Message:

[cris]

respect for people

Sylvia, you just posted a line about "respect for people with dementia". I agree with you but i will deviate, partly to "get this of my chest" i supose. A great aunt of mine, who i did not see very much, but always sent xmas cards and thro my mum knew how each was "doing", has just died. She was 86, her daughter lived half mile away, (her son in south africa), her daughter was due to go to her at xmas, did not bother, did not let her even know she was partying instead. Chicken cooked etc the women spent xmas on her own. She had a fall, ended in hospital, caught pneumonia, was in hosipital about 4 weeks. My mum went and saw her, she was asking for her daughter, who new her condition and where she was, but the daughter did not bother to go. Now she is dead, the son has flown home and the daughter is there, and they are both waiting for the flat to be sold so they can have the spoils. Her children never bothered with her in life. What i am trying to get to, is that there are some people who have no respect for others whatever their condition.
cris

 

[Norman]

too busy lately to get involved with messages in detail, but just to say this vile illness has totally wrecked the lives of the wife & me. we have no future .,few friends & a rapidly disappearing family .After over 3 years of absolute hell things are still worsening ; we are sliding towards obscurity . who else cares ? - to be honest ; nobody ! I may sound paranoic , but having been in psycho-geriatric nursing for many years this disease means victims and carers are virtually rejected by society . the term " lip service " springs to mind . in my case there is no cut-off point ' apart from the inevitable one . Sorry to be so verbiose ; best wishes to all of you. the battle goes on !! logging off for a few months

Hi bebee
How I can relate to your post,I have written similar ones in the past.Yours says it all.
I think the bottom line is that whatever help is gained from SS or elsewhere it does not bring back what we really want.
Our life back with our dearly beloved.
I don't want a new life.
I have said before even when I get time off,what do I want to do?
I feel like a lost soul,because this horrible disease has cut me in half,I no longer have the ability to enjoy life without my Peg.How can you mend a broken heart?
I am feeling very tired these days ,after some 11 +years of caring,the reason that my posts are less these days,I want to avoid posting as a moaner, which is of no help to anyone.
Practise what I preach "day by Day"will post where I think I can be useful
Norman

 

[Skye]

Dear Norman

You are not a moaner. I feel as you do, to a lesser extent, because John is not as far advanced as your Peg.

What you are suffering we all have to face in the future. Please keep posting. We really do care about you.

Love and hugs,

 

[Margarita]

Norman You’ve never come across to me as a moaner since I have been on TP for the last year , just someone that is facing reality and being realistic

 

[yvonne j]

solutions

I have just been reading the various messages, and my heart aches. My stress at watching my dad wanting to go home, is over. He did some incredible things in his home including breaking into the home from the garden to get out and go home. The disease is one I knew little of until my dad suffered with it. Years ago I have to admit, that on hearing patients in hos[ital repeating the same thing over and over, I just did not understand. What I have seen during my dad's illness is that hospital staff do not understand, either they are under trained to cope or they can not be bothered, or the wards are understaffed. In the same way there are Mac Millan Nurses for cancer I really believe there is a need for Alzheimer nurses, to help families to cope, to get in the appropriate care, and they should be emploed in all hospitals to help staff understand and teach them how to cope, that way maybe no other patient would ever again be tied down as my dad was.

 

[alfjess]

Hi Yvonnej

What a good idea.

Are CPN's employed in ordinary hospitals or are they just in the community? If not they should be and specially dementia trained ones at that

It was horrible what happened to your Dad

Take care of yourself

Alfjess

 

[Skye]

Dear Yvonne

You're obviously suffering greatly from the loss of your Mum an Dad. It's so sad that you lost them both in such a short time.

Add to that the distress of feeling that your Dad was ill-treated. It's going to take time for you to come to terms with it.

Have you sen your GP? He might be able to arrange some counselling for you.

In the meantime, perhaps you would like to start a new thread in the After dementia - dealing with loss forum? More people woul see it there, and you would get more support.

Take care, and keep in touch.

Love,

 

[Amy]

Dearest Norman,
You certainly are not a moaner . Norman you have given so many people so much support during your time on TP - never be afraid to post when you are struggling- let us return a little of what you have given. I for one would rather see you here, sharing your concerns, than not see you at all and be worried as to how you are doing.

I don't need to tell you this Norman - you know as well as I do that TP is both for GIVING and RECEIVING support - and in case you have forgotten, that applies to volunteer moderators as well.

Take care.
Much love, Helen

 

[Brucie]

Hey Norman,

Sometimes I think we learn more from what someone else considers 'a moan' than we can from anything else.

We learn we are not alone in wanting to moan, we learn that even the best of us - that's you, Norman - needs to let it all out on occasion.

Your posts since you signed up for TP have shown huge strength and love and patience, and willingness to help others.

Why leave the rest of us to moan on our own - go on, join us.

 

[Margarita]

I don’t know if I should be saying this , but am going to say it .

I have learn a lot from a man point of view, perception from living with someone who has AZ from Norman , Bruce and a few other men on TP .

 

[Tina]

Dear Norman,
I have always read your posts with respect and admiration for the way you are coping and caring, giving to others and letting them benefit from your experiences, and I still do. You're not a moaner. Post when you need to, moan, share, talk, and be sure your friends will respond.
Take good care,
Tina

 

[Nell]

One of the things that makes me feel the guiltiest is the thought "how long will this go on?" I truly love my Mum, and I wish for all our sakes that she was not afflicted by this dreadful disease. I try to do everything I possibly can for her, and like all of you, I often wonder if it is enough, or the right thing, or could I be doing something more, or better . . . .???

Mum is 84 years old, and apart from the AZ, in the best of health. When I read of people on TP who are caring for people after 10, 12 or 15 years, I feel very anxious about how long my Mum will need me to be involved in her care. I cannot imagine coping like this for another 10 to 15 years - and yet I have it easy compared to so many of you.

That dreaded "guilt monster" really has a grip on me about this. I would never want my Mum to die - but I can't come to grips with putting my own life on hold as it were for a very long time either. Thank you Connie, for making it "OK" to talk about this aspect of caring. Nell

 

[yvonne j]

Dear Hazel, i dont feel the need for a gp only a friendly group to share experiences with. Nor do I wish to join or start a new thread, if you prefer me not to post here I will cease to do so. This thread has helped me a great deal, I appreciate the caring thoughts from contributors, thank you. I recognise so much of what people are asking. Guilt should have no part in this, tho' I too felt it, but as I experience some distance of time I can see more clearly that I could not have done more, that each of us has to do what is right for us. That may be looking after our loved one at home or in a home. What use can we be if we make ourselves ill, or become frustrated and angry, that leaves a gap for our loved one. It is maybe better to do what is within our ability without destroying ourself. It is help from outside that should be more readily available, but sadly is not. Unless you experience this disease, it and its effects are generally understated. Asking the GP for a CPN was useful to my family, I wish I had asked earlier, a CPN can be supportive. Home care, up to four times a day is also useful, but there comes a time when it is not enough, when a home may be the best choice. Keeping in touch each day by telephone and regular visits helped me to see that dad was in a good caring environment. I looked far and wide before choosing a home for dad which I felt was right for him, it had a dog and a cat, the staff spoke welsh.... my phone calls let staff know I was concerned on a daily basis with Dad's welfare. Do what is right for you and for your loved one. Then there are no regrets or anger at how it should have been.

 

[Skye]

Dear Hazel, i dont feel the need for a gp only a friendly group to share experiences with. Nor do I wish to join or start a new thread, if you prefer me not to post here I will cease to do so. This thread has helped me a great deal, I appreciate the caring thoughts from contributors, thank you. .

Dear Yvonne

I seem to have upset you, and I didn't mean to.

I am happy to accept that you don't need to see a GP. It was only a suggestion, as are all the the posts on TP. We are none of us experts, we can only make suggestions based on our own experience and what we have learned here.

As for where you post, again it was only a suggestion. I'm glad the thread has helped you, and I hope you will continue to post wherever you like.

I suggested you start a new thread because that way your post would have been read by more people and would get more answers. However, if that is not what you want, that's OK too.

Please accept my apologies for any offence, and please continue to post, wherever you like.

Love,

 

[yvonne j]

Dear Hazel
its fine, thanks for your help, the truth is I am vulnerable and touchy at present, if I over reacted I hope you will understand. I have been reading other threads and have learnt much, I didnt understand why dad had lost his swallow reflex, now I do. I hope and believe I can help support others here.
yvonne

 

[Skye]

Hi Yvonne

Thanks for the message. I'm afraid we're all vulnerable here, and it's so easy to hit a nerve.

I'm so glad you're finding TP helpful, it's a lifeline for me.

Keep in touch,

Love,

 

[Lonestray]

Connie, you echo my sentements, the younger ones can not understand the thinking of us older ones (76 this year). Only yesterday I was telling our daughter I would not wish anyone of our children or G'children to lose out on life. Though we rearly see any of ours I keep up to date on how each of them are doing. In explaining the caring roll I feel one must want to do it out of a deep tangible love, and not from a sense of duty, the patient will sense it, and wish the carer/loved one to enjoy a full life. They do not need to added worry of unhappy kin.

It may be we see littke of our G'children because they remember the family home
where they spent so many happy days, this place is not the same. It also gives them the chance to drift quietly on in time, while still retaining happy memories of their Nan, in other words 'the slow but gentle goodbye'. As for how long will it last? So far I've been blessed with the extra years, and as a result I sleep sound every night, and should the next day arrive it's a bonus.

I steer this flimsy craft along the sea of time, through whatever storms we encounter along the way, with the ever present mist and fog of Alzheimer's for company. All of us will sink some day, only God knows when, till then I'll endevour to steer to the best of my ability.
May you be granted calm water on your sea on time. Padraig