Please don't throw me away, breaking my promise

[kindred]

Hi there,
Have just joined this forum after a tough day with my OH who is 18 years my senior and has Parkinson’s and now mild dementia. Am acutely aware that I/ we are at the beginning of what could turn out to be a long and tough journey ( “ adventure”?) on a road that is well trodden by all those ahead of us, but I take courage and inspiration from reading posts such as yours which describe the ongoing love affair between you and your OH despite such v changed circumstances...so moving and beautiful.
I have dropped from full time work in a Camhs team , to two days, but even that after disturbed nights is proving hard , esp with colleagues being the source of additional stress. We are not at the care home crossroads yet though a very supportive neighbour regularly reminds me that it is an option and that there is no shame going down that path. In my darker sadder moments I do think that care staff in a good carehome would offer better care than I do when I am tired and stressed and upset at how I am being treated, And would provide much needed stimulation..but as I say we are not at that point yet. As a former and very skilled artist, I arranged someone to come to engage with my husband in some creative activity,( and company) but after only two sessions his response was that he felt patronised by my having set it up and did not want it to continue.
I find it a lonely existence, not because I am alone ( as a natural introvert I don’t get as much time to be on my own as I would like) but because my husband and lover is no longer the man I have been in love with and who I would have turned to for support, comfort and wise counsel in times of difficulty, but who I can can no longer do so with. I try every day, all the time , to accept and appreciate what we have now rather than regret the absence of what could have been, but it is hard.
I take comfort from knowing that others share the same feelings and experiences...which is why such forums as this are invaluable.

Hi there,
Have just joined this forum after a tough day with my OH who is 18 years my senior and has Parkinson’s and now mild dementia. Am acutely aware that I/ we are at the beginning of what could turn out to be a long and tough journey ( “ adventure”?) on a road that is well trodden by all those ahead of us, but I take courage and inspiration from reading posts such as yours which describe the ongoing love affair between you and your OH despite such v changed circumstances...so moving and beautiful.
I have dropped from full time work in a Camhs team , to two days, but even that after disturbed nights is proving hard , esp with colleagues being the source of additional stress. We are not at the care home crossroads yet though a very supportive neighbour regularly reminds me that it is an option and that there is no shame going down that path. In my darker sadder moments I do think that care staff in a good carehome would offer better care than I do when I am tired and stressed and upset at how I am being treated, And would provide much needed stimulation..but as I say we are not at that point yet. As a former and very skilled artist, I arranged someone to come to engage with my husband in some creative activity,( and company) but after only two sessions his response was that he felt patronised by my having set it up and did not want it to continue.
I find it a lonely existence, not because I am alone ( as a natural introvert I don’t get as much time to be on my own as I would like) but because my husband and lover is no longer the man I have been in love with and who I would have turned to for support, comfort and wise counsel in times of difficulty, but who I can can no longer do so with. I try every day, all the time , to accept and appreciate what we have now rather than regret the absence of what could have been, but it is hard.
I take comfort from knowing that others share the same feelings and experiences...which is why such forums as this are invaluable.

Welcome and so good to hear from you and thank you for your lovely words. We are both mental health professionals, sweetheart, not that it makes dealing with dementia any easier. It is such a sadness that things we arrange (like the art) to benefit our loved ones are rarely successful for long. I used to feel confounded in every positive thing I did and marvelled at dementia's power to subvert. So good to hear from you. with love, Geraldinex

 

[kindred]

Sorry to be on your thread so much but I have been reading it for a while and you are an inspiration Kindred. I am a retired Staff Nurse and earlier on your thread someone had said more training needs to be given. I agree our managers went on courses and to University and were supposed to filter the information down to us but never did. Though after caring for a dementia patient during a night shift she gave me a big kiss and said it's lovely how well Asda looks after us it's such a good company!!!

It's lovely that you are on here, thank you and for your kind words. That is such a lovely story. with love and best, Geraldinex

 

[kindred]

Went in very early today as have to be back early as have meeting in hour or two ...
AND
No, no, this cannot be happening ...
THE LIFT HAS BROKEN DOWN AGAIN. Engineer supposedly burning rubber to get to us.
My friends on here will recall all we went through last time and near christmas is not a good time for lifts to break down.
So take cup of tea and biscuits three floors up, also tea for me. Keith looks like a big purple bald eagle in an armchair. He is wearing his lovely purple jumper.
We actually have a good time talking in the quiet of his room and went through probably entire repertoire of songs plus a new one: Stuff it all, stuff it all, the long and the short and the tall etc.
Keith repeats words more than before and uses them as a kind of runway into song: softly softly softly (times goodness knows how many), then bum, de bum de bum.
(Bum seems to be a favourite component of his songs!0.
We talk about where we should go and Keith thinks we should give London a miss ... I agree emphatically.
As I leave, I tell him to stay put (he is still trying to stand up on his own) and he tells me he is not going anywhere ...
Ah, my beloved, beautiful blue-eyed, and that's our tragedy.
Love him so much.
So now another lift cliff hanger ...
thanks guys, love and best, Geraldinexxx

 

[Toony Oony]

Oh no, not the lift again @kindred ! I well remember the problems and frustrations when it conked out before ........ and then it happened at Mum's CH and I witnessed the whole debacle first hand. It really does put a huge spanner in the works, doesn't it?
Do look after your hip when having to take to the stairs.
I want to know what bright spark installs lifts with German parts that have to be ordered, waited for, and then fitted.
Answers on a postcard ...........

X

 

[Grahamstown]

You touched my heart with Ah, my beloved, beautiful blue eyed... @kindred and I feel like that. When the doctor was so kind and made it clear he understood, I looked at my dear sick man and almost burst into tears. He looked so stooped but looked up and smiled his sweet smile and crinkled his blue eyes. It is too cruel and you are so loyal. Look after yourself xx

 

[kindred]

You touched my heart with Ah, my beloved, beautiful blue eyed... @kindred and I feel like that. When the doctor was so kind and made it clear he understood, I looked at my dear sick man and almost burst into tears. He looked so stooped but looked up and smiled his sweet smile and crinkled his blue eyes. It is too cruel and you are so loyal. Look after yourself xx

Oh my darling, thank you, thank you what a beautiful post. Us and our blue eyed boys. We should start the blue eyed boys club, sweetheart. Thank you. with love, Geraldinexx

 

[kindred]

Oh no, not the lift again @kindred ! I well remember the problems and frustrations when it conked out before ........ and then it happened at Mum's CH and I witnessed the whole debacle first hand. It really does put a huge spanner in the works, doesn't it?
Do look after your hip when having to take to the stairs.
I want to know what bright spark installs lifts with German parts that have to be ordered, waited for, and then fitted.
Answers on a postcard ...........

X

Thank you and not really really expecting it to be mended when I go today ... still, apart from the stairs, we now know how to get a kind of social life going on the residents' floors ...
Thank you with all heart, will post the ongoing saga!
with love, Geraldinexxx

 

[AliceA]

We used to find that our boiler broke down on Christmas and bank holidays. We ended up with a spare component to DIY, not that I am expecting you to do that. Watch your hip, for the young and healthy it probably means extra mince pies without the weight gain! Not really a compensation though.
The lift we had at the retirement flat was a real pain.
Your time singing with Keith sounded so special, these are our treasures.
Good fortune for today, with love Alice

 

[Grahamstown]

Oh my darling, thank you, thank you what a beautiful post. Us and our blue eyed boys. We should start the blue eyed boys club, sweetheart. Thank you. with love, Geraldinexx

The doctor called this morning with test results, nothing serious, and had a long discussion including respite and I thought of your experience. Tears tricked down my face because he was so supportive, the first professional to actually be empathetic. He is a young doctor and maybe has had some dementia training, he seemed to know. Good luck climbing the stairs today and take care yourself, I feel you are having a moment and need some special thoughts xx

 

[kindred]

We used to find that our boiler broke down on Christmas and bank holidays. We ended up with a spare component to DIY, not that I am expecting you to do that. Watch your hip, for the young and healthy it probably means extra mince pies without the weight gain! Not really a compensation though.
The lift we had at the retirement flat was a real pain.
Your time singing with Keith sounded so special, these are our treasures.
Good fortune for today, with love Alice

Oh thank you sweetheart. I know about the boiler, it is probably British Gas busiest day ... thank you so much for your post. Love and best, Geraldine xx

 

[kindred]

The doctor called this morning with test results, nothing serious, and had a long discussion including respite and I thought of your experience. Tears tricked down my face because he was so supportive, the first professional to actually be empathetic. He is a young doctor and maybe has had some dementia training, he seemed to know. Good luck climbing the stairs today and take care yourself, I feel you are having a moment and need some special thoughts xx

Oh that is so lovely, so lovely. I am so glad about the kind doctor.
Yes, I am having a moment but you will probably never guess why ... so here goes. When I got back from church group this afternoon there was a VAST m and s parcel outside my door. so I battled indoors with it and opened it with sinking heart and it was a huge hamper of Christmas food from Keith's step brother. Keith helped him so much all his life, but this step brother has not come near Keith for three or more years, cannot take what he calls the changes. I just picked up the hamper and lugged it round the church for the delighted food bank representatives! all love, Geraldinexxxx

 

[kindred]

The lift is mended, apparently at 5.10 this morning. So impressed!! Keith is pushed in in the wheelchair and the transition from that to his armchair is very difficult this morning, he is stiff and scared. All better after tea and biscuits.
I sing the new stuff it all song and one of the residents takes over - he was drafted into the army at 18 in the war and knows perfectly the real lyrics to that song!!
I have a lot of success singing Mexican Pete the bold bandit this morning and then Keith bursts into something operatic and congratulates himself on it! That was good, he say, rather fine.
We manage a lot of conspiratorial glances and giggles although goodness knows what at.
Another resident tells me she is corresponding with the Queen Mother and we talk about the special connection between them.
But oh so cold. The nurses going outside for a fag break come back in shivering and we beg them to close the door!
More anon folks, wrap up and keep warm.
with love and best, Geraldinexxxxxx

 

[AliceA]

Oh that is so lovely, so lovely. I am so glad about the kind doctor.
Yes, I am having a moment but you will probably never guess why ... so here goes. When I got back from church group this afternoon there was a VAST m and s parcel outside my door. so I battled indoors with it and opened it with sinking heart and it was a huge hamper of Christmas food from Keith's step brother. Keith helped him so much all his life, but this step brother has not come near Keith for three or more years, cannot take what he calls the changes. I just picked up the hamper and lugged it round the church for the delighted food bank representatives! all love, Geraldinexxxx

That was a kind thought, they really need it. Xxx

 

[kindred]

OK. Today is the winner. The most bizarre residents' seminar yet.
When I went in (vile weather by the way, freezing rain), Keith asked me if they have found out what black holes are made of yet? This was followed by a seminar on the nature of black holes into which one resident suggested they were the birthing places of elephants ...
Keith a happy blue eyed boy and talked non stop when I cut his hair to spare him the argy bargy of haircut day on Monday afternoon I tell Keith I love him and he tells me I am full of wonderful things.
As usual huge protests when any of the nurses goes out of the lounge door to the outside for a fag break ... we end up with blankets around us. ...Nice and cosy though. Love the Christmas trees, too. Great.
I am booked in to christmas dinner, so looking forward to that. Staff tell me I can ask for a hot meal here whenever I like, that is so nice and if it goes on being as horrid as this I may well do.
Back on Monday guys, nearer and nearer Christmas we go ...
Thank you all for being with me!
love and best, Geraldinexx

 

[AliceA]

It sounds as if you are absorbed as part of the place. A second family indeed, it must be so good for Keith too.
He must pick up on the emotional vibes, your welcome must be a comfort. Love Alice xxx

 

[kindred]

It sounds as if you are absorbed as part of the place. A second family indeed, it must be so good for Keith too.
He must pick up on the emotional vibes, your welcome must be a comfort. Love Alice xxx

Thank you so much. What a lovely thing to say. It's lovely to be part of the team with things to offer. One of the managers has asked me to think how they can get more volunteers. That's a tough call with a specialist dementia home, but I will put my mind to it. I need to emphasise the constant supply of tea, cake and laughter. Love and best, Geraldinexxx

 

[AliceA]

Cake and laughter is a good start! You mentioned specialist, I know it sounds a special place, many places have dementia wing or floor. I take this is all Dementia. How many residents are there?
Good luck with the volunteers, a daughter planned to volunteer now she has to work on another six years.
I feel people prepared to volunteer should be able to draw pension, cheap at the price. Xxx

 

[kindred]

Cake and laughter is a good start! You mentioned specialist, I know it sounds a special place, many places have dementia wing or floor. I take this is all Dementia. How many residents are there?
Good luck with the volunteers, a daughter planned to volunteer now she has to work on another six years.
I feel people prepared to volunteer should be able to draw pension, cheap at the price. Xxx

Oh yes, I so agree, my goodness yes, about volunteers. We have 34 residents here, all with dementia, I would say two thirds with severe dementia, so volunteering would be challenging but I have hopes!
Love and best, Geraldinexx

Cake and laughter is a good start! You mentioned specialist, I know it sounds a special place, many places have dementia wing or floor. I take this is all Dementia. How many residents are there?
Good luck with the volunteers, a daughter planned to volunteer now she has to work on another six years.
I feel people prepared to volunteer should be able to draw pension, cheap at the price. Xxx

 

[kindred]

OK guys, here I am. when I arrive, nurses tell me how lively and singing he has been all morning, but when I get to him, fast asleep and stays that way!! Better luck tomorrow. Meanwhile it is hairdressing afternoon with all the wonderful yes I will and no I won'ts... very lively.
Beginning to feel Christmas must have been and gone, am getting really bushed already. What about you guys?
Love and best, Geraldinexxxx

 

[AliceA]

Just finished cards and letters, really running late this year.
Run down to workman on Wednesday and Thursday.
Not the best week but no appointments!
RVS have invited us to a tea tomorrow. A sweet lady asked us, just hope food ok for soft diet. So much easier to stay home!
Today my husband could not manage a task that once was a breeze especially for an engineer. I managed it, quite sad.
Still by Friday I will get small tree out and special decorations gathered of the years. Then I shall pick up the mood I am sure.