Please don't throw me away, breaking my promise

[70smand]

The staff at your OH’s home sound so lovely and supportive, but I think I might cry too if I heard a beautiful rendition of over the rainbow, I love Eva Cassidy’s version. I wish I had lovely singing voice but whenever I sing dad usually laughs. Mum said there were some lovely entertainers at dad’s home the other day who sang beautifully and did funny sketches, she really enjoyed them as did the other residents, although she is never to sure how much dad took in as he was quite sleepy.
I was thinking about your question ‘it isn’t what you’ve had, it’s what you have now that counts’ and I’m not really too sure what to make of that either, I think I’ll let someone else answer that one.
Two weeks ago dad was really drowsy and we were wondering if this was a downturn in his condition. I could see my mum was devestated, but his medication was reduced and we saw him come back to life within a couple of days, sadly though he can still no longer walk though. Dad’s brother was over from America last month and it had been just under a year since he visited and I think he was shocked and saddened at the vast deterioration in his little brother. It’s all so heartbreaking and so cruel.
My dad always looked so fit and well and younger than his years that many people didn’t realise he had dementia to look at him. He could fool people for a long time by not saying much but answering appropriately with short reply’s to questions. He no longer can fool people anymore but still doesn’t look 72.

 

[kindred]

The staff at your OH’s home sound so lovely and supportive, but I think I might cry too if I heard a beautiful rendition of over the rainbow, I love Eva Cassidy’s version. I wish I had lovely singing voice but whenever I sing dad usually laughs. Mum said there were some lovely entertainers at dad’s home the other day who sang beautifully and did funny sketches, she really enjoyed them as did the other residents, although she is never to sure how much dad took in as he was quite sleepy.
I was thinking about your question ‘it isn’t what you’ve had, it’s what you have now that counts’ and I’m not really too sure what to make of that either, I think I’ll let someone else answer that one.
Two weeks ago dad was really drowsy and we were wondering if this was a downturn in his condition. I could see my mum was devestated, but his medication was reduced and we saw him come back to life within a couple of days, sadly though he can still no longer walk though. Dad’s brother was over from America last month and it had been just under a year since he visited and I think he was shocked and saddened at the vast deterioration in his little brother. It’s all so heartbreaking and so cruel.
My dad always looked so fit and well and younger than his years that many people didn’t realise he had dementia to look at him. He could fool people for a long time by not saying much but answering appropriately with short reply’s to questions. He no longer can fool people anymore but still doesn’t look 72.

Oh thank you for your beautiful, poetic post, I am so so grateful to you. It must have been hard for Dad's brother. It is heartbreaking and cruel. Today I visited with my own son and that was good. I could see Peter was getting upset after about an hour so I sent him home while I gave OH his dinner. Your dad sounds a beautiful man, and your mum.
Over the rainbow so emotional. And the lovely young man who was singing it also sung Dean Martin's Sway which is amazing and I haven't heard in years. OH seemed to love that, too. These entertainers that go round to homes are terrific. I would like to dress up in a blonde wig and do a Marilyn Monroe. I may do that at Christmas.
It means so much to hear from you, thank you with all heart.

 

[70smand]

It’s a shame that your Oh and my dad aren’t in the same home as I bet you and my mum would get on well. Mum and dad are both 72 and have been together since they were 17.
I think my brother finds it difficult visiting my dad and that’s ok as long as he still sees my mum. A few years ago whilst dad was still ok he used to take dad to galleries and photographic exhibitions, as they are both keen on art and photography. My dad was an artist and I think his Alzheimer’s became obvious quite early on when he lost the ability to paint.
You sound very brave if you really do dress up as Marilyn Monroe and don a blond wig - that would really cause a stir .
We haven’t had any rain for over a week but it’s certainly making up for it now! Am sitting listening to the rain and I don’t think I will watch Eurovision tonight

 

[kindred]

It’s a shame that your Oh and my dad aren’t in the same home as I bet you and my mum would get on well. Mum and dad are both 72 and have been together since they were 17.
I think my brother finds it difficult visiting my dad and that’s ok as long as he still sees my mum. A few years ago whilst dad was still ok he used to take dad to galleries and photographic exhibitions, as they are both keen on art and photography. My dad was an artist and I think his Alzheimer’s became obvious quite early on when he lost the ability to paint.
You sound very brave if you really do dress up as Marilyn Monroe and don a blond wig - that would really cause a stir .
We haven’t had any rain for over a week but it’s certainly making up for it now! Am sitting listening to the rain and I don’t think I will watch Eurovision tonight

Oh I'm up for anything like a blonde wig and singing. That's something I am trying so hard to get back, some kind of sense of self and fun. I lost all that completely for four years. That's so lovely to hear about your dad and art and photography. In Oh's home there is an engineer who built a stunning sports car out of old scraps! Very quiet in there today as activity nurses don't come in weekends, but lots of visitors taking their beloved ones out in wheelchairs. I guess I should try this with Oh but have a very bad hip (should have had replacement but you can't if a carer and I will just put up with it now as must be with Oh every day). He never asks to go outside and seems happy with the company inside. He must have been so lonely with just me to look after him. I didn't see that at the time. I don't think I saw much beyond the next hour at the time. Listen, have any of you guys lost the password to your mind, as it were? I think my OH having the terrible fall a couple of months ago, ambulances everywhere, then A and E and admission etc etc was such a shock that my mind kind of closed down and it's proving very hard to get creative as I used to be. It's as though I'm afraid to do it. Has this happened to you, please tell me. Thank you so much for posting, means the world.

 

[kindred]

Spent several years thinking all wanted to do was walk away from terrible situation with OH. Just to close the door and walk away. Could not imagine what that felt like. Used to hear footsteps of those who walked away and shut my gate ...
Now, with Oh in nursing home, all my mind goes towards when finish work today and can go and be with him there for a couple of hours.
No, I could not have him back at home, situation too severe, but my mind is always with him, wherever. What a strange and wrenching life this becomes when dementia is involved like this.

 

[kindred]

Back again, called in at OH home on way back from work, stayed hour or so as usual. Chocolate cake today and it crumbled like mad so lot of floor sweeping. OH had two slices with his tea. Hairdresser was in and my goodness, she creates amazing hair fashions so beautifully. So skilled. OH sleepy as is the case in the afternoons. I woke him up gently and whispered, it's me, sweetheart, and he said I should think so too ...

 

[Caz60]

Back again, called in at OH home on way back from work, stayed hour or so as usual. Chocolate cake today and it crumbled like mad so lot of floor sweeping. OH had two slices with his tea. Hairdresser was in and my goodness, she creates amazing hair fashions so beautifully. So skilled. OH sleepy as is the case in the afternoons. I woke him up gently and whispered, it's me, sweetheart, and he said I should think so too ...

Hi Kindred,like yourself I call each day and try and be as useful as I can being kind and talking to everyone who is in the lounge,I quite enjoy it being part of the daily routines ,hair and nail day or pet day it really is relaxing .
I consider myself lucky that I can leave other half in caring hands .
I went in yesterday and during our mismatch non conversation,he spoke quite clearly and said .....He heard I've been putting it about a bit......I was so gobsmacked I said bye bye and I will see you later.Although I know and understand I was so hurt and just gave myself a day off today ...in the garden and it was great .Yes I will go tomorrow and see what is in front of me ,I think it's nature's way of saying step back a little so I am doing ...Im laughing today by the say.xx
Much love to all

 

[kindred]

Hi Kindred,like yourself I call each day and try and be as useful as I can being kind and talking to everyone who is in the lounge,I quite enjoy it being part of the daily routines ,hair and nail day or pet day it really is relaxing .
I consider myself lucky that I can leave other half in caring hands .
I went in yesterday and during our mismatch non conversation,he spoke quite clearly and said .....He heard I've been putting it about a bit......I was so gobsmacked I said bye bye and I will see you later.Although I know and understand I was so hurt and just gave myself a day off today ...in the garden and it was great .Yes I will go tomorrow and see what is in front of me ,I think it's nature's way of saying step back a little so I am doing ...Im laughing today by the say.xx
Much love to all

Oh thank you so so muych. I love it with the mismatch conversation. But my goodness, what your OH said. How do you feel this morning? We are human and it is asking superhuman things not to be hurt by this sort of comment, even if we know it is the dementia and all that. My OH told me I was dead and he went to my funeral, once couple of years ago!
I like being part of the routines too, makes me feel useful and sort of eases the loneliness. Thank you with all heart for posting, so good to read.

 

[kindred]

Here I am then, just back. Bit of an adventurous morning. I somehow went to the wrong floor in the lift and was confronted with one of the residents with several bags packed and announcing he is leaving now. I hopefully encouraged him to stay but there was no sign of unpacking ...
Then a posse of residents were taken to a reception room where they are taking part in an art project with children from the local secondary. This should be interesting. Some of the most profoundly disabled residents were taken up. At some point we heard that the BBC were there! Local tv or Radio Bristol I do not know. Will find out in due course.
OH in good form, eating everything. One of the nurses told me that a social worker was coming to see him next week and she would find out exactly when. This threw me completely. Apart from the lovely hospital social worker who helped me find this nursing home, I have had such a bad time with social workers that the mere mention makes me feel afraid of their negative power. The administrator said it's probably just for the healthcare funding and nothing to worry about and they aren't going to make me have OH home again. I feel a bit bad that I am so frightened of this. It really was such a searing experience being a sole carer for so many years as many of you know and I am still trying to find the password to my mind. Thank you for being with me.

 

[kindred]

Me again! Thank you for reading. Got to OH home after work this afternoon. OH always more confused in afternoon and getting bit paranoid, I think he thought his cup of tea was a bouncing bomb! Anyway, home is getting decked out for the wedding on Saturday ... this should be interesting. Administrator has assured me that the social worker will not expel us, she says it's just for the minimal funding which he is sure to get, not the big one that no one gets these days, is what she says. You have only to mention social workers to me and all my courage just goes ... Yes, it really was that bad, apart from the one who found me the vacancy here. Love and best, back tomorrow!

 

[kindred]

Here I am. It is such such a gift to be able to come home from seeing OH and tell you about it. Such a gift and I am so grateful to you all.
Good visit, strange day though, so many residents on the wander today, felt like a kind of walking stadium. Staff great with them, usually go with them, holding their arms, round and round, round and round. Staff tell me that people who wander all day do usually sleep at night so that is a bonus.
OH working through a complicated negotiation with a man who, he whispered to me is a CRAFTY S... so we planned our negotiation strategy to put to the board of directors ... This mightily amuses the staff as they overhear it.
I sung my usual song to OH - hey ho, hey ho it's off to work we go. We used to sing this together when we went to work for so many years. I even managed a descant to it and of course, OH made up rude words ...
I must try Nellie the elephant, that used to be another favourite ...
I still feel like I am in a nightmare and one day I will wake up and we will be back together again at home. This can't be happening .. you know how I feel. Thank you for being with me.

 

[70smand]

Hello Kindred, I would love to hear you singing with your husband. Sorry you feel it’s such a nightmare at times as you really seem to make the most out of your visits. As long as mum gets a reaction or a few words from dad she feels her visit is worthwhile. I don’t know how it will be further down the line. I was working over the weekend and dad was less well and the care home were so concerned that they wanted to know whether we wanted him sent to hospital. I raced in to see him before work on Sunday and he appeared very drowsy and slurring his words. He appeared over medicated to me although at first I thought he’d had a stroke. He was rousable but could barely open his eyes. He still managed to eat and drink well when fed though, but that’s one thing dad hasn’t lost is his appetite. We tentatively decided to hold off sending him to hospital as the care home staff look after him well and all his observations were normal. We asked the staff to withhold one of his meds as it had recently been halved due to side effects and it paid off as he has gradually woken back up after a few days and appears his usual self now. On Wednesday he looked up at me right in the eye and said I looked pretty. Considering he seems to have trouble seeing usually this really made my day.
They had a little royal wedding party with an entertainer singing on Wednesday which mum said was lovely and dad managed to stay awake. Will you be watching the royal wedding or are you fed up with it all.?

 

[kindred]

Hello Kindred, I would love to hear you singing with your husband. Sorry you feel it’s such a nightmare at times as you really seem to make the most out of your visits. As long as mum gets a reaction or a few words from dad she feels her visit is worthwhile. I don’t know how it will be further down the line. I was working over the weekend and dad was less well and the care home were so concerned that they wanted to know whether we wanted him sent to hospital. I raced in to see him before work on Sunday and he appeared very drowsy and slurring his words. He appeared over medicated to me although at first I thought he’d had a stroke. He was rousable but could barely open his eyes. He still managed to eat and drink well when fed though, but that’s one thing dad hasn’t lost is his appetite. We tentatively decided to hold off sending him to hospital as the care home staff look after him well and all his observations were normal. We asked the staff to withhold one of his meds as it had recently been halved due to side effects and it paid off as he has gradually woken back up after a few days and appears his usual self now. On Wednesday he looked up at me right in the eye and said I looked pretty. Considering he seems to have trouble seeing usually this really made my day.
They had a little royal wedding party with an entertainer singing on Wednesday which mum said was lovely and dad managed to stay awake. Will you be watching the royal wedding or are you fed up with it all.?

Oh so lovely to hear from you!! So glad your dad better and said you looked pretty. I could live for a month on that, if you know what I mean. I'll be watching it first of all in the church where i'm on duty on monthly coffee morning and then rush up to OH home to see rest of it there. Balloons already up!! So so very good to hear from you. Your mum sounds lovely.

 

[kindred]

Here I am, bit earlier than usual. Been with Oh all morning. I am formulating a theory. It seems to me that the higher the light level, and where OH and residents are all day is very light sensitive, the more energetic (wandering and aggression) the behaviour. I wonder why this would be?
Anyway, Oh doesn't do either, but talks all the time and staff tell me he talks all night (mind you he did at home, too). I know tqalking is better than silence, get that.
Staff trying to do a brief version of Shakespeare - Romeo and Juliet (the day lounge has a small balcony) which brought forth crude comments from residents and hoots of laughter from the rest of us.
OH told me he would be awarding me a pay rise today ...
Do you think I'm still sane???

 

[nitram]

Do you think I'm still sane???

Don't know.
Almost by definition the the majority are the ones who are sane.
This has to be taken as a global statement, not related to any specific gathering.

 

[kindred]

Don't know.
Almost by definition the the majority are the ones who are sane.
This has to be taken as a global statement, not related to any specific gathering.

Well, that's true! Food for thought there. Thank you!!

 

[kindred]

Well, today was different. Tried to get in using the combination lock but no luck. Seems one of the residents is trying to get out and has fathomed the lift ... Mind you, I did see him casing the windows and doors yesterday ... Staff have to let us in and out over the weekend. No worries.
First thing today I went to help my local church set up our monthly coffee morning and found a big wide screen in the church hall, because they were streaming THE WEDDING ... Then on to OH home where they were streaming THE WEDDING. I wore a pretty frock in honour of it. Oh said to me, now listen carefully to what I am going to tell you, even you could understand this ....Later, met a respite resident and his family and oh dear, what a tale of endurance the sole carer wife had to tell, what shocking treatment. So glad she has got respite (well, she has to pay for it but you know what I mean). The social workers once offered her the equivalent of a hot stone massage (that I was offered). Think we've made firm friends there.

 

[kindred]

Went early today so just back. My goodness, it was wandering and losing one shoe morning! So many residents (well three) kicking off one shoe as they wandered. Wonder what this is about!! Very hot so a lot of sleeping. Oh drifting in and out of sleep. When I say to him very firmly, look at me sweetheart, he does and then I can tell him how much I love him and he always whispers something back which sounds like affection. Otherwise he is always looking the other way ... does anyone else experience this looking the other way lark?
So hot and lacking in energy this morning that I was grateful for the gorgeous dragonfly pair zooming up and down in front of the nursing home windows. Lovely to watch. Energy in movement.

 

[carolynp]

Went early today so just back. My goodness, it was wandering and losing one shoe morning! So many residents (well three) kicking off one shoe as they wandered. Wonder what this is about!! Very hot so a lot of sleeping. Oh drifting in and out of sleep. When I say to him very firmly, look at me sweetheart, he does and then I can tell him how much I love him and he always whispers something back which sounds like affection. Otherwise he is always looking the other way ... does anyone else experience this looking the other way lark?
So hot and lacking in energy this morning that I was grateful for the gorgeous dragonfly pair zooming up and down in front of the nursing home windows. Lovely to watch. Energy in movement.

Such a vivid image of the glorious pair of dragonflies! They seem to me like a timely, perfect symbol of loving devotion between a couple. No wonder they made your heart lift, especially because - here, anyway - it would be very rare to see two together.

I used to swim in an outdoors pool and large dragonflies would sometimes hover over the water in hot weather to have a drink. One at a time, though! They seemed to carry deep meaning shimmering within them.

I am pleased you are carrying out your clerical, administrative and negotiating difficulties so well, at your husband’s instruction, as you’ve been telling us lately. Have a gold star! Have two!

 

[kindred]

Such a vivid image of the glorious pair of dragonflies! They seem to me like a timely, perfect symbol of loving devotion between a couple. No wonder they made your heart lift, especially because - here, anyway - it would be very rare to see two together.

I used to swim in an outdoors pool and large dragonflies would sometimes hover over the water in hot weather to have a drink. One at a time, though! They seemed to carry deep meaning shimmering within them.

I am pleased you are carrying out your clerical, administrative and negotiating difficulties so well, at your husband’s instruction, as you’ve been telling us lately. Have a gold star! Have two!

Thank you so much! But he did promise me a pay rise last week ... Oh, swimming in a pool with dragonflies over you. I greatly appreciate the gold stars!! I don't know what activities are planned for next week at OH home, but will keep you informed. Honestly, my concerns are so much with the progress of the residents there and the little dramas, setbacks, funny moments ... how would anyone outside this post ever understand!! So good to hear from you, thank you.