Please don't throw me away, breaking my promise

[kindred]

OK, so today rush in to OH's home after work to be confronted by THE SOCIAL WORKER. She had come to assess OH for DEPRIVATION OF LIBERTY. This is to be followed by psychiatrist visit for the same thing ... Come to test whether or not he has capacity (he's probably had about 8 capacity tests by now). My beloved OH is profoundly disabled, cannot answer questions, cannot express his needs, cannot stand or move. Would not know what to do with liberty if he had it. Even so, having had diabolical experiences with LA social workers, i am frightened sick of them moving OH or whatever ... It was a nice young girl whose grandfather had dementia and she could see that K had high level of needs. And I know they are following the laws of the country etc etc. What can I say? Feel none the less distressed at having to have it demonstrated how disabled Oh is. Nursing home staff so supportive to me, could see I was frightened. LA social workers diminished me so badly and I had no power to cope with them. To be fair, the Social worker when OH was in hospital was magnificent and helped me to find OH's current home.
Anyway, after they had gone, a kind of miracle. I think OH sensed I was upset, we know each other so well of course. He tried to put his arm round me, and I bent down and he kissed me and it was all worthwhile.
Fear not, dear friends, I will have calmed down by tomorrow. Thank you for being with me.

 

[70smand]

Sorry to hear to have such a fear of social workers. I think Mum and I have met so many that we can’t remember what they all did. A few stick in my mind, two for good reasons and one because he was completely useless!
Dad is so up and down at the moment that it’s all still a bit of a rollercoaster. Yesterday his consultant gave us permission to stop the medication that doesn’t seem to be agreeing with dad and then last night he has some sort of seizure. Mum witnessed it whilst he was on the toilet but sounds quite mild compared to the two previous seizures he had and the last one was over a year ago, so we will see what the gp says.
You mention oh looking the other way - dad does that all the time, and I can see it drives mum to distraction, especially when trying to feed him supper. He just can’t seem to see what’s in front of him most of the time and other times he will look straight at you out of the blue, right in the eye.
My youngest came home last night from uni just for a couple of days - she’s not been well and had an exam yesterday so I think she needs some tlc and spoiling (and her washing done!). First thing she asks is how’s Nan and Grandad. Mum came straight round for a hug from Dads care home- I think it did them both good .
Let’s see what today brings......

 

[kindred]

Sorry to hear to have such a fear of social workers. I think Mum and I have met so many that we can’t remember what they all did. A few stick in my mind, two for good reasons and one because he was completely useless!
Dad is so up and down at the moment that it’s all still a bit of a rollercoaster. Yesterday his consultant gave us permission to stop the medication that doesn’t seem to be agreeing with dad and then last night he has some sort of seizure. Mum witnessed it whilst he was on the toilet but sounds quite mild compared to the two previous seizures he had and the last one was over a year ago, so we will see what the gp says.
You mention oh looking the other way - dad does that all the time, and I can see it drives mum to distraction, especially when trying to feed him supper. He just can’t seem to see what’s in front of him most of the time and other times he will look straight at you out of the blue, right in the eye.
My youngest came home last night from uni just for a couple of days - she’s not been well and had an exam yesterday so I think she needs some tlc and spoiling (and her washing done!). First thing she asks is how’s Nan and Grandad. Mum came straight round for a hug from Dads care home- I think it did them both good .
Let’s see what today brings......

Oh that is so lovely, thank you so much. Hope your daughter gets better very soon, of course she needs loving care from you! Sorry about your dad's seizure, too. Thank you for telling me about the looking at the other way. No, my OH can't see what's in front of him. I'm not going the glasses route because he has already flushed 3 pairs down the loo. You know, come to that, I notice other residents at OH home doing this other way looking .. It is so so good to hear from you, thank you! Off to OH home in about an hour. More anon.

 

[kindred]

Yes, I know I said I would be calmer after today's visit but today we had THE PHONE CALL. I wish I could find these mad signs of the times funny, but I can't. A phone was brought to OH because he had a phone call. Well, obviously, the first thing was he tried to eat it, but it was then held to his ear by the nurse. I explained to her, didn't think I need to, that he didn't know the phone from his elbow, and she whispered she knew that, but it was a national health thing about a routine scan and they had to speak to him. She tried but got no reply of course, so I said to the nurse let me speak to them and I could hear the woman the other end say they would not speak to families, so we hung up. The nurse said this happens all the time. It isn't really funny is it?

 

[carolynp]

Yes, I know I said I would be calmer after today's visit but today we had THE PHONE CALL. I wish I could find these mad signs of the times funny, but I can't. A phone was brought to OH because he had a phone call. Well, obviously, the first thing was he tried to eat it, but it was then held to his ear by the nurse. I explained to her, didn't think I need to, that he didn't know the phone from his elbow, and she whispered she knew that, but it was a national health thing about a routine scan and they had to speak to him. She tried but got no reply of course, so I said to the nurse let me speak to them and I could hear the woman the other end say they would not speak to families, so we hung up. The nurse said this happens all the time. It isn't really funny is it?

Gosh how incredibly frustrating! Person at other end of phone gets to tick a box marked Failure to respond - or words to that effect - and can swiftly move on to the next call. And to think the telephone was invented as a method of communication! Words fail me!

 

[kindred]

Gosh how incredibly frustrating! Person at other end of phone gets to tick a box marked Failure to respond - or words to that effect - and can swiftly move on to the next call. And to think the telephone was invented as a method of communication! Words fail me!

Thank you. It is yet another form of madness, isn't it And this awful refusal to talk to families as though we are somehow the enemy. I wonder what on earth I will be faced with today when I go to OH home .. Of course I will be telling you all about it. Thank God for being able to share this journey.

 

[carolynp]

Thank you. It is yet another form of madness, isn't it And this awful refusal to talk to families as though we are somehow the enemy. I wonder what on earth I will be faced with today when I go to OH home .. Of course I will be telling you all about it. Thank God for being able to share this journey.

Yes thank God indeed, @kindred I fervently agree with you. GOOD LUCK for today, I'll be thinking of you, as I am sure will many others on TP.

The trouble is one has somehow to combine the cunning of the serpent, in biblical terms, with a calm, friendly, relaxed, sunny, innocent demeanour. One can't let one's guard down for a moment, even though it's exhausting to have to be on the alert all the time, lest something disadvantageous slip by you, and adversely affect the disadvantaged person you are caring for.

Re bureaucratic complication of the situation for someone who's already in extreme need, to the point of madness for those responsible for them: may I share my favourite anecdote. Our younger (special needs) son qualified, if at respite care or going on a camp, for something called an "isolated children's allowance", to help with his costs of living away. The amount was laughable, covering maybe a tenth of the actual sum needed. The form was sixteen pages long, and of a complexity that even postdoctoral study had not confronted me with, back in my (at this point, long-gone) youth.

It infuriated me so much that I was determined to keep on applying, and so I did, for all the years our son was eligible, and I duly collected the few dollars it paid out, usually months afterwards. Only later, when talking ruefully to another mother of a special needs child, who worked in education, did I learn that there was, famously, only ONE government form that was worse: the one required for children in remote (Aboriginal) communities to qualify for an education allowance.

 

[kindred]

Yes thank God indeed, @kindred I fervently agree with you. GOOD LUCK for today, I'll be thinking of you, as I am sure will many others on TP.

The trouble is one has somehow to combine the cunning of the serpent, in biblical terms, with a calm, friendly, relaxed, sunny, innocent demeanour. One can't let one's guard down for a moment, even though it's exhausting to have to be on the alert all the time, lest something disadvantageous slip by you, and adversely affect the disadvantaged person you are caring for.

Re bureaucratic complication of the situation for someone who's already in extreme need, to the point of madness for those responsible for them: may I share my favourite anecdote. Our younger (special needs) son qualified, if at respite care or going on a camp, for something called an "isolated children's allowance", to help with his costs of living away. The amount was laughable, covering maybe a tenth of the actual sum needed. The form was sixteen pages long, and of a complexity that even postdoctoral study had not confronted me with, back my (at this point, long-gone) youth.

It infuriated me so much that I was determined to keep on applying, and so I did, for all the years our son was eligible, and I duly collected the few dollars it paid out, usually months afterwards. Only later, when talking ruefully to another mother of a special needs child, who worked in education, did I learn that there was, famously, only ONE government form that was worse: the one required for children in remote (Aboriginal) communities to qualify for an education allowance.

Enough said!

Thank you so much and what a story about that form to fill in for your son ... Dont know if you get this where you are but a lot of our forms you have to fill in as though you were the PWD only you have to fill them in as though they were sane.

So for example:

I am a 72 year old man who needs help with personal care, feeding, toileting mobility, dressing, all communication, just about everything, but I like wildlife and flowers

I wish I was joking.
What was your post doctoral work in?
Thankyou so much. Greatly appreciated.

 

[carolynp]

Thank you so much and what a story about that form to fill in for your son ... Dont know if you get this where you are but a lot of our forms you have to fill in as though you were the PWD only you have to fill them in as though they were sane.

So for example:

I am a 72 year old man who needs help with personal care, feeding, toileting mobility, dressing, all communication, just about everything, but I like wildlife and flowers

I wish I was joking.
What was your post doctoral work in?
Thankyou so much. Greatly appreciated.

No!!! This would be funny if it wasn’t so awful!

My postdoctoral work was on the use of biblical typology (arcane method of exegesis) by Puritans in Old and New England in the 1640s. (Now you know!)

 

[kindred]

No!!! This would be funny if it wasn’t so awful!

My postdoctoral work was on the use of biblical typology (arcane method of exegesis) by Puritans in Old and New England in the 1640s. (Now you know!)

Oh Wow and treble Wow!! I love it. My masters was on aspects of medieval manuscript science. I can see we have a lot in common here!

 

[kindred]

Me again, thank you folks. In tears today but not because of a bureaucratic cockup. OH was so sweet, so kind, his unfocused blue eyes so beautiful. God, how can you love someone this much, go through this and stay alive? I'm sure so many many of us wonder this. Anyway it was chair dancing and the lovely lady played a good lot of rousing Elvis stuff and that was great but then she put on YESTERDAY and of course, OH was in tears and so was I. Just too emotional. More anon and thank you with all my heart. It is so so good to come back and talk to you.

 

[70smand]

[QUOTE="My postdoctoral work was on the use of biblical typology (arcane method of exegesis) by Puritans in Old and New England in the 1640s. (Now you know!)[/QUOTE]

A wow from me too Carolyn! And to you Kindred- I’m afraid I have no clue on either topic.

I understand with all the form filling- I had to redo the attendance allowance form mum filled in for dad because she didn’t want to make him sound too bad!
The singing and entertainment sounds so lovely and so moving to get such a reaction from OH. There was a lovely singer at dads home yesterday but he was a bit sleepy. Mum enjoyed it though and had a dance with some of the residents. I visited with my daughter but dad wasn’t very responsive yesterday which was a shame. He didn’t really respond much to her voice and I couldn’t even get him to smile, which I usually manage, and she always does. He wasn’t in an unhappy place though but i felt sad for her. It was an all too brief visit and she’s back at uni now. I did get to spend as much time with her as I could and I think she’s on the mend. It was lovely to hear her playing the piano whilst I did her ironing. Other daughter will be home for the bank holiday weekend, just a shame they couldn’t both be home together.

 

[carolynp]

Oh Wow and treble Wow!! I love it. My masters was on aspects of medieval manuscript science. I can see we have a lot in common here!

Wow right back at you!!! More to discuss!

 

[imsoblue]

Oh Wow and treble Wow!! I love it. My masters was on aspects of medieval manuscript science. I can see we have a lot in common here!

You and @carolynp crack me up! My masters is in landscape architecture. I don't think your programs were offered at my college.

 

[PalSal]

Me again, thank you folks. In tears today but not because of a bureaucratic cockup. OH was so sweet, so kind, his unfocused blue eyes so beautiful. God, how can you love someone this much, go through this and stay alive? I'm sure so many many of us wonder this. Anyway it was chair dancing and the lovely lady played a good lot of rousing Elvis stuff and that was great but then she put on YESTERDAY and of course, OH was in tears and so was I. Just too emotional. More anon and thank you with all my heart. It is so so good to come back and talk to you.

Dear Kindred....the Beatles...what a wonderful song...no wonder you and OH in tears. My husband is not a music person. But on special ocassions like birthdays and gatherings of our children and close friendswhom he loves, my OH is very emotional. This year it was his birthday. He also gets emotional when we visit our daughter at work and she is busy and comes along in her authoritative whites and her stethoscope hanging around her neck....he has cried at those times, he is so proud of her. It is always surprising as he was such a stiff upper lipped public school kind of guy. But it am happy in those moments to know he is still connected to us all.

 

[kindred]

Dear Kindred....the Beatles...what a wonderful song...no wonder you and OH in tears. My husband is not a music person. But on special ocassions like birthdays and gatherings of our children and close friendswhom he loves, my OH is very emotional. This year it was his birthday. He also gets emotional when we visit our daughter at work and she is busy and comes along in her authoritative whites and her stethoscope hanging around her neck....he has cried at those times, he is so proud of her. It is always surprising as he was such a stiff upper lipped public school kind of guy. But it am happy in those moments to know he is still connected to us all.

Thank you, that is so beautiful, so beautiful. Crying with pride just so lovely. Thank you with all heart. Means the world.

 

[kindred]

[QUOTE="My postdoctoral work was on the use of biblical typology (arcane method of exegesis) by Puritans in Old and New England in the 1640s. (Now you know!)

A wow from me too Carolyn! And to you Kindred- I’m afraid I have no clue on either topic.

I understand with all the form filling- I had to redo the attendance allowance form mum filled in for dad because she didn’t want to make him sound too bad!
The singing and entertainment sounds so lovely and so moving to get such a reaction from OH. There was a lovely singer at dads home yesterday but he was a bit sleepy. Mum enjoyed it though and had a dance with some of the residents. I visited with my daughter but dad wasn’t very responsive yesterday which was a shame. He didn’t really respond much to her voice and I couldn’t even get him to smile, which I usually manage, and she always does. He wasn’t in an unhappy place though but i felt sad for her. It was an all too brief visit and she’s back at uni now. I did get to spend as much time with her as I could and I think she’s on the mend. It was lovely to hear her playing the piano whilst I did her ironing. Other daughter will be home for the bank holiday weekend, just a shame they couldn’t both be home together.[/QUOTE]
Oh lovely to hear from you. I know about the attendance form, I felt obliged to write I LOVE HIM VERY MUCH on mine, having made him sound so difficult!! Yes, that's so difficult when we can't get our loved ones to smile. I even ask my OH for a smile and sometimes he responds to that. Beggar me. Great to spend time with your daughter, and other one coming. Thank you so much, my world gets bigger and better every time someone like you talks to me.

 

[kindred]

You and @carolynp crack me up! My masters is in landscape architecture. I don't think your programs were offered at my college.

Yes, but for me this was a long time ago, but having said that, believe me, people research some pretty way out stuff now (only they pay to do it!).

 

[kindred]

Wow right back at you!!! More to discuss!

Well, there were a lot of never looked through manuscripts at my Uni and I was discovering interesting stuff about monastic changes to the most popular poems of the day. You?

 

[kindred]

Back again! Mixed bag, as it were. Fantastic morning,everyone happy, engaged, activity nurses doing a one to one and what's this peculiar kitchen utensil? OH singing with me. We used to go to work singing
hey ho, hey ho, it's off to work we go, with a bucket and spade and a hand grenade, hey ho, hey ho.
But I sense it's not appropriate to use the hand grenade thing any more, so have changed it to
with a bucket and spade in the sea we'll wade ... and everyone happily sings along now.
AND OH actually flirted with a new healthcare assistant who flirted back. It was a real hoot and indicative of the atmosphere.
BUT then ... one of the new residents who actually presented as fairly normal initially has begun to show his dementia more and more and he thinks he is chairman of a running club and the nurses are in a conspiracy to prevent him from telling President Bush. Fine, par for the course, but he engages all the staff in accusatory conversations, or tries to, about how they are part of the conspiracy. And just goes on and on until the energy drops everywhere ... At one stage, I rescued one of the nurses who had been buttonholed endlessly by telling her loudly I was feeling dizzy and I wanted a cup of tea ... He really is a nice bloke and I know, it's the illness ...
Anyway, I shall treasure OH's initial happiness.