Casbow's Diary.

[LadyA]

I remember that feeling well, Casbow. When things got really bad with William, and he had tried to strangle me twice, so a nursing home was no longer an "option" but a necessity for both our sakes, I did all the paperwork, the financial assessments etc. and waited. Because of cutbacks etc., it took over five months and finally the intervention of a local politician before his funding was released, and I was just lucky the nursing home were able to take him immediately. During that five months, he was in emergency respite several times, and one of those times, he was so severely dehydrated from refusing to drink at home, that he couldn't stand.

We do our very best to care for our loved ones, but there comes a time when we simply can't do it alone, it's a job for a fully staffed unit, who can spread the load. xx

 

[Casbow]

I have started to leave 2 messages today and lost them both. Don't know what I am doing wrong. Just wanted to say to you Lady A that I feel I have been ,so far, more fortunate than you. You must have been so scared sometimes. I also wrote to Margaret59 and lost that. So I will give up for today. Hope you are well. xxx

 

[LadyA]

I have started to leave 2 messages today and lost them both. Don't know what I am doing wrong. Just wanted to say to you Lady A that I feel I have been ,so far, more fortunate than you. You must have been so scared sometimes. I also wrote to Margaret59 and lost that. So I will give up for today. Hope you are well. xxx

Well yes, but although I remember the way things were at that stage, the good memories have now taken precedence. He was so much better in the nursing home, and he was so much better for a good two years at home while he was on the anti psychotics, before he deteriorated, in the last months before going to full time care. So, relatively, that really bad time was a blip. It didn't feel like it at the time though!

 

[Grannie G]

It`s said when you have a baby , the pain of childbirth is forgotten as soon as the baby is in your arms.

I think in some ways it can be compared to caring for someone with dementia who has challenging behaviour.

I read posts from carers who face challenges and wonder how they survive, and then I remember because I relate to them so clearly, I faced similar challenges.

Now those challenges are behind me and I`m thankful the final four years of Dhiren`s life were as good as they could have been. Somehow, although it was still a very sad time, all the pain was erased .

I hope those who are at breaking point now will soon have calmer times when they can enjoy the company of the ones they are caring for once more.

 

[Casbow]

What lovely words GrannieG. I am rock bottom today and will post tomorrow. Very tired now.xxx

 

[LadyA]

Poor Casbow. Big hugs.xx (((.)))

 

[Margaret59]

Hi Casbow,
I've had the same problem--- losing messages. I wondered if there might be a blip in the system??
Margaret59 x

 

[Casbow]

Hi Casbow,
I've had the same problem--- losing messages. I wondered if there might be a blip in the system??
Margaret59 x

I think its me. Pushing the wrong button. Hope everyone is ok. Had to phone surgery today as I was worried about him. Anyway i didn't ask for a home visit but was offered one so I accepted. Very nice doctor arrived who we haven't seen for a few years. She has left us Antibiotics for urine infection and had a chat with me about everything. Tomorrow i have appointment with a nursing home to look round. Then I have another one on Friday to go to the home where my mum died 2 years ago. Managed to arrange for the solicitor to send me my new will, to be signed here with a couple of witnesses. Had an appointment for last Friday but David wouldn't get out of bed. In the end he was in bed for 21 hours.! So another week to try and get things done. Suddenly I realise that I have 4 birthdays to buy cards for. Simple thing like that is a big problem trying to use my precious 3 hours. Love to all.xxx

 

[Agzy]

It`s said when you have a baby , the pain of childbirth is forgotten as soon as the baby is in your arms.

I think in some ways it can be compared to caring for someone with dementia who has challenging behaviour.

I read posts from carers who face challenges and wonder how they survive, and then I remember because I relate to them so clearly, I faced similar challenges.

Now those challenges are behind me and I`m thankful the final four years of Dhiren`s life were as good as they could have been. Somehow, although it was still a very sad time, all the pain was erased .

I hope those who are at breaking point now will soon have calmer times when they can enjoy the company of the ones they are caring for once more.

As ever your words are a comfort to many GrannyG

 

[LadyA]

As ever your words are a comfort to many GrannyG

It's true though Agzy. I literally thought that either I wasn't going to survive or William wasn't, until the funding was released for William to go into full time care. I had finally applied in April of 2014, and, after much struggles, and finally getting a local politician on to it (I had actually contacted FIVE, but only one really responded), the funding was released in September. He was so aggressive and refusing to drink more than a few mouthfuls, refusing to take meds, to change close, have his pads changed. Yet, once in the nursing home, he reverted to his old, sweet natured self. Delighted to see me, his whole face would light up. No aggression, ate & drank everything, took his meds from the nurses. TBH, I wouldn't have swapped that time with him for anything. It gave us back a quality of relationship that had been destroyed by his illness. Even though he didn't really know exactly who I was, he knew that I was someone he loved more than anyone else.

 

[Casbow]

It's true though Agzy. I literally thought that either I wasn't going to survive or William wasn't, until the funding was released for William to go into full time care. I had finally applied in April of 2014, and, after much struggles, and finally getting a local politician on to it (I had actually contacted FIVE, but only one really responded), the funding was released in September. He was so aggressive and refusing to drink more than a few mouthfuls, refusing to take meds, to change close, have his pads changed. Yet, once in the nursing home, he reverted to his old, sweet natured self. Delighted to see me, his whole face would light up. No aggression, ate & drank everything, took his meds from the nurses. TBH, I wouldn't have swapped that time with him for anything. It gave us back a quality of relationship that had been destroyed by his illness. Even though he didn't really know exactly who I was, he knew that I was someone he loved more than anyone else.

Lovely to hear your story LadyA.xx

 

[LadyA]

Lovely to hear your story LadyA.xx

I realise how very lucky I was, Casbow. It doesn't happen that way for everyone.

 

[Casbow]

I have just posted on the thread "Sad Thoughts.". Probably should post here as well. Maybe tomorrow. You are all such good friends. xx

 

[jugglingmum]

I've read your post on sad thoughts, and sending you a hug.

You have done your best, and probably way beyond what you should have done.

I hope the assessment works out for you, as you certainly need some respite to go on caring.

 

[LadyA]

Just replied on the other thread. Will be thinking of you tomorrow. Hope it goes "well". It was I think, easier for me at the time, because William had been in Respite four times between April and when he went to full time care in September. He was actually in emergency Respite when the funding came through, so he was just transferred to the permanent nursing home. It was supposed to be a temporary move. I didn't like that nursing home when I'd looked at it. But things were bad enough that it was necessary to take what was available. Turned out, it was a really good nursing home, just a bit shabby. Excellent care and staff. William thrived- I do hope your husband will settle and thrive too, and you can both have some peace.

 

[Casbow]

Just replied on the other thread. Will be thinking of you tomorrow. Hope it goes "well". It was I think, easier for me at the time, because William had been in Respite four times between April and when he went to full time care in September. He was actually in emergency Respite when the funding came through, so he was just transferred to the permanent nursing home. It was supposed to be a temporary move. I didn't like that nursing home when I'd looked at it. But things were bad enough that it was necessary to take what was available. Turned out, it was a really good nursing home, just a bit shabby. Excellent care and staff. William thrived- I do hope your husband will settle and thrive too, and you can both have some peace.

Thank you. I hope i will sleep a bit. Not been sleeping very well for some time. I go to sleep but wake 3 or 4 in the morning and thats it. Very annoying. !xxx

 

[Grannie G]

Dear Casbow

Reading of your sadness gives me the same feeling deep in the the pit of my stomach as I had when my husband went into respite for the first and only time.

I was frightened to phone the home to find out how he was, fearing I would burst into tears and be unable to talk.

He was fine .

When I went to bring him home at the end of the week, he was sitting by the fireplace as contented as could be. One of the staff said he had been `a darling`. When I asked if he`d like to come home his face lit up .

Sadly he lasted only three weeks at home before he was back in the care home as a permanent resident.

I wish everything I wished for myself for you and your husband tomorrow. I really do share your sadness and just hope all will work out well and you will get some peace of mind.

 

[Cat27]

I'll be thinking of you today Casbow.

 

[Izzy]

Thinking of you today Casbow, and wishing you strength. I hope it goes well.

 

[Grannie G]

I hope today is better than you expect Casbow.