Casbow's Diary.

marionq

Registered User
Apr 24, 2013
6,014
Scotland
I don't know Lady A. I hope he doesn't have another one but will be aware of that next time. If my visit is at the right time of course. This time it has been 4 months since the last one. But the other thing is that they have a bit of trouble with his medication, especially in the morning. Which includes epilepsy tablets. Some times he just spits them out.!! x
Just noticed your comment about spitting out medication. Is there not a liquid form he could have?

With all he is putting up with it seems a small matter for the NHS to find a way of getting medication into him.
 

Casbow

Registered User
Sep 3, 2013
1,002
Colchester
Just noticed your comment about spitting out medication. Is there not a liquid form he could have?

With all he is putting up with it seems a small matter for the NHS to find a way of getting medication into him.
Apparently it is very expensive to have it in liquid form.!! I think it is a last resort.???x
 

Casbow

Registered User
Sep 3, 2013
1,002
Colchester
Yes that's quite true but if it is a question of no drug or a liquid one then I think they would support it.
Hi marionq. Yes you are quite right. I have not asked this week how the medication is going down. He took it in yogurt here at home without problems. But you are not meant to hide the medication in something else. It took a lot of persuading and a doctors permission for the home to be able to do that. I understand the reasons. But at the end of the day he loves yogurt and I have always said 'David here is your medicine' and I know he knows what it is as I had to start crushing it about 3 years ago when he was more un derstanding. Surely that is better than no medicine.
 

LadyA

Registered User
Oct 19, 2009
13,562
Ireland
I had to hide William's too. His life would have been an absolute nightmare without the anti psychotics. But his paranoia meant he didn't want to take any medication! Sometimes, you have to act in a person's best interests when they no longer have the capacity to make good judgments themselves.
 

Casbow

Registered User
Sep 3, 2013
1,002
Colchester
I had to hide William's too. His life would have been an absolute nightmare without the anti psychotics. But his paranoia meant he didn't want to take any medication! Sometimes, you have to act in a person's best interests when they no longer have the capacity to make good judgments themselves.
Thank you LadyA. I felt it was right. And the only thing to do.xxx
 

Casbow

Registered User
Sep 3, 2013
1,002
Colchester
Hello to you all. Just to give my latest news. David is settling well and I visit 4 times a week. Never leaving him without a visitor for 2 days running. Our dear little dog who we have only had for a year even though she is eight , has gone into Renal failure and I feel very sad about the fact that her life will be considerably shortened. She is not eating very much and has no energy. It is chronic renal failure which I am told is the worst kind.On the brighter side, my family came armed with far to much food yesterday, for lunch, for my birthday. I also had five bunches of flowers and just had enough vases for them. My birthday is in the week but it has to be weekend to celebrate, because of work and school.It was lovely to have them all together for the afternoon And the weather stayed dry and sunny. I hope you are all having a reasonable weekend.Love to you all. I will visit David today.xxx
 

LadyA

Registered User
Oct 19, 2009
13,562
Ireland
Aw, Casbow! You've brought tears to my eyes! What a wonderful post! And I hope you have a very happy birthday during the week, in spite of everything. I'm so glad that you and David have found this kind of peace, after all you've been through. xx
 

Grannie G

Volunteer Moderator
Apr 3, 2006
70,392
Kent
Hello Casbow

It`s such good news to hear how well David is settling. When I think of the heartache you had in making the decision!

Please tell the date of your birthday this week. It would be lovely to start a birthday Thread for you. I think it`s so important and some small compensation for not really being able to share it with David.
 

Casbow

Registered User
Sep 3, 2013
1,002
Colchester
Once again I thank you all for your kindness. My birthday is on 28th June but I don't do ages anymore. Just stay at 18.!!xx Saw David today and he was away with the fairies and in a happy place. He always smiles at me and looks pleased to see me but I know he just recognises me as someone who is ok but he has no idea who. He had his new glasses on. He twisted and broke his last pair. The new ones (sorted by the home) seem to be a bit stronger when I try them. I hope they are ok. He says they are but I don't think he knows what I am talking about. By stronger i mean of course the lenses. I would fall over if I was walking about in them. I told the staff in case he has a fall. Our glasses prescription is obviously not the same but I used to be able to look through his. Now I can't. Take care of yourselves.xxx
 

Casbow

Registered User
Sep 3, 2013
1,002
Colchester
Hi there. I am posting mainly to keep the thread going. Not to much to say. David no longer knows who i am. I visit to make sure he is being well looked after. And mostly I believe he is. I can only go by what i see and what the staff are like relating to him. I think he is happy in his own world. He is eating well and appears contented. My big problem is the fees. Don't know how I will manage. Its a bit of an ongoing problem.Love to all.xxx
 

LadyA

Registered User
Oct 19, 2009
13,562
Ireland
Hi there. I am posting mainly to keep the thread going. Not to much to say. David no longer knows who i am. I visit to make sure he is being well looked after. And mostly I believe he is. I can only go by what i see and what the staff are like relating to him. I think he is happy in his own world. He is eating well and appears contented. My big problem is the fees. Don't know how I will manage. Its a bit of an ongoing problem.Love to all.xxx
Can you get no help, Casbow? It's just horrific how such seriously ill people can have their care at risk because their spouse simply can't afford the fees! Imagine what uproar there would be if people with any other terminal illness were treated like this!!
 

Casbow

Registered User
Sep 3, 2013
1,002
Colchester
Its an ongoing problem LadyA. Still trying to sort it out. Trouble is everything seems to take so long. Not to mention the time spent waiting for people to be available on the phone. If all else fails I think they wait till we are both gone from this earth and take their money then. Hopefully it won't come to that. Waiting to hear if I can have pension credit. Told that takes between 3 and 6 weeks. So here I am trying to be patient.x
 

Casbow

Registered User
Sep 3, 2013
1,002
Colchester
Today a letter about Davids attendance allowance. They want to know how long he was in respite.?? Oh well, so now they are going to ask repayment of 4 weeks A.A. I cancelled it 8 weeks ago. Wondered when I got the bank statement why there was more money than I expected. Why does no one get anything right. I am feeling at an all time low. My visits to David satisfy no one but me. Since the last seizure I now know for sure that he has gone from our world and hopefully he is in a good place. I could be anyone and he cannot say anything that I can understand. Never more than 4 words and they don't make any sense.I feel for the first time that I am now really on my own. I feel so sad,so miserable and have spent most of my time today either crying or feeling totally empty. And now I feel selfish as I know without a doubt that there are so many of you suffering and trying to keep going despite the difficulties. No. Difficulties is to easy a word. It can be a nightmare looking after the people we love. When I look back at what we went through I wonder how I coped. I did what I did because I love him so much. just like all of you are doing. I hope you all get a good nights sleep. Love you all.xx
 

LadyA

Registered User
Oct 19, 2009
13,562
Ireland
Oh Casbow, I'm so sorry that things are so bad for you at the moment. At least you can know that you got your dear husband the care he needed, when he needed it. I'm just sorry you've been left with the struggle. Are you getting any support? With such a change in your husband's condition, I'm sure you must be feeling a bit abandoned, even though you understand that it isn't that at all, it's the awful dementia! Would CAB or Age UK be able to help you with sorting out the bureaucracy? Or could your son help? You must still be exhausted too, and I'm sure you could do with a rest. Do take care of yourself, and try and get plenty of sleep. xx
 

LadyA

Registered User
Oct 19, 2009
13,562
Ireland
Hang on!! Isn't "respite care" regarded as temporary? So wouldn't he have been entitled to Attendance Allowance during the period he was officially in Respite, before it was changed to him being in permanent care? Maybe it's different here, but William was in Respite for two weeks and then went straight over to permanent care, and I got Carer's Allowance until the date he formally started permanent care.
 

Grannie G

Volunteer Moderator
Apr 3, 2006
70,392
Kent
So many people think once the decision for residential care has been taken the troubles are over. Often there are more to come, as seems to be for you Casbow.

You do not deserve this.

Have you discussed your problems in detail with anyone who knows the system and may be able to offer more than sympathy.

AgeUK and CAB as suggested by Lady A would be a good start. There must be something you can do and I understand you may not have the physical and emotional stamina to explore solutions.

Perhaps you might start by phoning the National Dementia Helpline. They are very good to talk to and won’t put you under any more pressure.

You can contact our helpline by calling 0300 222 1122 or by email at helpline@alzheimers.org.uk.

Helpline opening hours:
Monday to Wednesday 9am – 8pm
Thursday and Friday 9am – 5pm
Saturday and Sunday 10am – 4pm
.
 

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