Like a Hyperactive toddler...

[Rageddy Anne]

Rob was heavily sedated when I saw him, roused himself just enough to eat his lunch, but then subsided again into a semi torper. So I thought his sedation was too much, but then he became more wakeful, and was full of worries and angry outbursts, so perhaps the sleepiness is the better option.

The revised medicine regime is only two weeks old, and I've been told his system will take a while to adjust to it, so instead of agitating, perhaps it will be better to be patient and see what happens. He doesn't really recognise me any more, although he uses my name, but now I think that's more a word than a name, like " help!".

It doesn't help that the lift in the care home is constantly causing difficulties breaking down. Because it's a listed building they can't add a new one that would involve changes to the exterior, but the current lift is old and very unreliable. The owner says a new one would have cost less than all the repairs...

Rob's room and bathroom are downstairs, in what was probably once the cellar, but the ground slopes so he also has windows and a door into the sunny garden. It's a very pleasant place to sit quietly and listen to music, but with the lift not working and he now has difficulties negotiating the stairs, going down there during the day is difficult. Frustrating.

 

[Grannie G]

Sometimes sedation is the lesser of two evils Anne. It`s a sad state to be in but far better than agitation and torment.

 

[Rageddy Anne]

Thank you Sylvia; you're right, anything must be better than Rob being distressed. I thought they'd hit on the right balance, but the last couple of times I've been to visit he's been both sleepy and yet also distressed. Yesterday he was weeping and saying he was frightened, and we've had another episode of impacted constipation that makes him frantic....

Another factor is the Care Home lift has been out of action for ages, so I can't get Rob back to his very nice room for some peace, and to use his own bathroom.

I try really hard to stay positive, but it's hard to see him so distressed, and because family are understandably busy they don't really know just how bad it is. And in some ways I'm desperate not to ask too much of them, as I've seen on here just what a burden we oldies can be for the younger family members who are themselves terribly busy. I really need some help with sorting out the finances which Rob left in such a muddle, though luckily a friend has recently introduced me to a lovely chap, semi retired financial advisor, but of course he must be paid, and funds are dwindling.

But, enough whinging, it's going to be a beautiful day, we live in a gorgeous place, and there are so many less fortunate people in the world...I get very cross with myself full of self pity......

 

[Jinx]

Anne, I've just been catching up and feel so sad for you and Robert. It must be so distressing that it doesn't seem possible for the medics to achieve a balance between Robert being either over-sedated or very distressed and frightened. I suppose it may take a while for the new drug regime to settle, I hope things improve.

The lift being out of order must be causing the staff all sorts of problems, how on earth do they cope?

Have you tried contacting Age Concern or Citizens Advice to see if they can put you in touch with a financial adviser or give you some advice. Might be cheaper than the financial consultant.

you're often in my thoughts, hope today is better and you can enjoy this lovely sunshine. Big hugs. xxx

 

[CeliaW]

Jinx has made some good suggestions Anne, here's another that might help and is free.

https://www.moneyadviceservice.org.uk/en

Take care xx

 

[RedLou]

Anne - just popped into say there is nothing self-pitying about you and to send you a large hug.
I don't know what sort of financial stuff you've got to sort out, but when it comes to tax returns etc. a few years back I went on a couple of courses run free by HMRC in order to file ours and avoid accountancy fees. I would recommend them.

 

[Rageddy Anne]

Thank you for suggestions, must get my act together, but keep falling asleep...though wakeful at night,as usual.


JUST SO VERY TIRED! Maybe see the GP, bu they're so overstretched here, ( this village is too popular with retirees) that some think there's no much point. BUT, YES, THATS WHAT I MUST DO...

 

[Izzy]

I do hope you get to see your GP Anne. You sound worn out.

 

[disi]

Thank you for suggestions, must get my act together, but keep falling asleep...though wakeful at night,as usual.


JUST SO VERY TIRED! Maybe see the GP, bu they're so overstretched here, ( this village is too popular with retirees) that some think there's no much point. BUT, YES, THATS WHAT I MUST DO...

Oh Anne, so very sorry to read about you and you poor Rob. I do hope they will be able to get his meds. right it's such a worry for you. And it sounds as if you are really run down and must go to the doctor as soon as possible. Sending special hugs and lots of love, Diana xxxxx

 

[Kjn]

Hi RA

I'm sorry to see Rob still hasn't got a balance in his meds yet, tbh my dad didn't either as was hopeless on haloperidol and rispiridone . In time he has calmed right down, just progression. They will get there ..It's very long winded sometimes trying to find his balance as some days he may not be so agitated needing the meds so ends up more sedated. My dad was just given something 'as and when' to smooth his aggression period.

My biggest concern though is your health, you are burned out as my mum was ... Are you still spending most of the day with Rob ? The home really needs to be able to manage him and get your health on track. I'm worried about you Hun . Please look after yourself, you know where I am for a chat.
I know the family is busy but I think crisis point has been reached and you need to reach out to them, you arnt a burden and I'm certain they would rather help than see you in hospital .
I hope you get finances sorted ASAP as that'l be draining you too, talk to your son just to air any concerns initially.

Thinking of you xxx Kerry

 

[LadyA]

Anne, at my most stressful time when I really had trouble sleeping, I took to herbal remedies, as I can't take much in the line of medication. I took Kalms tablets during the day, regularly, and then at night Melissa Dream and Rescue Night remedy. It takes a little while, but it did work for me. And it didn't leave me groggy during the day.

 

[Rageddy Anne]

THANKYOU Kerry for your concern...I really don't think our two sons have any idea....They think I'm indestructible.. One has an incredibly demanding job, and the other is looking for one, having taken redundancy a couple of months ago.

I've been paying a lovely chap to visit Rob two days a week, but most other days I've spent time with him, and because his Dementia's progressing and his GP is trying new meds it's been stressful.

But today he wasn't agitated, so I hope this is an improvement. And I have a blood test next Friday, so maybe I won't be so tired if I get something to help.

I plan to spend the rest of today in the garden...should be therapeutic....xx xx

 

[Rageddy Anne]

I think the new meds regime is beginning to help! Rob still gets worried, but not as much, and in the last couple of weeks his smile has come back! He used to be such good company, full of jokes , and we're seeing the occasional glimpse of that again...

He's sleepier, but it's a price worth paying for seeing him feeling a bit more relaxed.

Fingers crossed.

I wish carers were better rewarded, they're so good in this care home, unlike the previous one...here, all the carers are engaged with residents all the time, and always smiling or singing or joking....

I'm just going out, because they're going to make a circle for singing

 

[cuppatea]

Good to hear of a little upturn, hope it is maintained! Is your blood test tomorrow? Presumably you then have to wait to see the GP, hope that's not too long. Hope you are getting somewhere with financial stuff, I too had a nightmare mess to sort out. I laid everything I could find out on the dining room table, sorted into piles, then prioritised the piles of papers and worked through them. It took months, starting in September, I set myself the goal of clearing the table by Christmas and achieved it. I also bought a garden incinerator - like a metal dustbin with a chimney hole in the lid - lots of satisfaction in getting rid of stuff. Remember to look after yourself x

 

[Grannie G]

It`s such good news Anne to hear the torment is easing both for you and Rob. It was one of the arguments I put forward for Dhiren to receive medication, to ease his anxiety even if it did make him sleep more and eventually affect his mobility. Anything was better than torment.

I agree with you about good carers. I believe the really good carers, whose work is vocational, are worth their weight in gold, never mind minimum wages.

 

[RedLou]

Anne - delighted to hear of the improvement.

 

[Rageddy Anne]

It's a rocky road we tread, dealing with this accursed condition. Looking back at the title of this thread I kind of wish Rob could still be the hyperactive toddler he was then. His GP at the new Care Home has prescribed him drugs to help Carers deal with his personal care. Now he is often inert, sitting with his head hanging and his eyes closed, and looking hopeless. He has lost weight, and more or less lost the use of his legs, and yet he still uses the very last of his strength to resist anyone trying to help him shower and dress...
He can muster a few words, but they are random and rarely add up to a coherent sentence.

The only thing he consistently clings to is my name, and yet I think that's more a word than a name now...meaning something like " help!"

I'm relieved, and don't feel in the least guilty that he is no longer at home, but in a Care Home where they've come to know him, and can cope. I worried about what he would be facing if I suddenly became ill, and now I know he would be spared any drama. My health is now giving a little cause for concern, though I hope all will be well.

I'm not looking for sympathy here, but just want to point out that there are times when moving someone into a Care Home isn't a betrayal, to be avoided at all costs, but the right thing to do.

 

[Kjn]

Hi RA

Sad to hear Robs decline and with need of meds for care, it's hard to see, completely understand how you feel re care home being safer for him now. It does take some time to get used to but does relieve some of the pressure on us.
Thinking of you on this rocky road and do take good care of yourself xx K

 

[Grannie G]

Hello Anne

It wouldn`t surprise me if your health worries, whether you had them before becoming a carer or not, have been affected by your caring worries.

I do hope whatever worries you have are manageable and there is a solution. It seems cruel for you to have no peace of mind even now Rob is so well settled.

 

[nae sporran]

Hope your GP can help you Anne, it's been a hard year for you. Good to read Rob's home have some carers you trust though.