Begging to GO HOME.

[Rageddy Anne]

Thankyou Ellaroo, I'm glad your mum feels a bit better about having made her journey, and her own decision.
I should let my husband go when he says he'll walk home, but I'd have to go with him as we live on quite a dark country road, and he could stray into the woods nearby. And Going Home time is during the rush hour, so traffic is busy. Sometimes I get the car out and we drive round for a bit, but that doesn't always work.

 

[Rageddy Anne]

Good homes do exist Anne, they need searching for. Sadly because of our caring responsibilities most of us neither have the time or the energy to search every home in our area in order to find a good one.

My CPN helped me. He drove me round all the homes in the 2 hours my husband was with his agency carer. Is there anyone you know who can help you by recommendation ? Do you attend a carers` support group? Have you searched on line and looked at CQC reports?

It`s a nightmare of a task.

You're so right, GG, about the caring not allowing time for other things. It's Catch 22 isn't it?

Our CPN is, I think, overwhelmed by having far too much to do, poor girl. A lady from Alzheimer's Society introduced us to a nice young man with some time to spare who comes and keeps my husband company. So now, once a week I have a day off followed by a night when I can sleep uninterrupted at my son's. ( he's usually away on business, so I get perfect peace) There's so much to squeeze into those days but this week I'm going to look at another place, not far away, that looks promising. It had a positive report recently by the CQC. Fingers crossed.

It's strange how the minute you mention Care Homes, people assume you're thinking of permanent residency.....I'm hoping for some occasional respite, with residency a last resort but easier if he knows the people and the place. There's some subtle pressure to go for residency immediately, well meant I suppose, but not really what I want. I suppose they're worrying about me.

 

[Rageddy Anne]

The Care Home I visited felt like a nice hotel, and, subject to their own home assessment, it might be possible for hubs to have a nice little "holiday"! Perhaps a week, just to reassure him that he can relax even if I'm not right beside him, and to give me a real break.

They were so kind....I didn't think such places existed. We haven't had a holiday for ages, so we should be able to afford a week.

Fingers crossed that we are acceptable!

 

[disi]

The Care Home I visited felt like a nice hotel, and, subject to their own home assessment, it might be possible for hubs to have a nice little "holiday"! Perhaps a week, just to reassure him that he can relax even if I'm not right beside him, and to give me a real break.

They were so kind....I didn't think such places existed. We haven't had a holiday for ages, so we should be able to afford a week.

Fingers crossed that we are acceptable!

Hi Anne, just come on and read about the Care Home you visited. All my fingers are crossed that he will be accepted and you can have a real break, you so deserve it. Sending lots of hugs your way. xxxxxxxxxxxxxxx

 

[Grannie G]

Good luck Anne. You need a rest.

 

[Ann Mac]

Fingers crossed Anne - you need a break, hun xxx

 

[Samui]

After much soul searching on our part, my widowed mother moved into residential care about a month ago. It's a lovely small home, with 13 residents and the carers are wonderful. Before mum moved in, she lived independently and alone and was for the last 12 months or so, always packing to go home, and looking for boxes to pack things away in. Occasionally she had even walked back to her old house (it's local) and tried to get in. Now the care home manager tells me that, in the afternoons, she regularly wants to go home, or catch a bus to go home, and when we speak on the phone she (mum) demands that I go to fetch her. Unsurprisingly there's no reasoning with her and it's quite distressing dealing with her agitation and sometimes tears. Do you think this is likely to diminish as she settles in to her new surroundings?

 

[Rageddy Anne]

I wish I knew, Samui, but the manager at the nice Care home I visited recently said they had several people who want to go home, especially in the afternoons, and the staff were good at distracting them and going along with it. She said one lady packs her bags every day to go home, and the carers help her, and later on they discreetly unpack, and it happens again the next day....

 

[2jays]

Packing to go home won't last.... But whilst it's happening it feels like it's lasting for years....

This packing up stuff, it seems to me, is a part of dementia that's the hardest to deal with. We with logical thought trying to deal with illogical thought. Mum packed for one year, even though she always told me how much she liked this hotel she was living in. The packing seemed like it was an obsession she HAD to do, like scratching and itch.

Mum still packs things, but now rarely asks when she is going home. She's packing so she can scratch her itch.

Horrid time for you xxxxxxx


Sent from my iPhone using Talking Point

 

[Rageddy Anne]

There's no packing here, just demands and requests, ever more urgent, to be helped to go home. It's getting more frantic every time...

 

[Rageddy Anne]

Respiradone

We started with Respiradone, alternate days. Slight improvement at first I convinced myself, but then the Sundowning got worse. Companion carer forgot one day, and I forgot the next time. And when I visited a Care Home with a view to getting a week's respite, they weren't at all keen on Respiradone, so I discontinued it. And the Sundowning and agitation has got worse and worse.

So this afternoon, in desperation, I've given him another Respiradone. Now I'm hoping and praying the desperate pleading to go home will stop.

When the patient's distress is that bad, and you're on your own, theories become academic, and you'll try anything.

 

[Rageddy Anne]

After giving Respiradone, peace descended after about half n hour. The GP had said to try alternate days; and by mid afternoon on the second day the Sundowning was frantic. So I gave him.a Respiradone and waited, but nothing changed. In the end last night we had to go to bed early, and he fell asleep, probably exhausted by the anxiety and stress.

 

[Ann Mac]

Oh, Anne - my heart breaks for both you and your OH This is intolerable for both of you. The respiredone either needs increasing to a regular dose, rather than prn, or something different needs prescribing. You are going to end up collapsing if you continue like this, hun. Can you keep detailed notes of how it is, for just one evening, and get them to your GP, to try and stress how bad this is? And if your GP isn't able to come up with anything, ask for a referral to a consultant psychiatrist/specialist in dementia care. This current situation is so bloody unfair on you both, you can't go on like this

Sending you massive {{{{{{hugs}}}}}}}}

 

[Shedrech]

Hi Rageddy Anne
just to say my dad got really agitated and distressed in his care home so was put on respiradone - with another drug prn, in case he starts up, to catch it before he is too anxious. He is on a regular dose - which they tweaked several times, dose and time he takes it. At first I was very concerned (he swayed between being zonked and hyper so the 'improvement' took a while) - and just worried about him taking such strong meds (also changed from donepezil to mementine) - but he is more settled now, which is good for him as well as those around him.
It's all so difficult as individuals do seem to react differently to these meds - however, I just wanted you to know dad's responses.
I appreciate what you mean about having to try anything - I truly thought, one night, dad would have to be sectioned. Thankfully the home has pulled out all the stops to support him - but they have immediate contact to CPN etc.
I wonder if, with Ann Mac's idea of notes for the GP/consultant, you might try videoing on your mobile - I appreciate that is tricky in the heat of things - sometimes people can't grasp what they don't see for themselves, even the professionals.
Very best wishes

 

[Rageddy Anne]

THANKYOU, Ann Mac and Shedreck, you're so kind.

I have done some videoing on my iPad, but haven't been able to do anything yet because it's been 24/7 togetherness for nearly two weeks..... due to the illness of the only person who can help with real respite. Hubs is terribly clingy, must be physically close at all times, so he is in my face even when I'm on the phone
So I'm praying for the helper to be better tomorrow, so I can at least make some phone calls.

This reads like a terrible situation, which it is, sort of, but we do get out with friends and family, and have quite a good social life, except hubs is close by me all the time and very demanding of me, even in company. Sometimes I can't possibly go to the loo, as he tries to come in with me, or would panic if I left him outside. Very few really realise just how watchful you need to be.

 

[Grey Lad]

THANKYOU, Ann Mac and Shedreck, you're so kind.

I have done some videoing on my iPad, but haven't been able to do anything yet because it's been 24/7 togetherness for nearly two weeks..... due to the illness of the only person who can help with real respite. Hubs is terribly clingy, must be physically close at all times, so he is in my face even when I'm on the phone
So I'm praying for the helper to be better tomorrow, so I can at least make some phone calls.

This reads like a terrible situation, which it is, sort of, but we do get out with friends and family, and have quite a good social life, except hubs is close by me all the time and very demanding of me, even in company. Sometimes I can't possibly go to the loo, as he tries to come in with me, or would panic if I left him outside. Very few really realise just how watchful you need to be.

I hope you get some respite from this soon. You must be exhausted and your OH so frightened when you are out of sight. Hope you have a better day today. G L

 

[Ann Mac]

I too hope you have a better day today, Anne and that the carer is well enough to give you some support.

I don't have the 'clinginess', but increasingly, unless Mil is in bed and asleep, I'm finding that leaving her unsupervised, even just to nip to the loo, is becoming an issue, so I have a very slight inkling into how wearying and stifling it must be for you at the moment - I at least have a break from that issue when OH is home, and still find it hard going!

I really hope that the videoing provides you with a way to demonstrate to the consultant (and any one else who needs convincing) just how difficult it is for you - maybe they will then put a bit more effort into practical support for you xxxx

 

[Rageddy Anne]

. Helper can't come, still poorly. So just have to press on. Hubs has just bid me a courteous farewell, apparently he has other commitments and duties, so he can't stay.

But, on request he will help me decorate the Christmss tree, but only for an hour! So here goes...

 

[Essie]

Oh Anne, I do feel for you. Have I missed an update on the respite? Have they 'accepted' OH and given you any dates of availability etc. - apologies if you have posted this and I've missed it...

 

[Rageddy Anne]

Oh Anne, I do feel for you. Have I missed an update on the respite? Have they 'accepted' OH and given you any dates of availability etc. - apologies if you have posted this and I've missed it...

They couldn't send an assessor until tomorrow, but I've provisionally booked a week. Don't know what they judge on a home assessment, but his afternoons now are totally confused and frustrated, so he will seem to need constant attention. Maybe she'll look at the house to judge if we look as though we can afford the fees! Yikes!

Going solo with no respite, and my husband rapidly deteriorating before my eyes....I never imagined I could do this. But, we discover things about ourselves..........