today was just awful

[chip]

I have had big problem today. First of all my husband got up at 5 am. His mood was not good. Carer arrived at 11 am he went even worse. He has not settled all day he has never stopped his mood got worse, he has went from tears upset to very angry then calm then back to the very angry. His moods were all over the place. He also was very confused. He will not let me out of his sight and follows me everywhere he wants nobody else exept me. How do i get him to accept the carer he is a really nice chap. I have been fighting for so long to get help and know i have it he goes crazy with them. What do i do ? He is on Quinetapine. He settled down as soon as the carer left only got the confusion tonight.

 

[Natashalou]

oh dear

how dreadful to have fought to get help and then this to happen but it sounds as if the carer is new arrangement so hopefully it will improve as your husband gets used to him?
Almost like when a child gets a new nanny..when mine were small there was a regular change of nanny, all very nice and competent but it always took them a few days at least to get used to the new nanny and in that time got very clingy towards me.
Perhaps if you were just to go out for a hort while and gradully increase this it might help as well?
I do hope things have a positive outcome for you

 

[Brucie]

Hi Chip

He is confused and frightened already, as you realise.

Then, as he would see it, you put him with a strange man and expect to leave him to it. Perhaps you might never come back, in his mind.

None of which helps your situation - nor indeed, his own, but that's dementia for you...

My Jan never settled with the person who came to be with her, on the few occasions they were able to do that. Jan reckoned they only came to steal her food, and was icily polite. Her eyes showed huge fear.

I was relieved when they stopped coming.

This may sound strange, but, as a man, I think I'd get on better with a strange woman being with me. I'd be more likely to make polite conversation.

Obviously men and women have a natural tendency to behave differently depending on the gender of the person they are with.

I've always respected women more than men, intellectually and in terms of capability, and have felt more at home with them [gives Nina a huge laugh!].

You may not have the choice, but maybe try a different gender of carer?

 

[chip]

I tried to disappear but about the house he would always go looking for me. Wish i could just go out have a bad leg which i go to get checked out on Wednesday. The carer has been here 3 days first two went ok but today was just awful. Hubby even threatened him and me and was going to hit us. Carer is back tomorrow so fingers X'd

 

[DickG]

Hi Chip

What a dreadful day you have had. I have had a similar problem as you but not as bad and without the anger. From the first time we had a carer Mary follows me around and even stands outside the loo! When the carer is due to stay I get an intense period of questioning and anxiety which I find difficult to cope with.

I soon realised that the situation is similar to that of a child going to school for the first time and I had to harden my heart and walk away and leave her with the carer. Two years ago it was not easy and it is still not easy today but what is the alternative? - to slide slowly down hill until I cannot care for Mary.

Sorry I don't have an answer, I am not even sure there is one.

Hugs

Dick

 

[sue38]

Hi Chip,

I think the others make good points. I remember when my niece and nephew were young and I would pick them up to babysit. They would scream blue murder in front of my sister and brother-in-law but by the time we got to the end of the street they were happy as larry (out of sight out of mind?).

When you are able to get out - bad leg permitting - your husband will have to trust the carer, but maybe cannot or will not do so when you are there.

Clearly you need that break. I hope tomorrow is better for you.

Sue

 

[chip]

Well no better today carer has LEFT but he is coming back tomorrow and is phoning to make sure all is ok here. The day hospital as been phoned he is going tomorrow and they are getting the doctor to him. He is calm since the carer left. We have found out he only wants to stay in the house with me. I now can't go or do anything. The day hospital said to me think you should think about long term care now. I feel trapped his meds aren't right, i can't afford long term care, been told care homes is not proper care they are only in it for the money the same as social services are. What am i to do? I have saved the country by having no choice but to care for him with very little help or respite. He is just out of hospital was in 3 weeks to get the meds right yet nothing has been changed he has been home 12days Why was the meds not sorted out? Why was the help i could get not started before so this wouldn't happen? He is good with people he knows. The Social Worker is coming next week should i ask her why things weren't done as it should have been. A worn out Chip

 

[Grannie G]

Dear Chip, ask whoever you want, whatever you want. You must try to get your husband the help he needs.

Do you think he`d accept care at a day hospital, better than care at home? If he went for day care at a day hospital, the transport would pick him up and he might feel safer thinking he`d left you at home.
Also, there`d be more people there so it might be less claustrophobic for him.

Whereas if he has a carer at home and sees you go out, he just might think you won`t be coming back, and he`ll end up living with the carer.

I might be getting it completely wrong, am just trying to think of all the insecurities.

But do ask the SW what is going wrong. You have had such a hard time for so long, no wonder you`re worn out.

Love xx

 

[Gromit]

Hi Chip

So sorry to hear things are so bad for you at the moment. You have had a rough old time of it - especially when he was in hospital too - I recall you having to fight then too - so I am very annoyed to hear that you went through all of that and the meds weren't sorted out. I would definitely ask the SW about it. You need help and fast. Its a pity that the carer isn't able to help you more, but who knows what anxieties go through the mind of an AZ sufferer. Keep on trying, as you do need some time to yourself. Things may start to get better.

I hope your leg isn't causing you too much pain, that's all you need right now.

I wish I had some good advice to give you - though as you know I don't have any experience of this (dare I say yet). You have been very good to me and many others by passing on your words of wisdom - so I hope you get the help you need from the authorities and also here on TP (the latter is a definite!).

Take care.
Thinking of you.

Alison
x

 

[chip]

The carer has phoned he wants to help he has toldhis boss and wants her to contact the social worker as well to push things. He said we will see how it goes tomorrow when he gets back from the day hospital. We are going to take him out in the car to my dad's house to see how that goes to try and show him that its ok to be out. I am at my wits end seeing 4 walls.

 

[Margarita]

Could you not ask if they run a Day care Centre that support older people to remain in their own homes they offer a comprehensive program to meet the needs of they clients . they would even give your husband a Key worker . its run like a care home , but they come home at 4pm

The social worker assessment needs to be completed , so they can make sure that they provide the right support to the people who need it most.

Sounds like your husband could do with that , rather then putting him in to care home , that you say you can't afford .

My mother finally going to one day center run my SS , but I had to do a hell of a lot of pushing to get her into one , she going on Thursday with me to see it , then they are offering 2 days & 2 days at AZ day-center .

But SS day-center is run 7 days a weeks and take people with dementia or not

 

[Westie]

Chip,

Sounds like a great carer to go to the trouble of ringing his boss to try and sort things out for you. The planned trip out tomorrow sounds like a good idea and maybe things will get a little easier on each visit.

Hang in there.

 

[Margarita]

and maybe things will get a little easier on each visit

yes thats right I remember , when my mother first started having a carer in , she did not like it .

I found it more helpful when she went to AZ day-center , but every one different .

does the carer just come around to sit with your husband while your go out ?

Or is it for helping you wash your husband ?

as I only got a carer in to help me wash my mother , not sit with her as my mother like going out a lot , she did not even like the idea of day-center till she got use to it .

It was all a big struggle with her to go anywhere that I was not going as she always wanted to be with me

 

[Rhoda]

Hello Chip,
Sorry to hear you're having such a frustrating time. I'm new here, so this may sound silly to you, but have you phoned the Alz helpline for Scotland to ask about finances for care home? Their number is 0808 808 3000, 24 hours (to save you looking it up). I was advised on here to phone them (the English version for me) about my financial care worries. I have done so this morning and they were really helpful and reassuring and the woman I spoke to was very nice and comforting too.

Look after yourself, you're very important!
Love, Rhoda

 

[chip]

The early onset run a club he is refusing to go its only one day and they are thinking about canceling him as he is refusing now to go. There is no other club or anything forhim to go to as he is 53. Well the visit to my Dad ! Going in the car he was good and at my Dad's was good well good for 2hrs then he very suddenly went agitated as was threatening my Dad and me. My son and me got him into the car and the drive back home was a nightmare he was kicking the seat trying to take his seatbelt off got the shoulder strap over his head, his arms were well he was trying to fist me and he was shouting we had this until we got half way down our street then he recognised and said thats it. Another bad day Day hospital phoned they cant get a hold of a doctor! was told im on my own till tomorrow, and tomorrow i have an appointment about my leg. Will be glad when this week is over

 

[DickG]

Hi Chip

It would appear from your postings that your husband is suffering from extreme agitation which needs to be addressed by your doctor. My experience is that sorting out agitation is not a good experience but it would be better than your current situation. It took 6 months for Mary's agitation to be eliminated but it only took a day for the agitation to be addressed by medication and for me to feel that there was room for modest optimism.

Remember Chip, you are a very important partner in this dreadful AZ world, do consider your own needs as they are as important as your husbands.

Dick

 

[Nell]

The day hospital said to me think you should think about long term care now. I feel trapped his meds aren't right, i can't afford long term care, been told care homes is not proper care they are only in it for the money the same as social services are. What am i to do? I

Dear Chip,
I'm so sorry you are feeling worn out and can only imagine how hard it all is for you.

I am concerned about your comments that:
1) I can't afford long term care
2) Told care homes . . . are not proper homes . . . only in it for money.

1) I'm SURE there must be a way around the money problem. Not everyone in care homes could possibly have money. Here in Australia our systemns are probably different to your's in UK, but no-one is barred from a care home due to lack of money. Once people are in a care home no-one knows if they paid to come in or not.

2) I know from personal experience that care homes can be very good. My Mum is in one. While I'm sure you are right and some are only in it for the money, there ARE good ones out there. Many people on TP have found good care homes for their loved ones, so don't give up on the idea for this reason.

I do know how hard it is to decide to go for long term care, but in the end it can be better for everyone. In the beginning it is traumatic, but most people settle down.

At the end of the day, you can't care for him if you are totally worn out - so please look after yourself as well. Thinking of you and sending you caring wishes at this very hard time.

 

[Margarita]

The early onset run a club he is refusing to go its only one day and they are thinking about canceling him as he is refusing now to go.

Just wondering , have you gone along with him , stay the day with him or gone with him stay a while then left .

 

[chip]

Had a phone call the quetiapine is being upped to twice a day to give it a try. They day hospital has noticed he can be ok for a short while then gets agitated. The quetiapine only lasts on him for 4 hrs so morning and evening is covered. The doctor is checking him out on Friday at the day hospital. So the next few days will see. The change in him the last three months has been dramatic. This has all happened since he had the seizure.

 

[Grannie G]

Hi chip. I sincerely hope the increase in the drug will help. Fingers crossed.

Love xx