Thought I was coping!

[DixonC]

Have added comments on other people's posts but now feel the need to start my own thread. John was diagnosed with AD 18mnths ago but had had been going to GP re. ? depression/anxiety for over a year before that. He began to change gradually as much as 8yrs ago. We have been plodding along as best we/I can, things are now becoming so hard. He was on Donezepril with no improvement, changed to Memantine, can't say that has helped much either. Agitation and anxiety really escalating so Trazadone added, he just seems to be coming more and more agitated and hard to deal with. He has started pretending to take meds then spitting them down sink when my back is turned. I really am struggling to cope on my own so, after him going missing from Tesco and the Police spending 2hrs looking for him I am accepting a CPN referral but I know he is going to be so annoyed about it he will be pleasant when she calls tomorrow but then I will have to deal with the backlash. I just need some support but feel I should be able to cope with this, we have been married almost 46yrs but I hardly know my lovely husband any more.
Don't mean to moan but I just want us to have at least some time without constant tension and conflict.
Going to finnish my glass of wine and go to bed now and look forward to another day of trying to be patient and avoid conflict.
Night

 

[jenniferjean]

I feel I'm too new to this to offer you any advice. But what made me comment was when you said "but feel I should be able to cope with this". I think we all need as much support as we can get in order to cope with this awful condition. It's horrible to watch as our loved ones change before our eyes.

 

[Casbow]

Hello Dixonc. I have to ask you if you have been dealing with 8 years of slow decline dementia on your own. There is help out there. Are you in touch with Alzheimers Society or Age concern. They will come and see you and find out what kind of help you could be offered. Maybe a couple of days a week he could go to day care. And there are services such as Crossroads that will sit in with him whilst you have a bit of free time. Nothing is perfect and it takes a bit of time to set things in place but you sound like you need some support. Do get back to us and let us know how you are getting on.x

 

[Grannie G]

Hello DixonC

John was diagnosed with AD 18mnths ago but had had been going to GP re. ? depression/anxiety for over a year before that. He began to change gradually as much as 8yrs ago. We have been plodding along as best we/I can, things are now becoming so hard. ............................Agitation and anxiety really escalating so Trazadone added, he just seems to be coming more and more agitated and hard to deal with. He has started pretending to take meds then spitting them down sink when my back is turned. I really am struggling to cope on my own so, after him going missing from Tesco and the Police spending 2hrs looking for him I am accepting a CPN referral but I know he is going to be so annoyed about it he will be pleasant when she calls tomorrow but then I will have to deal with the backlash.

All the above is exactly what happened with us but you will see I have deleted the Alzheimer`s medication . It didn`t agree with my husband . He was diabetic and that was the medication he threw out of the toilet window or hid in pyjama pockets.

I used to see our CPN in the kitchen and told my husband he was visiting me. It worked for us and the CPN proved to be a wonderful help. If you have a sensitive enough CPN it might be worth suggesting.

When anyone came , at this stage of my husband`s dementia he would walk out of the door so I had to see them by myself. My husband accused me of being a drama queen and wanting attention.

I hope you can get something sorted. It`s good you started your own Thread, all your replies and support will be in the one place.

 

[DixonC]

Thanks so much for that, we live in North Wales our nearest family are in South Yorkshire where I am hoping to move back to. We have friends here but nobody I can ask too much of. Hopefully the CPN will be able to help I will also contact Alzheimer Society, I do need a break, have not been out on my own since last July!
So thanks again and I will let you know how we get on

 

[Philbo]

Like casbow, we have a local "branch" of Crossroads Care. Their local guy (an ex NHS psychiatric nurse who went on to study for a degree in brain science) was extremely helpful, spending a few hours at our home. He listened very carefully to understand how dementia has affected my wife and myself and explained how the disease affects the PWD's faculties. He provided a shed load of information about what services, service providers were available, plus how to get things like attendance allowance, council tax reductions and blue badge etc.

Crossroads do provide 3 hours respite care a week (someone to come and sit with the PWD) but the waiting list is around a year! As we would be self funding, adult SS don't really want to know.

After 3 years since my wife's diagnosis, I am getting to the stage where I will soon need some respite (not had any up to now), so I shall be scouting around to find the best solution.

Unlike DixonC, I don't really have any of the conflict issues (my wife went quickly past any such early tendencies) and she seems very happy most of the time. The major issue for me right now is dealing with the increasing episodes of incontinence, which is starting to affect us getting out and about. I have to plan things carefully, as not many establishments have suitable disabled facilities where I can assist her.

Best wishes to all you carers out there.
Phil

 

[Casbow]

Hello Philbo. If you are self funding there are lots of companies that provide home care. From a few hours to maybe a whole day. I suppose whatever you can afford. It might be worth looking into it. The incontinence is a huge problem if you want to go out. My husband has bowel problems and I cannot even begin to workout when he will go. I keep a chart and he has lactoluse and fruit and veg and fibre but I cannot get him in a routine. I think it is the dementia causing it. He has no idea to go and sit there as a habit. What joy.!!! Wish you well.x

 

[DixonC]

Well the meeting with CPN went well, John threatening not to see her but very pleasant once she arrived, talked rubbish as per usual, but pleasant!
She is referring us to SS and had some useful suggestions including contacting Crossroads, but sounds like a long wait for them.
She is also contacting our GP to request meds are given in liquid form, sounds promising, hopefully more chance of them being swallowed in that form.
So all in all a worthwhile process, so far. At least it feels like I have somebody there to offer some help.
Thanks again for all your support and advice.

 

[Grannie G]

That`s good Dixon.

 

[Agzy]

Hello Dixonc. I have to ask you if you have been dealing with 8 years of slow decline dementia on your own. There is help out there. Are you in touch with Alzheimers Society or Age concern. They will come and see you and find out what kind of help you could be offered. Maybe a couple of days a week he could go to day care. And there are services such as Crossroads that will sit in with him whilst you have a bit of free time. Nothing is perfect and it takes a bit of time to set things in place but you sound like you need some support. Do get back to us and let us know how you are getting on.x

Hi Casbow, as with others I too struggle to cope but have found the local Alzheimer's office most unhelpful and non communicative having promised me a place on a course for carers but in spite of repeated visits and phone calls they don't get back to me. Fell,really let own.

 

[Trisha4]

Hi Dixon. I can identify with much that you say. I have found Alzheimer's society to be very supportive and it is very active in parts of Yorkshire. We are in East Yorkshire. Seek and accept any help you can. Many of us think we can cope but struggle as things progress.


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[Philbo]

Hello Philbo. If you are self funding there are lots of companies that provide home care. From a few hours to maybe a whole day. I suppose whatever you can afford. It might be worth looking into it. The incontinence is a huge problem if you want to go out. My husband has bowel problems and I cannot even begin to workout when he will go. I keep a chart and he has lactoluse and fruit and veg and fibre but I cannot get him in a routine. I think it is the dementia causing it. He has no idea to go and sit there as a habit. What joy.!!! Wish you well.x

One of our group of friends, in our local pub, manages a care home and she has kindly said that if I want a few hours respite, I can always take my wife in there. A couple of the care workers there are also part of our group, so my wife would be in familiar company. They really make a fuss of her in the pub at weekends so it is an offer I may take them up on, when I need to (though I really don't like imposing?).

Phil

 

[DixonC]

Thanks Trisha4, it is good to know Yorkshire has an active Alzheimers Society, I will certainly contact them when we move back there, I am about to contact the Wales branch but it is not easy making calls like that as my husband gets very annoyed with me when I speak to anybody about how things are, although he is nothing but charming at appointments both at home or at the Memory Clinic!
Looking forward to getting in touch and hoping for some support.☺