nightmare update

pamron

Registered User
Jun 20, 2008
7
0
Nottingham UK
Another day

Hi Barb and Carole

Thanks for your replies.
I have just got up and Ken is still asleep. Came here to see if anyone had noticed my post and find two lovely replies.
I still feel very low but it is another day and hopefully I can face it with love. We do still occasionally have a laugh together about something and he loves to remember the earlier days so it is not all bad.
As I said he is 80 and I am 75 but unfortunately I too have heart problems. I have just recently managed to get a gardener to come in once a week and tidy the garden up a bit so that is one less worry.
I know you all have your own problems too so I know I shouldn't feel so sorry for myself but it has felt better to just put it down on here.

Will keep in touch thanks.

Pamron
 

Lynne

Registered User
Jun 3, 2005
3,433
0
Suffolk,England
Hi Pam

I'm glad you've found Talking Point (TP) to be able to release to. It's very difficult when a dementia sufferer is still lucid and observant, so that you don't even have the 'luxury' of pouring your heart & some of the distress out to someone on the phone. [Have just looked at that sentence & mentally kicked my own backside :eek: - EVERY stage of dementia is 'very difficult', what a stupid, blindingly obvious thing to say; sorry!]
PamRon said:
I have even considered leaving him to his own devices and driving away for good. That sounds terrible doesn't it?
Well it sounds like I have felt about a thousand times, if that's what you mean:cool:. And if there was a refuge from the stress and pain of looking after our loved ones (even when they resent our care) I bet it would be so crowded with TP contributors that you & I wouldn't be able to get in! :eek:
Please Don't feel guilty about how you feel; you are under enormous strain, and nothing in normal life prepares you for this.
Extreme and unthinkable pressure - yes, mental torture - will produce extreme emotions & unthinkable reactions.
I can't take them away from your mind, but I hope that by reading other threads on TP you will realise that the guilt-monster is an enemy we all wrestle with.
There are more of us, so :p :p :p to him!

Best wishes
 

Skye

Registered User
Aug 29, 2006
17,000
0
SW Scotland
Dear Pam

I've just read your post, and you sound so desperate. It's hard, caring for someone 24/7, I know, I did it until last September when my husband went into hospital and from there to an EMI unit.

I wonder if you get any help? You cannot cope with this on your own, especially as you are not well yourself.

Do you have carers to help with your husband? Have you had a carers' assessment to enable you to have some respite? I realise that that's not easy, when your husband has a temper, but you do need something for you.

Are you in touch with your local branch of Alzheimer's Society, and Princess Royal Trust? If not, please ring then and ask for their advice. I'm really worried about you, you sound at the end of your tether.

Please post back and let us know how you are getting on.

Love,
 

pamron

Registered User
Jun 20, 2008
7
0
Nottingham UK
Hello Lynne and Hazel
Thank you for your kind words. It does help to be able to 'talk' to others that understand the situation.
I have had no help so far with care because he doesn't yet need any help with pysical things like dressing,bathing (although he is not very willing to shower as often as I would like - he always says he has recently had one) eating etc., but the thing that also upsets me is that he doesn't want to DO anything. If I suggest going for a walk or a pub lunch it's all to much trouble but then he complains about being 'stuck in the house'. He was/is an intelligent man and this lack of reasoning ability is also distressing.
I have considered contacting the Alzheimers Society Branch in Nottingham but again have problems trying to make a phone call without him listening. That is why I turned to this forum and I am so glad I did.
We have had two more ranting and raving episodes today re me hiding the keys and not letting him drive but I managed to keep a bit calmer so far. I do find this distressing because it is such a contrast to the man I knew who was a happy person with lots of interests.
Phoned my son and asked if we could go over this afternoon (He lives about 50 miles away) and also asked him if he would have a word with his Dad about the driving - as he is a Police Inspector perhaps Ken will accept it from him. That is if he remembers five minutes later.
Realised whilst making the call that Ken had again picked up the extension but he made no comment on what he had heard so I left it.
At least if we go over there it will get us both out of the house for a while but I am now waiting to see whether he will accept that if we go I have to drive.

Another long post.
Sorry

pamron
 

Skye

Registered User
Aug 29, 2006
17,000
0
SW Scotland
Hi Pamron

I hope you get your visit, and that you both enjoy it. It will do you good to have someone to talk to.

I have had no help so far with care because he doesn't yet need any help with pysical things like dressing,bathing (although he is not very willing to shower as often as I would like - he always says he has recently had one) eating etc.,

There is help you can get at this stage. You can have someone to come in for a couple of hours every week, either to sit and talk to your husband, or to take him out for a while.

There are also day centres where he could go for perhaps one day a week to give you a break. You need this time to yourself, particularly at this stage. I know I got them when John was at thast stage, and it saved my sanity.

Perhaps your son could make the initial calls for you, and ask for someone to visit, or make an appointment for you to go to the centre?

Do give it a try, it really is a life-saver.

Love,
 

helen.tomlinson

Registered User
Mar 27, 2008
541
0
Hello Pamron

I remember when my husband was facing the fact that he was not allowed to drive anymore. It took him quite a while to adjust to the situation and he was not very happy about it!! I live in Nottingham too and yesterday I went to my first carers meeting held by the Alzheimers Society and it was really good. The lady, Julia, who runs it was the first person to come to visit us and she has been so supportive and very informative.

One suggestion that I could make is that you think about investing in a mobile phone. That way you might be able to have a little more privacy;)

Love Helen
 

pamron

Registered User
Jun 20, 2008
7
0
Nottingham UK
Hi Hazel

Thank you I did enjoy my visit. It was lovely to have a 'normal' conversation and although Ken didn't join in much he did laugh a few times at things said and he has been much calmer since we got home.
Quote
"There is help you can get at this stage. You can have someone to come in for a couple of hours every week, either to sit and talk to your husband, or to take him out for a while."

Re the above. I don't know whether he would take kindly to a stranger coming to the house to 'sit with him' but it would certainly be a good idea from my point of view.
How and where does one find out about this sort of help?

Helen

Nice to hear you are from the Nottingham Area if I contact the Alzheimers Society and join the carers group we may even meet.
When and for how long are the meetings as I cannot leave Ken alone for very long. I suppose I would have to get Hazel's suggestion in place first.
I do have a mobile phone but have only ever used it for emergencies and hadn't thought about using it to get some privicy. Great suggestion!

You can probably both see that I am feeling more positive now and that is down to all you great folks for listening when I needed it so.

Love

Pamron
 

charleyfarley

Registered User
Mar 28, 2008
17
0
surrey
Hi Pamron

Just a quick post to say I am glad that you seem to be feeling a bit better today and seem more positive. It will have helped having a nice drive out to your sons and enjoying their company it takes a bit of pressure off you. Hope you take Helens advice and go to the carers group, it would be nice if you two did meet up and become friends, love Carole xx
 

Lynne

Registered User
Jun 3, 2005
3,433
0
Suffolk,England
Hi Pam

When and for how long are the meetings as I cannot leave Ken alone for very long. I suppose I would have to get Hazel's suggestion in place first.

I don't know how local Alz. Soc. groups work in other areas, but ours has Heartsease meetings once a fortnight for both carer & 'caree', so we go together.
Activities on offer (in local community centre) are darts, pool, basic handicrafts, bingo, slide shows and talks on various subjects. Plus the usual tea/coffee & biscuits, and general chat.

Mum was surprised to find she already knew several other people there from days gone by, which has encouraged her to go again. They are very good for combating the isolation so many of us and our loved ones 'fall into'.

Best wishes
 

helen.tomlinson

Registered User
Mar 27, 2008
541
0
Hello Pamron

The meetings are once a month and the next one is Friday 11th July from 10.30 a.m. to 12.30 p.m.

I can leave Alan for that space of time but I think most other people there had to have a carer in whilst they attended the meeting. They had been attending the meeting for quite a long time (some of them) so they must feel it worth the time. It was my first meeting so I don't know very much at all apart from the fact that it was very welcoming, supportive and informative. We are bound to meet if you attend too - that will be nice.

I think Julia, from the Alz.Soc. told me that in Nottingham there isn't a waiting list for Crossroads so if you ever needed a sitter it wouldn't be as difficult as it is in some areas.

Love Helen
 

helen.tomlinson

Registered User
Mar 27, 2008
541
0
p.s. Pamron

Re the above. I don't know whether he would take kindly to a stranger coming to the house to 'sit with him'

I forgot to mention that it's the same for Alan but because I know I will need this facility in the future, I have started having people come in to see 'both of us' so that Alan can get used to it. At first he was not at all sure but now he's getting used to strangers coming in. First it was Julia from the AZ Soc., then the Occ. Therapist, a social worker and someone else but I can't remember who:eek: Alan didn't know why they'd come anyway but I think a slow introduction into a completely different way of life is better if it's possible to do it that way. I really think if I said "right I'm going out for a couple of hours" and left him with the OT,he would now feel a lot more comfortable.

Love Helen
 

Skye

Registered User
Aug 29, 2006
17,000
0
SW Scotland
Pamron, to get a carer, you could try ringing your local Crossroads direct, in some areas they will take direct bookings, but you have to pay.

In other areas, you have to go through SS (carers' assessment), and you may or may not get the service free. It's always worth having the assessment anyway.

I can highly recommend Crossroads, the manager will come and talk to you both, and try to match the carer to the interests of the person, so that it becomes something to look forward too. Johnloved art, and they found us a lady who brought art books every week and went through them with him.

Our local AS also has couples meetings, which we both attended, and they also took small groups of people with AD on outings in cars. That was great, because they all made friends. It's definitely worth giving them a ring to find out what's on offer.
 

Chrissyan

Registered User
Aug 9, 2007
570
0
62
N E England
pamron, I filled in the form to DVLA giving them Dad's diagnosis, he signed it but promptly forgot, as is the nature of the illness. It took them two months, but finally they wrote & told him they were revoking his license & he had to post it in.

We had to go over & over it with him why he couldn't drive but because it was official from DVLA he posted them the license himself. I then pinned the letter up on his cork board in the kitchen. No further problems & let me sell his car. I know that everyone with this illness is different but it worked for me, might be worth a go.