communication

[nickyd]

Dear Alfjess,
Sending you, your Mum and Dad lots of love and hugs.
Look after yourself, won't you,
Much Love,

 

[Mameeskye]

Dear Alfjess

(((((((((((((((hugs))))))))))))))))

We atleast have known that our time was coming for the last year or so due to Mum's increasing frailty. As her independent mobility disappeared we have known that it would only be a matter of time before we were faced with any hard decisions.

I would suggest that you talk to the CPN and the consultant again if you have any reservations. This is not the time to hold back, you have to be completely comfortable with decisions at this stage. You must do what your heart tells you is right.

Like you I wish I knew the length of the piece of string. The little girl would love it to be long..but my Mother isn't coming back, no matter how much I hope! The Mother in me with work responsibilites, and rational and love for my own mother though hopes that it ends peacefully and quickly.

Love

mameeskye

 

[Margarita]

a continuing care home

Is a continuing care home nursing care home ? as I am wounding as they saying they discontinue heart meds etc, would she not just drop ? could have a heart attract so would need a hospice or nursing care.

No wonder you had 2nd thoughts , on the way home . One Min they saying, of putting her on Exbixa next min they want to discontinue all medication does sound so drastic , one extreme to another .

I was put in that situation after my mother sister came out of a diabetic coma/ stroke , I was the only next of Kin they said she never come out of it , so stop all meds , I said No, but agreed with them no intervention if she had another stroke she was tied up to life support , slowly she came around started feeding they where amazed she was in ICU then transferred to a ward

But then One mouth later she had another stroke 9 days later with morphine for pain relief she died.

Just wondering what the likely hood of your mother having a stroke or heart attack after heart meds are taken away. Did they talk about that with
you ?

how long is a piece of string

very short string when heart meds are taken away , what pain relief are they going to give her I would be asking , if she stays where she is , while they do all that .

 

[alfjess]

Is a continuing care home nursing care home ?

Yes Magarita The continuing care home is a nursing home, owned and managed by BUPA, but contracts beds to NHS for patients who cannot be cared for anywhere else. I don't know who employs and pays the staff BUPA or NHS. But there are psychiatrict nurses on the staff.

I had a long think last night and reached a decision.
I will allow Mum to be moved. In hospital, she shares a ward with 3 other people, visitors are not allowed to sit in the day room and trying to get Mum to leave the room causes her distress. At least in a nursing home she will have her own room and we can visit in the lounge, if she is fit enough.

The consultant says it will be 2 -4 weeks before the move and I suppose I can always change my mind if cicumstances change.

Maggie you are probably correct in saying the string will be short without the heart meds. but maybe that is the kindest way. Mum has no quality of life. Her only aim and it is definately a very agitated compulsion is to get her clothes off. She has no interest in me when I visit, no interest in anything else either, other than removing her clothes and screaming with frustration and exhaustion when she can't manage it. She would have hated to be like this.

I have to-night ordered an activity doll, hoping the zips buttons and things on the doll may distract her a little from her own clothes.

Thanks everyone, your support is greatly appreciated

Love
Alfjess

 

[Skye]

Dear alfjess, I think you've made the right decision.

John is a lot more comfortable in his CH than he was in hospital. Having a room to himself was wonderful in the early days, when we could have quiet times together.

Now that he's more ill, they like him in the lounge where they can keep an eye on him, but that's OK too, because I get to chat to the carers. It's a much more relaxed atmosphere than the hospital was.

Of course, if you change your mind, that's OK too!

Hope you're feeling a bit better tonight.

Love,

 

[Doreen99]

Dear Alfjess

what an awful meeting you had, especially since you weren't expecting what was said.

I think you've made the right decision regarding moving your mum, you've obviously weighed up all the options before you reached the decision.

I would imagine the atmosphere in a home is better than it is in a hospital ward. Every time I go to the hospital to see my ma-in-law, there seems to be so many different people around, in so many different uniforms, and I never know who to speak to about what. It's so "busy" - I think a home would be calmer and more relaxed, which might be more comfortable for your mum and for you, too.

 

[Margarita]

Yes Magarita The continuing care home is a nursing home

Oh I see , yes my mother went into one near us for emergency respite few years back , I would not say it was like a hospital as it was only for people in real last stages of AZ .

I wanted my mother to go they for all her respites as its so near us , but was told that its purpose built for people in last stages of AZ , so my mother would need to be in those stages to go they again . they done it as a one Of social
services as it was a emergency respite and I could visit her every day .

but it did show me what good quality care they have in my area for end of life care for people with AZ

Have you gone to see the nursing home they would like your mother to go to ?

Does sound like they be more equip with specialist staff to give your mother the best end of life care .

 

[j.j]

Alfjess i read your post yesterday and was dumbfounded, i tried to think of something to say to you and could,nt think of a single thing. We all know this illness progressess and dread each new stage but to be told what you were must of been awful. I know when my mam was agitated like yours i sometimes thought death has to be better than this, but in reality its hard to face. I am thinking of you and hoping the future is kind to you and your parents. x
j.j

 

[alfjess]

Hi

Thanks J.J, Doreen, Hazel, Magarita, Sylvia, Jennifer and all others who have helped and supported me in the decision to move Mum.

I only hope it works, but then again, at this stage what harm can it really do?

When we are visiting now we are trying to help her to drink Supplements.

The hospital have said I can if I wish, make arrangements and go and try to feed her at mealtimes, but I cannot bring in any food, because of cross contamination. I understand, it makes sense.

I can't go at mealtimes very often. It takes me approx 1 hour to get there and another to get home and I still have to fit in visiting Dad.

We can only do, what we can do and I have learned not to get stressed by what it is impossible to do

Thanks again
Alfjess

 

[Margarita]

We can only do, what we can do and I have learned not to get stressed by what it is impossible to do

That so true ! Good coping skill , your going to need it .



I was thinking that yesterday about the move,

at this stage what harm can it really do?

None really , only put more stress on you , but like you say

We can only do, what we can do and I have learned not to get stressed by what it is impossible to do

 

[Grannie G]

We can only do, what we can do and I have learned not to get stressed by what it is impossible to do

It was good to read that Alfjess, because the way things were going, in time you wouldn`t have been fit enough to visit either of your parents.

Take care

Love xx

 

[Skye]

We can only do, what we can do and I have learned not to get stressed by what it is impossible to do

Alfjess, you're absolutely right!

I'm lucky, I can get in to feed John because I'm only a ten minute drive away, and I don't work. I know that would be totally impossible for most people.

We all do what we can do, and no-one could ask for more.

You're doing brilliantly.

Love,

 

[alfjess]

Hi

I have bought another inappropriate undresser suit for Mum to change. Although the suits do the job, they shrink in the dryer, but are still better than the pink zoot suit.

I was talking to a friend in the week and saying that maybe an activity doll, you know with zips and button and things, might help distract Mum from removing her own clothes.

My friend arrived to-day and she had made Mum a felt handbag. It had buttons, which could be done, undone, a zip, velcro, a clothes peg attached with some ribbon a tassel. Very colourful

I was so very grateful and touched at her thoughtfulness and concern. I must admit I cried.

I don't know if it will distract Mum or not, but it was such a great thing to do.

Dad's birthday was to-day, so we all went to see him at the care home, complete with birthday cake, cards and pressies. I think he enjoyed it.

You know it is strange, but if I didn't know any better I would think that his "turn" last week has been beneficial.

He knew what age he was (85) and his date of birth. The carers have had no problems getting him out of bed or bathed and shaved this week???

Worked that one out!!

It was a good day anyway

Love
Alfjess

 

[Skye]

Glad you had such a lovely day today with your dad, alfjess. It;s good news that he's picked up again after your scare. You just never know, do you?

It was lovely of your friend to make your mum that handbag, I hope she takes to it, and will sit and fiddle with it.

Love,

 

[Grannie G]

Dear Alfjess,

What a thoughtful friend you have. It made me realize how many good friends really would like to help but find it so hard to know how. Your friend must have jumped on her creative skills, delighted to be able to do something constructive for you.
I do hope your mother likes the bag.

Good news too about your father. For whatever reason, he was able to enjoy his birthday.

Just a bit of happiness for you, too.

Love xx

 

[alfjess]

Hi

Well, the handbag was a non starter. Tried it, but unfortunately it didn't work.

Mum is only interested in getting her clothes of. Cuddles, brushing her hair, stroking her hands, nothing works.

I am thinking of trying aromatherepy oils next time. Lavender and chamomile mix, massaged into her hands, ie. when I can get her hands out of her top for long enough.

Thanks all
Alfjess

 

[Grannie G]

What a shame, Alfjess, it sounded so good, but then what do we know about dementia.

 

[alfjess]

Hi

I was told to-night that Mum is being moved to a continuing care home tomorrow and I think, I was only told because my daughter was visiting.

I am a bit shocked, because the consultant told me it would be
2 - 4 weeks before Mum was moved

I had also asked to be present at the assessment, when the unit manager from the new home came to assess Mum.

Apparently this assessment was done yesterday. I didn't know anything about it.

I wonder if she would have been moved without me being informed.

I am angry that my Mum and I have been treated in this way. I feel like once in NHS's clutches, they can do what they like.

I know for a fact, that I will fight tooth and nail, before my Dad is admitted to that hospital.

Sorry for the rant
Alfjess

 

[Grannie G]

I am angry that my Mum and I have been treated in this way.

I bet you are Alfjess. It`s the height of bad manners and disrespect.

It wasn`t a rant and there`s no need to apologize.

I hope the move goes well and it doesn`t disturb your mother too much.

Love xx

 

[Margarita]

Wondering how the move went ? xx