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Carers Anonymous Meeting

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ProfilePosted byOptionsPost Date

Jean (Monmouth)

Jean (Monmouth) Report 17 May 2009 19:23

Spent a lot of the time trying to find indoor jobs for my OH to do! He cant use his lathe until he has been given the go-ahead by the eye surgeon.


~♥footie~angel♥~ Report 17 May 2009 20:18

I have just read this thread and have been insprired by it! In amongst all the choas that is GR is an haven. I consider myself very lucky Ive been blessed with wonderful children my eldest a boy has classic autism and my youngest a girl has complex needs, ADHD, Autisic tendencies and elective mutism I share the role with my husband although he takes the role of carer and my middle child with out whom we would have lost the battle long ago and what a battle it has been but we are blest in that they are both learning to live independent lives and making much progress my son is in the process of GCSE's and has defied the odds special rules have had to be put in place on his behalf to enable him to be the same as all the others and he has begun planning his future. My daughter has just been accepted into high school a thing we never believed would happen and its mainstream at that so we are truly thankful x


SpanishEyes Report 19 May 2009 01:41

Hello everyone,
there I was feeling rather sorry for myself, a long way from home in a hotel and am in dreadful pain with sciatica.
Then I read these threads and decided that my pain is nothing compared to what all you wonderful carers are achieving.
I am a nurse who has specialised in Dementia Care and although past normal retirement age still work as an adviser to a major health care company,,,now you know why I am in a hotel room!

There is help out there but sometimes you have to know the ropes as they say.
Respite care is available across the UK , and funding is available. If you do not have a social worker ask for one asap, Ask about respite care, visit nursing homes who specialise in the condition your loved one has, spend some time there, talk to the staff and watch what is happening.

The funding comes from different places, the is the RNCC (registered nurse care contribution) for those who need RNs to care for them, there are monies from the Social Services, try the Alzheimers Society.
If anyone wants individual advice and can tell me how to contact them without displaying details to the world I will do whatever I can.
I am passionate about this.

And my sciatica..well it is very painful and has been for some days but hopefully it will improve. If anyone has any tips please let me know


SpanishEyes Report 19 May 2009 02:18

Thank you Diane,
I will by some of the cream yuo have suggested as Husband arrives from hme to morrow and it would be nice not to be hobbling around. Unfortunately I cannot take the medication normally given due to an allergy. Isn't that just typical for a nurse.
My name is Bridget and I had stopped putting my name out due to an unfortunate incident late last year.
I also have been a carer for family, my father in law had Alzheimers, my mother in law had macular degeneration and they lived with us. My mother was very unwell for the last two yers of her life and as i live abroad i was not possible for me to do as much as I would have liked, and my father had severe depression and eventually had to stay in a nursing home.
Well I think I will try to get some sleep now so good night and thank you once again. I will look at this site again tomorrow


Sandie Report 19 May 2009 02:47

Don't often post these days mainly due to time restrictions. I look after my mum who has Normal Pressure Hydrocephalus.
Thank you for the thread

Purple **^*Sparkly*^** Diamond

Purple **^*Sparkly*^** Diamond Report 19 May 2009 04:16

It might sound awful but I was so glad my parents died before they got any form of dementia, they were both 79 when they died 5 years apart in the 1990s but I don't think I could have coped, my son was young as I am an older Mum and my brothers and their wives would have found some excuse to stay away at all the difficult times as they did when Mum and Dad were ill with their various ailments, cancer, heart disease etc. I admire so much people who manage to care for their loved ones. I did help a neighbour with her sister who moved in with her when her dementia became too much for her to live safely alone. The neighbour had already cared for her husband when he had Alzheimers, then had her sister there after he died, and sadly towards the end of her life when I wasn't living so close anymore, she developed dementia herself, well her daughter decided that was what was wrong. Considering the daughter lived away, single, no children, but visited an average of half a dozen times a year despite being only an hour's drive away, I don't think she was thinking of her mother, more the convenience of having her mother somewhere so she could sell the house and get things cleared up quickly. Within a few short weeks of being pushed into a home, the old lady died.

My thoughts and best wishes to all you carers whatever the illness, I hope I don't end up having to be cared for, as there is only my son, and he needs to be able to live his own life without me to worry about. O.h. wouldn't be very good, if I am having a bad day with the cfs/fm he sometimes forgets I am laying upstairs and if I didn't come down for a drink or something to eat, I would starve or get dehydrated. Carer material he is not!



Bob78 Report 19 May 2009 05:59

I have read all your comments and thought I would share an article about a forthcoming Alzheimers Awareness week. I does not matter whether it will be published for it was good for my soul to do the recollection.
"The Girl in the Blue Beret
There is one crystal clear memory of that 9.15PM Friday night, Birkenhead Ferry ride in 1951. It matters not whether my eldest brother and I had been studying at ‘varsity, but to be honest, it was more likely we had been attending the popular “coffee evenings” arranged by the Auckland University, Men’s House Committee. What was most significant, of that every-day trip and its impact on the eventual life of my future family and me, was that he had pointed out an attractive girl in a blue beret. Our Creator must have wanted such images seared into a special part of the brain for future reference. A few years later, when visiting “The Crystal Palace”, at the time, a popular Saturday night dance venue, I saw this same face “across a crowded room” as the song goes and so led to my meeting and going out with my future wife. The saying, “The rest is history”, did not apply in our case for being in my early twenties, I was not ready for settling down. During the wedding of another brother in 1954, a married friend asked this question, “Do you have a steady girl friend Bob?” My reply was that I had met a very nice girl but was not ready for settling down. It is unique that such a question was to be my motivation to begin the task of a suitor wooing a person not receptive to this belated and unexpected second approach. Ardour is not easily quenched and a dozen red roses each week for six weeks achieved the goal of a date, which happened to be the film “Desert Song”. “My desert is waiting. Dear, Come there with me”. So sang actor and singer Gordon McCrae.

Our life together has been far from the desert of the film. It is sad that one of our partnership of fifty-two years can neither remember, 9th February 1957, the day of our wedding nor 9th February 2007, our wonderful Golden Wedding celebration. Such is the reality of the effects of Alzheimers on a partnership. One has the myriad of the memories of a lifetime of the type shared today with you, the reader. The other knows little of what went on minutes earlier and may forget whom family, friends or I are. This new smaller confusing world has been developing and enveloping Pam for the last six years as it has done for the 40,000 others with the condition throughout New Zealand.
This is sad, as is also the significant effect on those loved-ones who stand by and see this gradual loss occurring. To the question that may be in an enquiring mind “What does one do?” The answer is simple “All that one is able and all that one feels unable but with practice becomes able”. So into it is hidden the complexity of finding new strengths and skills. These may be beyond many and outside caregivers will provide the help. Each family member will come to terms with the changes in his or her own way. For all it is an emotional experience. An aspect that has been a great help was to use my creativity, to capture on a DVD, many of the photos of our lives before and subsequent to our marriage. By adding special music, it has resulted in an important historical family record, which will share with later descendants, the emotions of our time. Others have made up special photo albums during this time. A little later, there comes a time, when it is a wonderful and healing experience to be able to share with others, whether by letter, phone or especially by email. The sensitive role that Alzheimers Association Auckland plays, with their field advisors and support groups, is an essential way of learning and understanding the challenges that face the care-giving family. Importantly all understand!
For all, death is the certainty of which we are all aware. We cannot, nor would we want to control its arrival. Differing from the shock of sudden death, we can learn that on the positive side, Alzheimers, sometimes termed “the long goodbye”, can be regarded as a luxury in this final process. It affords a rare privilege for family to emulate the same love, by giving care to the one who had been its skilled advocate all her life. Of course the mentor did not realise, want, nor expect that such a challenging test would arise, to see the extent to which her pupils had absorbed her passed-on skill. Love shared has inestimable value but no price. The glimpses of the person of yesteryear showing that the loving care is appreciated are the reward."

I was talking to a care-giver yeaterday about feeling guilty for running on empty. Later in the day I got a warm email to which I replied thanking the friend for filling the tank and so I am passing this on to all whether your own tanks are empty or need a top-up. Using the chocolate simile, we all love the soft centres but there are a hardy few who are capable at handling the others.


SpanishEyes Report 19 May 2009 07:03

Purple Sparkle your message is enspiring.
I watched my mother-in-law look after her husband from the early onset of dementia to almost the end of his life. they both lived with us as a family and the love and suport was amazing but so was the frustration, anger( not always sure who ewe were angry about or why) the fun times, the tired times, the funny times worrying times etc. It became the "norm" for me to receive messages saying
"***has gone missing,or found wandering along the beach looking for his army mates" most of our local community knew him and would brig him hme. It was almost a releif when he couldn't work out how to open thelocks on the doors. However we really do not know just how much people with Dementia do recall and so we learn never to assume. T could recall his time during world war 2 and spend hours standing in the garden shouting out to his mates, never mind he weather.
I have never regretted choosing to specialise in Dementia Care although it was not always thought of as a very important area to be interested in.
It is important for a real diagnosis to be given as different types of dementia develop in different ways and need different coping skills.
Another aspect that many people are not aware of is how many young people are being diagnosed with a dementia.

I urge anyone who cares for a person with dementia to contact their local Alzheimers Society, (google Alzheimers Society) and there is a mass of infromation available with real life experiences.
Just one other thing, my sisx children all say that helping to look after their grandfather wasa priveledge, so do not worry about youngsters being involved.
On a lighter note, when my T was dying and we were with him his last words were to my husband his only child and we still laugh when we talk about it. There we were in a bedroom in a veery caring nursing home in Cambridge UK when T suddenly sat up and looking straight at his son said, "Guiness Pete" and then smiled. We were ALL taken aback he had not spoken clearly for so long nor recognised anyone and yet his last words were so accurate, as this was his sons' nickname .

I hope all this makes sense as I have been awake for most of the night with this awful sciatica. I just had a thought. If I hadn't had the sciatica I would not have been awake and then I would not have found this message bord and found so many wonderful caring people, You are all an inspiration so when I go to work toadya I shall think of you all and be assured tha what I do does help some people


LindaMcD Report 19 May 2009 10:37

My husband went in yesterday for one weeks respite care which has to be paid for.

I am going to the theatre tonight with my daughter and having a meal out first. A rare treat.

Linda x


Huia Report 19 May 2009 21:23

Fiona, if your dad is living by himself I think it is time he moved out or got somebody living with him. You cant rely on the elderly lady over the road to keep an eye on him. My OH cant tell the time too well now. I tell him when I go to bed that I dont want a cuppa before daylight. I even leave a note on the bench saying that, but he often brings one in at 2, 3, or 4 in the morning. Last night I slept in the spare bedroom and barricaded the door so he couldnt open it if he got up in the small hours looking for me. First uninterrupted night I have had for a long time, although my legs felt cold so I will have to put another blanket on tonight.

Linda, if I want respite, I have to find somebody to come and stay in our home while I go away for however long. Trouble is to find somebody he knows and is comfy with, and who will take him walking each day. My OH just lives for walking.

I wonder what would happen if I got sick and had to go to hospital? Would the powers that be expect me to find somebody to stay with him before I go? If it was a sudden thing with no time to find anybody would they just shrug their shoulders and leave him to fend for himself? Actually, if it happened my son would have to step in as he has the E.P.A. But he lives 3 hours (less if he speeds!) away.



Huia Report 20 May 2009 10:21

Diane, I am in New Zealand. We used to have the respite care in rest homes about 20 years ago, it was up to 28 days a year, but the rules have changed. I now have to get somebody to come here while I go away. His sister has said she will come if I need a break. As for my OH going into a rest home, he would object vehemently. I know it will come to it sooner or later but at present I feel he is not 'bad' enough for that. He still knows who I am (most of the time!) and can still make a cuppa and doesnt go wandering off. He does like going for walks but usually tells me when he wants to go for one. Our son does not like him to go on his own. I am not keen either, but OH gets fed up sitting around when I am busy so I warn him to just go up the road and back, not on any of our bush tracks (we live in the country), not to get lost, not to get run over. I just hope he does take care when he is on his own. Yes, we are what you call pensioners (we call it superannuitants). He is 79 years old. I am 73. I am not planning to get sick or anything but I just wondered what would happen if I did.

OH had a letter today from the hospital giving him an appointment for a CT scan on the 29th. The one he had 3 yrs ago which gave us the diagnosis was done privately, we had to pay for it, so I hope this one is free. I didnt know he would be having one, but I suppose the hospital wants to make sure of the diagnosis or see how his brain has been regressing. I will ring them in the morning to confirm the appointment and ask about it.

On Sunday we might be going to plant native trees in a reserve near Auckland and on Monday I want to go to Auckland on a protest march! We have been told by Govt that we are to become part of Auckland City. A lot of people are angry about that. Our rates will probably be increased and the service decrease.

Hope to do more tree planting in Regional Parks on other days over the next few weeks while the woman who normally takes him hiking on Sundays is laid up after an op on her foot.

I will have another night in the spare bedroom tonight to catch up a little bit more on my sleep.

Huia. (off to bed very soon)


Huia Report 20 May 2009 10:32

Looking back at p4, Bob77, I think I have read that article somewhere before. As for the Golden Wedding bit, it made me a bit teary eyed as we reached that milestone last March but OH didnt have a clue what day it was and for various reasons the few people I would have invited to come for the day were unable to come, apart from our son, so we didnt 'celebrate'. We didnt get any cards either, just a phone call from my sister.


Cynthia Report 20 May 2009 22:34

Nudging this up for the night shift. Keep smiling you wonderful carers.


Bob78 Report 21 May 2009 08:05

Hi Huia
Re Golden Wedding, know the feeling for about two weeks before I thought I may have to ring about sixty invited guests and explain that we would not be able to make it. But no, all was great on the night and of course the photos taken formed a good part of the family historical DVD. Even had a second one but much more exclusive when all the bridal party, except one deceased, (including (bridesmaid) sister-in-law from the States and her two daughters) had a great time down at Waihi Beach at bestman (brother) and bridesmaid (his wife) bach.

Re article, don't tell me that someone else has had the same experience! It is unlikely that you may have seen some of it in one of my Christmas cards if I ever recounted it there. Perhaps I dreamt it all or alternatively, it is not real and is a modern day fairy story about a prince and his princess? Starting to doubt my own memory now. (not really)

Hi Fiona
I have found the three days of day care (9-3) has been fantastic for both of us. Better than sitting around with her boring old husband. I like to think of it as a weaning-off process for us both for when the inevitable day arrives when care in a dementia unit become essential.

*** Mummo ***

*** Mummo *** Report 21 May 2009 08:53

Hi all,haven't replied for a while as mum is still in hospital (4 weeks on saturday) and still haven't heard when we can expect her home, but she is doing well so in the best place still. Hope you all have a good weekend.


Huia Report 21 May 2009 10:00

Hi, Bob. Maybe I am the one that is imagining things. Not surprising since I am not getting enough sleep these days.

Does your Hospital Board have the 28 day respite leave in which your OH can go into a resthome or do you have to find somebody to come to your place while you go away? I am with the Counties Manukau Health Board and that is what I was told. Perhaps they are just trying to put me off using the rest homes. I see in todays paper that dementia patients from Northland are being put in Auckland resthomes while their carers have the 28 day respite care. I think I will move to Northland. Anyway I am N.A.F.A. Anybody in NZ will have heard of J.A.F.A., I have changed the first word to NOT.

After spending an hour after dinner sleeping (sitting up) on the settee my OH has gone to bed, so I must follow him if I want more than an hours sleep tonight. I just hope I can get to sleep. I am not used to these early nights, even when I am dead on my feet. A couple of nights ago I even tried half a sleeping pill but it still was a while before I got to sleep. Perhaps I will take a whole one tonight. Dont much like all this pill-popping but when I get desperate........



Sharron Report 21 May 2009 10:35

One hand and wheels is off out to the village lunch today.That will get him out of my way for a while,and he won't want much tea tonight.

He usually goes to the next village on the service bus on a Wednesday,which means I have to think up some shopping I need each time,just to give him a purpose.

Unfortunately,yesterday,his friend who goes with him missed his bus to get here so they didn't go.

It is not an option to go on a different day as I have to arrange with the home-care team to get him commoded early on a Wednesday so as to fit in with the bus times.

I am quite pleased with the social life we have built up for him over the couple of years he has been in a wheelchair.It won't be long before he gets sent out blackberrying now,whether he wants to or not.Then he will have to make them into jam!No pece for the wicked eh?


Bob78 Report 21 May 2009 10:48

Hi Huia
Yes I am a JAFA. What my brother likes to call "Just Another FRIENDLY Aucklander" it sounds so much nicer. I will leave to the imagination of others to determine what other towns and cities think of us and after all one third of NZ population lives here. In my era Jaffas were favourites at the "Flicks".

Not ready for that type of respite as long as I get my two rounds of golf each week. Took me a while for the day care as well but I have been so pleased with the results after taking the recommendations of the care team.

On the sleep side I find I need to go late about 10-30 - 11-00 and if I snooze on the couch during the day what does it matter. We generally rise and shine about 6-15. Can't get out of our retired farming habits of seventeen years. We bred coloured sheep for craft work. Didn't mind the rainy days as a lot of spinning could be done. Left the knitting or weaving for Pam. Fascinating times. The spinning wheel is still in the lounge.
Excuse the ignorance but what does OH stand for?


Bob78 Report 21 May 2009 11:18

Thanks Fiona
I don't do crossword puzzles so am a bit slow on the uptake. At least I won't toss and turn tonight wondering what it meant . Does that mean I have to go back and edit out Pam and put in OH. I suppose that's what Anonymous means.
The trouble is with my typing it might end up OL or BH and then everyone and not just myself would be confused.


Sharron Report 21 May 2009 16:07

Had the letter from the council this morning to say that my council tax band has been lowered.It is worth about £150 odd a year.

He is dozing quietly downstairs having had seconds of both chicken and rice and the pudding which was some sort of coffee concoction.

All the literature,such as it was,that came to us about stroke rehabilitation was mentioning the need to eat even if the victim did not fancy it. He didn't fancy much the pureed stuff he was meant to eat so he had what we did but hd to chew it well.The problem then was not getting him to eat,it was getting him to stop.

We had a couple of scares with lung infections which may have been because of his fragile swallow but that was soon after he came home.Once he got the hang there was no stopping him!