Too old at 65

[Lonestray]

Hello out there, I'd like to know if others feel there's an unwritten law in the medical profession which states over 65's with Alzheimer's should be disregarded? I often felt like the child sent to buy an ice cream,only to find on returning home there's a sold sign and the family has moved! I can take a hint. Up to Sept '99 my wife and I were attending monthly appointments with a psychological specialist when he was moved to a new post he informed me future appointments would continue with a specialist at Hereford. Early Oct. I phoned their Mental Health Dep and was advised there would be no more appointments. Asked why I'm told she is 65 and we don't see over 65's. She was 65 on the 7th! Over three years ago after removing her from a nursing home I refused to be housebound. It meant me taking my wife every where with me, lifting her into the car from the wheel chair. I applied for a disabled badge. This I was refused because she was on the lower rate of mobility allowance (£15 a week) as she was over 65 she was ineligable for the higher rate catch 22. I expect it's because I lift her. I did get the badge after visiting their office and told them of my intensions to may them give me one. Once a year I see a medical person when I chase up her flu jab.
On the 6th April '06 I raised Jean from her nap before tea. Now I have learned to be very gentle and bring her mind to the present. That day she opened her eyes in fright, I believe she was witnessing a horror of the past, she stopped breathing. Rushed to A&E with tube up her nose (couldn't open throat) and needle in hand. Had her cloths cut off and was resuscitated. I was advised should she relapse she would not be reventilated. Two days later after explaining our situation it was agreed I could have her home. I'm then expected to take her home, but they did get the point, her cloths cut up in a plastic bag and her in an open hospital gown plus a stretcher case. Three weeks later 'she' receives a letter: "Your Doctor has asked me to arrange an X-ray examination for you. Would you please attend the X-ray Dep etc. Please report and bring this letter with you!" It's not the hospital's fault but some GP who hasn't seen her in years. The GP's surgery is a few minuets walk, where I asked who had arranged the X-ray and was told you'll find out at the hospital. I had words with the hospital and explained the situation and told them she was fine. They in turn said to forget about the X-ray. These are but a few of the strange things I have encountered and I can tell you others have nothing on Monty Python. One girl believed she could get the Nobel Prize for curing Alzheimer's. I could write a book which would make you cry and laugh but one book at a time. Hang in there and God bless. Padraig.

 

[Lucille]

Hello Lonestray

Your story is shocking and, as you say, Pythonesque at times. How can a health authority treat your wife the way they have? You should be receiving help/advice from social services or a CPN or both! I only speak from helping my mum who is now 75. We too hit the 'too many birthdays' wall and it was only down to my perisistence that mum obtained an appt with a geriatrician. It strikes me as odd that the onus of caring has been placed squarely on your shoulders. Your comment about the disabled parking badge beggars belief.

Can you visit your GP and explain the situation? He/she seems to have missed a trick here! I can't believe you have been left in the wilderness like this and only have access when you follow up for a flu jab. I don't know anything about nursing homes; you mention you removed Jean from hers. Perhaps others on here can comment on this and whether this has had an adverse effect on NHS support/care provision for you.

I'm sorry I can't offer anything constructive, but just to let you know there's others who care. Don't be lonely in all this. You are doing all you can. Please post again and let us know how you both are.

 

[jarnee]

Padraig,

This is a dreadful situation. You must feel like you are wading through treacle toffee !!!

Sadly, I think many of us could tell other tales of brick walls being built whenever we try to do the most basic things....the way this country treat the "elderly" is a national disgrace in my opinion.

Keep us posted, Padraig. Good luck to you both.....and keep wading !!

Jarnee
XXXXXXXXXXX

 

[jenniferpa]

Padraig, now your wife is over 65 have you looked at getting her Attendance Allowance?

Jennifer

 

[Tender Face]

Padraig, you write those books, I will be first in the queue for a personal signing!!!

I don't think it's just an unwritten 'law' in the medical profession ... I am humbled and ashamed to admit that until this affected a member of my own family I had never realised the sheer nonsense - not to mention discrimination - 'we' as a supposedly integrated society - show for the elderly - and not so elderly - affected by dementia..... or other mental health problems....

Couple of weeks back I was thrilled mum was 'discharged' from one consultant's clinic ... I thought that meant progress.... some weight gain - no sign of cancer returning in THAT particular area.... THEN I got the 'copy GP' letter which referred to... 'given all her other problems, we see no need to continue surveillance.....' I wondered had they just 'given up' on her????? OK, I'll concede, any surgical or other treatments might be more problematic now than pre-dementia days ... does that make her a second-class citizen???? Her life less meaningful and worthwhile???? Some may want to 'write her off' .... I won't ...

Strangely, in my corner of NW England, mum by virtue of being under 75 is still classed as 'early onset' ... and the help that is being offered to both me and her now would not be there had she passed her 75th birthday.....???? Why does 'one arm' of the NHS fight another??? Wouldn't it be better if everyone were on the same side?????

Sorry... doesn't take much to get me on my soapbox,

Well done, Padraig!

Love and best wishes to you and Jean, Karen (TF), x

 

[Lila13]

Arbitrary age limits

My mother's local hospital stopped accepting patients under 2 and over 70 (i.e. the two generally most vulnerable groups).

The paramedic only found out when he tried taking her there after her fall in February, and had to take her about an hour further with a bleeding head.

Apparently it's something to do with patient choice!

 

[Lonestray]

Age is just a number

Thank you all very much for your responses, you can't know how good it feels to know someone is concerned. Lucille, about nursing homes, I never wish to go near one again. It still hurt from what I saw there, it reached a stage where some on the 'inmates' thought I was a member of staff with spending up to 9 hours a day there. One poor lady was badly hurt through lack of care, I was so upset I put my arms around her and cried. That's something very odd for me to do, it's just occured to me as I write. I can't even put my arms around any of my children or grandchildren once they are no longer children. I made a video at the home just for the record to show the the improvements now in my wife.
Jarnee, I'ved long since given up wading through treacle. I couldn't be happier and I enjoy my early morning run, pushups, situps and weight training.
Sorry I was wrong the mobility allowance is now£16.50 a week, the Living allowance is £62.25. I have no gripe with that I would be happy to look after her for nothing. The power of love is what's motivates me.
Oh Karen, Your name make me want to say what I tell all my children to try never saying, "If only" Karen was the youngest of our children at 15 when she was knocked down and killed. By the time she was born I had learned more about being a father. We had so much in common she was left handed, like I started out in life until the nuns in the orphange "bate the divel out of me". Up to recent years I could never speak of my stolen childhood. Not until the Irish Goverment issued a public apologie to all the children placed in the custody of religious orders for all the abuses committed over 50 years ago. Now I write through the eyes of a child who started life as a 2yr old charged in court with begging and sentenced by a Judge Cussen to be detained until age 16 and put to work at ten. My devolement was so stunted on release I didn't know the differance between boys and girls. I was seventeen by the time I recevied my very first present, it was at Christmas, a pair of socks. It has been a strange and exciting world to pass through over the years. Jean my wife was the first person I allowed to get close to me, so close she grew to be part of me. Up to then I was emotionaly barren I had seen violent death in the intitution and just shrugged my shoulders. Two phrases I have gotten use to are 'You'er strange' from Jean, and 'Things are not like that Dad' from our daughter. I respond 'I'm not going to change' and 'They should be'. I see a disfunctional society and find a lot of fun in it. Coming up to 75 I know I have been a very lucky person I achieved most of my goals in a very exciting life. I retired to a large country house at 54, represented my country at sport, worked and traveled the world. Now I'm left in aw at what women do year in and year out, as I'm up at 05.10 and I'm on the go washing, ironing, cooking, cleaning and looking after my baby. It's never ending but remembering Jean done all this most of her life makes it worth while. What's age got to do with it, each of us are given a piece of time, how long? you can't buy it, but you can share it. Our daughter's time was 15yrs. May God give you the strenght to take the load. Padraig

 

[Lynne]

Padraig, as they say, "You couldn't make it up and expect to be believed"!
Thank goodness you, like most of us, survive by drawing on our sense of humour - even if it has, like mine, become somewhat cynical & warped .

Whilst not belittling your situation or experiences AT ALL, I feel I must 'speak as I find' to be even-handed, and say that not all medics or health professionals are as uncaring and inefficient as those you have encountered. Those with whom my Mum & I have interacted locally have been excellent (Mum's only at early-moderate stage so far, so there's still time for me to change my mind!) and have 'bent rules' where they can to help - so far!

God bless Padraig, and God help us all.

 

[Lonestray]

Who knows?

Hi there fellow carers. I can understand why I have experienced heart ache and pain from the time my wife had to be admitted to hospital almost 5 yrs ago. I believe it's a lack of understanding for the needs of both carer and victim. When I first decided to take full control for my wife's well being I was very apprehensive as to whether I was capable of going it alone. After the first night when I saw her face light up with a smile I knew my basic instinct was right. Although her health got worse in the first few months I made a point of being involved and having a say in her treatment. Her medical diary (which I retain) makes interesting reading, one entry 24/7/03 "Paddy caring for Jean and well understands she is dying". The best support during this worst period was from a lady Psychologist. She showed a great intrest in our wellfare. When she discovered I no longer required medical help for my wife, she asked to visit us in the summer of '04. So surprised at the vast improvement in Jean she remarked "You removed all medication and did things your own way." She invited me to write everything I did different to bring about the change. The resultant article was published in SIGNPOST a mental health journal by NHS Wales. I explained that most of my wife's illness were caused by the lack of care in oral hygine, bed sores due to weight loss, failing to turn her and so much more. Shortly after her visit she moved on to a new post with a Univeristy up north.
I can accept there is nothing more can be done for my wife, but how I wish there were other people like the Psychologist who were interested. My wife looks so healthy and content though I take each day as a bonus, I believe and hope she can keep going for more years. Finally the experts say it's not possible for one take on caring alone for someone in the final stages. What are the final stages? From what I read she passed them more than four years ago. Has anyone experienced my wife's present stage? God go with you. Padraig

 

[storm]

Hi Padraig,It is possible to care for someone with the last stages of A/D at home i know because i did it for my mum in law connie. Its tough and at times heartbreaking but she died 4wks ago at home and in comfort and i dont regret a moment ,but i am only 50 and very detiermend.The toughest part was when she would no longer eat i think once i accepted that there was nothing else i could do to change this things got easier.She was bedridden for the last 2wks and it was a lot less work and less strain on the back ,she was in pads and i got quite adapt at rolling her over to change her.She was put on morphine patches those last 2wks and she was more at ease than she had been in a long time. I THOUGHT I WOULD BE RELIVED WHEN SHE WAS FINALLY AT PEACE AND THE 24/7 CARING HAD ENDED BUT I FEEL AT A TOTAL LOSS HOW DO YOU PICK UP THE PIECES AFTER CARING SO INTENSLY FOR SO LONG EVERYTHING SEEMS A MUDDLE BUT ONE THING I DO KNOW IS I DID A GOOD JOB AND SHE SHE DIED KNOWING SHE WAS LOVED AND CARED FOR.GOOD LUCK WHATEVER YOU DO. STORM

 

[Margarita]

storm

I was looking at your profile & saw your first ever post . I was wondering how was your Mother ?

BUT I FEEL AT A TOTAL LOSS HOW DO YOU PICK UP THE PIECES AFTER CARING SO INTENSLY FOR SO LONG

How about treating yourself to a well desired holiday with your husband ? I must say I do admire your courage of caring for your mother in law until the end

 

[Kriss]

There is little justice in this world Padraig as it seems you have sadly found throughout your life. I always keep returning to the dreadful "why" question but as there seems to be no answer I guess we all just pick up the pieces and carry on with whatever faith or beliefs we may hold. The one strength that keeps me going is the love for those around me, however bad things are we have to keep going for their sakes. I do hope you continue to be strong as you have and that you and your wife can carry on climbing those mountains that the "system" build in your path. No answers I'm afraid but there are lots of shoulders around here to lean on. Hope it helps a little.

Kriss
x

 

[Norman]

Hi Padraig
what is the final stage,it must be different for every body.
I have cared for my wife now for in excess of 11 years.
Things are a little easier at the moment ,I did manage to get more help funded and that made a difference.
I was also fortunate to find a carer who is one of the kindest caring women that I have ever met during my lifetime.
I look after my wife with the help of carers and intend to keep her at home until I am unable to cope any longer.
We have been married what seems like a lifetime and I cannot imagine life without her.
Even though it is not as my Peg was I am grateful for the times when she returns to me for a short time and I get a cuddle and a smile.
It's all very sad,this life is not what we wanted or expected but we have to make the best of what we have Day to Day.
Norman