Tell me why

[Lonestray]

Hi Everyone, I have not posted for some time. Why? well reading so many of others I'm reminded of all the same problems I've been through over the first 7 years of my wife's Alz. Then came the Fall like so many others, once she walked into hospital it was all down hill. Then the NH, by the time one complains the damage is done. The best move I made in the 12 years was removing her just in time to take full control 24/7.

Why do people make a blank statment 'no one can care 24/7 alone.' On the 1st April God willing it'll be 4 years I'll have been caring for her. The first year was the hardest as she was a bag of bones and had pressure sores all over, even on her heel, where now there's a scar. By the end of 2003 she had recovered enough for me to dress her and start using a hoist (prior to then she was light enough to lift) to put her in a w/chair and take her out. In spite of being told, at least three times she was dying, she is healthy now, though stiff and unable to speak.

Now to the question, why would the Mental Health Dep ring me on Fri 16th asking if it would be OK to visit us? Other than a Nursing Asst who was meant to visit once a month, we saw her in Sep and again not till Jan this year, no one has been interested. An appointment was made for the Fri 23rd @ 14.30, the person asked if it was OK for a Nurse to come with her, I asked "A real Nurse?" I was happy to agree. When I asked why the visit I was told she understood I was doing a brilliant job caring for my wife!

Friday morn the 23rd I got Jean ready for our twice weekly shopping trips to town. Using the hoist I moved her from the bed to the w/chair. As I was undoing the hooks she had a fit the fourth one. First in April then Sept, Nov and now Feb. I moved her back to the bed and for the first time administered Diazepam. I had been advised to wait fine minuets and if she failed to recover to phone for an ambulance, which I did after 10 min. Whenever some thing like this happens I phone our daughter, she is good support. This time I had to go it alone at the hospital as our daughter was spending the weekend with her son and family, before he ships out to Afghanistan this week.

We arrived at the hospital 40min after the start of the fit ie 09.30hrs and returned home at 15.30hrs. I had last eaten my breakfast at 05.00hrs and Jean's at 06.00hrs. This post is too long, there's so much more to this. I'll come back later, suffice to say Jean is well and I'm over the moon with her. God bless. Padraig.

 

[dmc]

hi padraig,

just wanted to say well done on the wonderfull care you give, my mum is in a dementia ward at a local hospital she comes home two days a week, becouse dad cant cope with anymore than that, he would dearly love to have her home but just dosent think he would manage, we are currently awaiting a care package for him for the two days but like everything it takes months to get going, your thread has given me a little bit of hope that people do and can manage at home you have my upmost respect.

well done
donna x

 

[Grannie G]

Dear Padraig,

People do make blank statements like `no-one can care 24/7, without help` but they don`t know about you. You are one of the few exceptions and are to be admired.
I am caring 24/7 without help, but my husband is still mobile, has all his language and is still able to feed, wash, shave, toilet and dress himself. So although he isn`t left alone for longer than an hour, we have a long way to go.
I just want you to know, your posts are never too long. They are full of positve spirit and courage. I`m so pleased for you, that your wonderful care was acknowledged, at long last, by the Mental Health Dept.

Keep well, Love Sylvia x

 

[BeckyJan]

Padraig: I have just read your post and I am filled with admiration for you. The word must be getting around how brilliant you are cos obviously even the nurse had recognised this. Please keep posting as you are a great inspiration to all of us. I have a long way to go; you are such a fine example and I hope I can be even half as good as you. Best wishes - hope you are both ok now. Beckyjan

 

[Lonestray]

To continue

Thank you all for your support. At the hospital I made sure I stayed with her, for after the first time I was not allowed into the treatment area and later received her clothing in a plastic bag. They had been cut off her to carry out the treatment. These last three times I insisted on being present all the time. This time they did a blood test, an X-ray and a ECG. It's left to me to get a sample of urine from Jean, no look so far. I try each time I put her on the commode, they gave me a Gallipot 60ml it fits inside my fist, how am I supposed to get her to wee into it? don't say! The Doctor was very good sounded like an East Euopean. Asked so many questions, and when he could not find a place on her hand or arm to extract blood I donned gloves to help hold her body at the top of her thigh. I had to take her cloths off as her limbs are stiff. He expressed surprise when he discovered I cared for her alone: "God will reward you in the next life for this". To which I replied: "I've already been rewarded by still having her". During the six hours stay I was provided with pads on request so as to change them three times. In addition I asked they phone the Mental Health Dep to say I would not be home in time for our meeting. I agreed to a rearranged time of 4.00pm.

Arrived home at twenty to and proceed to make a meal for Jean and was feeding her when our guest arrived, minus the real nurse (she was off ill).
It appears the purpose of her visit was to give me: A Guide to a Carer's Needs Assessment plus an 11 page of Assessment of Carer's Needs. Created on 26 Oct 05. Well I had a look through it to-day and it gave me a chuckle, questions like, how many hours care per week do you usually provide? If only Jean could talk about the people she could see some years ago, I'd get them working for me! They know I'm on my own and have been for years. It reminds me of Little Bo Peep lost her sheep and didn't know wher to find then, well she wouldn't she lost them! Leave them alone, what else can she do, she lost them!

The strangest thing, after I fed her, washed and changed her, she kept trying to speak, her lips were trying to form words and garbled noises came out, how wonderful it felt. The feeling when I first fell head and heels in love with her, you know the feeling, you want to spend every waking hour to geather. Is it any wonder I don't want to share her care with another.

Our guest asked if it would be OK to send a CPN to visit us, as she would be intrigued to watch me feed Jean, as she was quiet taken by my methods.

We had good news last week as well Jean got a raise in her pension of £1.06 per week. I also keep an eye on the Age Addition para each year, it's for if your 80 or over, no change in the past 4 years it's still the princely sum of £0.25 a week! something to look forward to? Also one of our Grandsons brought us our Christmas present, he's 25, better late then never, don't you just love them.

Wish me luck we're off shopping tomorrow. God willing you all have a nice day and God bless. Padraig

 

[Grannie G]

Hi Padraig, At the rate you`re going, before very long, the services will offer you a consultancy in care.
As for the princely 25p per week, for pensioners over 80, I seem to remember an ex neighbour getting the same amount, not 4 years ago but 40 years ago.
Hope the shopping goes well. Love Sylvia x

 

[Nutty Nan]

Padraig, I want to send you a huge HUG!
Your love for your wife shines through every line you write, and the world is a better place because you're in it .................. keep loving, keep caring, and keep in touch: you always manage to make me smile!

 

[Tender Face]

Padraig, your posts are NEVER too long ... and forgive me for not wishing you luck - only because you don't need it - you are one of life's greats who has learnt to make that for themselves!!!!

Bless you for sharing the 'can do' attitude!!!!! I can only aspire to your strengths!!!!!

Much love, Karen, x

 

[Lonestray]

What are SS there for

Hi you all, Yesterday I tried to find out where the Social Services fitted into the scheme of things. The last time I did that was after a year when I took Jean from the NH. I'd seen a phone number in the medical diary, when I called they seemed surprised no one knew about us. Some one came and told me we were entitled to Council Tax reduction which was welcome but some how, to use an American expression 'we fell through the cracks'. I did discover the Nursing Asst wont be comming again as she has been transfered. They promised to get back to me to let me know how the system works! of course I explained I was just interested, and I was doing fine, I'm still waiting.

I was thinking I must be slowing up because six-seven years ago I was doing all the cooking, cleaning and Jean was doubly incontinent in addition I had taken in the Grandson (the one who brought the Christmas presant last week). I did his cooking, washing, ironing and cleaning. He needed help, but he was a handful. I gave him a wing of the house to himself, 3 bedrooms, two bathrooms, kitchen and lounge. Had his meal ready for him when he came home from work and put his centeral heating on. He took his meals from our kitchen into his bedroom, I let the plates and cups pile up, hoping he'd bring them back. It never happened, in fact he kept his garbage there as well. Long after it occured to me he never even made Jean nor I a cup of tea. With all the land and rooms to maintain it became too much I blew my top with him. Afterwards I felt so ashamed I went to him to say I was sorry, it wasn't his fault but his parents (my son) had failed him. He was then 18-19yr old. He sent me a letter 2-3 yrs later thanking me for all I'd did for him. This caring lark make you into a very patience person. Of all 9 Grand children he's the one I most want to find his dream. Jean is doing fine thanks.
Good luck to you all and God bless. Padraig

 

[alfjess]

Hi Padraig

It is people like you who should be awarded an M.B.E
I do admire you and wish I could be a quarter as good as you.

I have just had my youngest Daughter move back in with us (tiff with her boyfriend) and am thinking, that when she lived here permanently, she was such a slob, bedroom wall to wall clothes and I am thinking to myself, I hope they make up quickly
If they don't make up at all I am consoling myself with the thought that maybe having lived on her own, she will have become better at keeping her room clean

In saying all that, she is a lovely natured girl (well, I would say that) I love her dearly and had no hesitation in saying yes, when she phoned asking if she could come home

Alfjess

 

[Lonestray]

A world of my own

Hi everybody, anything I have become is due to my wife Jean and of course my perspective on the world, fashioned by my early years in the custody of Nuns and Christain Brothers. When first I was released to the outside world I found it strange, fearful but also wonderful. Having been brought up in the company of only males to age sixteen and trained to respond to the command of a whistle, you might understand why I would tend to keep to myself and just watch and learn. The lack of nurturing, love or education left me emotionaly barren but have also proved a real blessing because I could see the riches all around me, which allowed me to live my dreams.

When I look on TP I am deeply moved by so much love and kindness.
Whenever I'm asked what kind of person Jean was/is I reply "A woman's woman," I learned that from a woman because I questioned why do so many women like being with her? "Though she is good looking she's not a threat". There are a number small incidents during our years to geather best show who she is. In the 60's we lived next door to a middle aged couple who had a 15yr old daughter. I'd noticed the girl was not around, when I asked, Jean said she they sent her to live with her Grandpsrents. Jean started to spend more time in the couples house, I thought that's nice, untill one night she started to make for next door at 23.00hrs. When I complained that I had to be up for work in the morning, she replied: "Oh well I'll have to tell you sometime, I'm taking Mary to the hospital she's having a baby!" Afterwards she supported the girl in spite of us having three children of our own. Every time I came home the girl and baby were there, I called her 'Mrs Just' because she always said "I'm just going."

I'm still trying to get some wee from Jean, the hospital will have to wait, when I asked her to have a wee for me, I found she did but it was on the net I use to lift her with the hoist. Now it's in the wash. Must dash washing to put out. Best of luck to you all and God bless. Padraig

 

[Lonestray]

What is the system

Hi everyone, last week I phoned Carers Support to ask how SS related to our situation and where the Mental Health Dep fitted into the system, if there is one. Use to having to chase things up, but mostly giving up, I phoned again today. I was greeted with a "Oh so sorry" and then told normally a SW is assigned to each patient and carer but in your case you are on the back burner. It was only out of general interest I'm asking I told the lady. Now it appears I'm going to have visits from the Nursing Assit., from time to time, to what purpose? I'm told, just to see your both OK. I'm still trying to reason why an eleven page assessment document full of silly questions is left for me to fill out. When I mentioned this, I'm told it is known you are 'a one off' and if everyone was as strong as you, we'd be out of a job. If they know us, then there's no need for a form, I'm not filling it out, they must know there are no fairies washing,cooking, cleaning, and shopping in our house, and I'm sure no Mary Poppins. Why do I get the impression everyone appears to keep their distance from us. I'm told "look what you did with your wife, we've not expeienced it before."
Maybe that's why we haven't seen the doctor who attended Jean three and a half years ago as she drifted in and out of consciousness when he advised me, 'not to sit holding her hand overnight, as they ten to pass away when you go to the toilet, or for a drink'. I'd be more than happy to meet and thank the staff who supported us then. It must have been hard for them with me sticking my nose in all the time.

One thing I am worried about are the fits, what if one happens when we are out shopping? Or out on a walk, how do I administer Diaepam away from home?
Rang her GP and was told if it happens at the supermarket ring for an ambulance!
Otherwise lay her on her side and insert the Tube, some trick while sitting in a W/chair or car. Guess I'll have to work that one out, I'll have to.
For now we're both doing very well and thank you for your support. God bless
Padraig