A time to reflect

[Coletta]

Dear Padraig,

Just sending you a big hug and lots of love. Im sorry you are ill and in pain again today.
Please dont ever respond when you're not feeling well. Those that have folllowed your posts will know you're not up to it and don't expect it.

Coletta xx

 

[Padraig]

What to do

There are some nights that I find it hard to get off to sleep. I'm saddened by all the posts I read on the site. So many of the problems I encounter in posts I've overcame on our Alzheimer's journey. It's so frustrating not being able to help, especially when I read of loved ones in the so called 'End Stage' when they no longer eat or drink.
Had I accepted the experts advise when my wife reached that stage there is no doubt that she would have suffered a very painful death.

I'm only too aware that each case is different and circumstances do not lend themselves to give the best possible one to one care. None the less Nursing Homes and Hospitals could do a lot more if only they would try to learn from ex-carers who have been there and as one Psychologist told me by email : "You proved them all wrong."
She was interested in my methods, but was unhappy with the N H S and left to teach in a University.
I'm attaching two photos of Jean. one of her in the NH the other after she was a while at home. I'd expect to be asked: how did the changes some about? The pictures speak for themselves. The child is our daughter's grandchild placed in Jean's arms in the NH and later in our Daughters arms.

 

[Coletta]

There are some nights that I find it hard to get off to sleep. I'm saddened by all the posts I read on the site. So many of the problems I encounter in posts I've overcame on our Alzheimer's journey. It's so frustrating not being able to help, especially when I read of loved ones in the so called 'End Stage' when they no longer eat or drink.
Had I accepted the experts advise when my wife reached that stage there is no doubt that she would have suffered a very painful death.

I'm only too aware that each case is different and circumstances do not lend themselves to give the best possible one to one care. None the less Nursing Homes and Hospitals could do a lot more if only they would try to learn from ex-carers who have been there and as one Psychologist told me by email : "You proved them all wrong."
She was interested in my methods, but was unhappy with the N H S and left to teach in a University.
I'm attaching two photos of Jean. one of her in the NH the other after she was a while at home. I'd expect to be asked: how did the changes some about? The pictures speak for themselves. The child is our daughter's grandchild placed in Jean's arms in the NH and later in our Daughters arms.

Dear Padraig,

I nearly missed your post last night, and when I was looking to respond today had difficulty finding it.

It was so nice to see the lovely pictures of Jean, especially the one at home with your daughter, with a contented and serene smile.

Im sorry you are having difficulty sleeping, I also regularly find myself thinking about what's going on on TP in the early hours, wanting to respond, but often lacking the energy to, and it takes it out of you even more when you're ill.

In your first post on this thread you wrote that you felt you didn't have much to contribute, but I'm sure that there will be people on here with their loved ones at 'end stage' who will be intrigued to know of your methods at how you managed the transformation in Jean's condition.

You previously mentioned intending to write a book about this - what a challenge - but in the meantime, how about some 'Padraig's tips', saved in Word, I think you can copy and paste with minimum effort time and again when you feel like responding? (Just a thought, - we may need expert advice soon).

Love and best wishes
Coletta xx

 

[Padraig]

Tipts

Hi Coletta,

With reference to tips, it's a case of where to start. There is one tip in the photo. You will notice that Jean has white objects in each hand. They are made of crape bandage and sponges.
With the loss of use in the hands and wrists, the hands turn in at the wrists in a fist. It then becomes difficult and painful to open them in order to cut the nails. Daily I gently massaged in warm water daily and used a pair of the sponges to take any pressure she exerted. I made a set of six pairs as they were washable. I attach another photo to show how her hands improved: note it's the same little girl only a little older.

It's important to keep the nostrils and ears clean, for that I kept cotton buds. Baby wipes and talcum powder were in daily use. Bed socks are a must in the winter. A thin cushion between the knees at night helps avoid pressure sores. Hot water bottles and a thermos flask to avoid the waste of any boiling water remaining in the kettle I found useful.
Administering food and drink is a subject on its own. Then there is the physio work to help remove the swelling in the ankles. One bends and stretches the flexion and extension joints in the arms and legs and rotates the ball and socket joints in the hips and shoulder etc.
The most important aspect of caring is for the mind. Once the carer achieves the right mind-set for both their loved one and themselves the daily caring becomes not unlike caring for ones own child. It would take a lot of writing to illustrate how I managed to achieve a mind-set to enjoy so many very special moments along the the way.

 

[Coletta]

Padraig, I got timed out and have just lost my (longish) response!! I tend to have the laptop on for a large part of the day and go back and forth seeing to MIL and doing things in between looking or typing. I remember it happened to you recently. So annoying!

Anyway, what a lovely photo, the little girl is delightful and I see what you mean about Jean's hands in the second picture. Your loving touch worked wonders. I have seen your picture on the back cover of your book, but it's the big smile in this foto which made me suddenly realise you look like my brother-in-law in Holland, (except he has less hair) so you have a 'double'.

I agree with you that the most important aspect of caring is for the mind, for both. When MIL becomes agitated and starts her calling or keeps looking for me and I get irritated inside, the minute I make myself dwell on how wonderful a MIL she always was, I calm down and become more patient which then helps with her care. (I don't have a problem with agression though, so it's easier for me).
You are a 'best practice' example to many of us here on TP and we could learn a lot from you. Thank you for your tips, very good the ones to make nail cutting easier and to prevent pressure sores. You are an inspiration!
Hope you are keeping well and still manage a run on the better days whilst we still have some.

Love and God bless
Coletta xx

 

[Padraig]

Mind set tip

Coletta,
I'm very much a realist and got use to being introduced by my Americans working colleagues as 'the guy who tells it as it is.' It's a fault I know, but there are times I can't help it when some people can't, or wont accept reality.

In the final years of my wife's end journey, I simply accepted where we were headed. I took on the mind-set of being in a small craft, just the two of us as we sailed along a winding Alzheimer's river. The craft I named 'NOW', in which we both remained, never knowing what lay ahead. There were many unexpected twists and turns in the currents, but there were also peaceful stretches: moments to be savoured, never straying from the 'NOW'.
The journey I was aware fast coming to its close and I had to keep constant alert for unexpected storms along the way and steer accordingly to make the journey as safe and comfortable as possibly. The further we traveled I became more conscious of how precious time became, so I lavished all the loving care possible before I would inevitable be left alone in the 'NOW'.
I've never forgotten the NOW as it progresses and still try to remain in it. It helps to appreciate each moment of time we're allotted. I'm hoping this makes sense.

 

[Coletta]

Coletta,
I'm very much a realist and got use to being introduced by my Americans working colleagues as 'the guy who tells it as it is.' It's a fault I know, but there are times I can't help it when some people can't, or wont accept reality.

In the final years of my wife's end journey, I simply accepted where we were headed. I took on the mind-set of being in a small craft, just the two of us as we sailed along a winding Alzheimer's river. The craft I named 'NOW', in which we both remained, never knowing what lay ahead. There were many unexpected twists and turns in the currents, but there were also peaceful stretches: moments to be savoured, never straying from the 'NOW'.
The journey I was aware fast coming to its close and I had to keep constant alert for unexpected storms along the way and steer accordingly to make the journey as safe and comfortable as possibly. The further we traveled I became more conscious of how precious time became, so I lavished all the loving care possible before I would inevitable be left alone in the 'NOW'.
I've never forgotten the NOW as it progresses and still try to remain in it. It helps to appreciate each moment of time we're allotted. I'm hoping this makes sense.

Is it a fault? I don't think so, I like it when people tell it as it is (though the WAY it is said might be a fault.)

Yes it does make sense, Padraig and you describe it so well. Your NOW is/was the ' husband/wife love boat', you were a great captain in the way you looked after Jean and gave it your all. Our boat has MIL in it and we try to do the best we can as we accept and have to adapt to her decline, but our journey is a bit choppy at times. I know I should appreciate the gift of every day more than I do at times, as at nearly 97 the time we have left with mum is precious, but right now I would like to get off the boat as she is non stop calling whilst she is in bed.
I can cope with it during day, but I hope she doesnt start continuous night time calling. Ive been to her a few times but wonder if that was a mistake as there is nothing wrong, its just she can't sleep.
I'm getting off (for now)

Coletta xx

 

[Padraig]

Coletta,
It seems like I've moved on a bit as I've had almost a week of improvement and am running better. The best part is that my head is clearer and I've at last started writing the story of our Alzheimer's journey.
I'm sure that there have been many personal stories written, so why should I write mine? There are two reasons, one is to free me of the frustrations of what I read and what I've observed along my lone caring journey. The second reason and most important is to share a different perspective of how I saw and reacted to the illness.

When I removed my wife from a NH, I was angry and upset at the whole system. Mostly, I objected to the manner in which the 'experts' or 'professionals' were coming between my wife and I. At the time we had been married 47 years and yet I was told off for cutting her toenails, and was asked to leave the room whilst 'carers' changed her pad. As I knew her far better than anyone else and had been caring for her at home for 7 years, plus I'd changed her pads for about three years, I refused to leave her room.
The situation was detrimental to both our healths. Only one option remained: move to a smaller house and take her home to care for her on my own before it was too late. Thank God I chose to go with my heart, as for almost eight months it was touch and go, but in the end she pulled through. Fortunately I've retained her medical file that contain all the entries on my wife's progress and remarks about my refusal to accept help, plus the fact that she was dying. To cover themselves they entered details of my refusal to continue some treatments. In the end they saw she was making a good recovery, they vanished from the scene and left me to get on with it for another four years.
Just maybe by sharing my story it will be of some benefit to others. This is likely to be my last post for some time.

 

[Coletta]

Padraig, Im pleased to read you have been feeling better this week and, with a clearer mind, have started your writing. (Isn't it a relief when the fog clears!)
What a challenge you have set yourself and I wish you well with it, the writing and getting the book published. I found your previous book fascinating and am sure that your Alzheimers story will be of great interest to many of us here, and that we will learn from it as well.
It will of course be very time consuming, but let us know how you are getting on, and also when your great granddaughter arrives in December.

Love and God bless
Coletta xx

 

[Jancis]

Dear Padraig,
I look forward to reading your next book. It's wonderful to hear how you navigated your way home. Do take care and don't worry too much about running - writing will need your energy too although it's a different kind of energy.
Love Jancis xxx

 

[Padraig]

Four years on

Coletta and Jancis,
I'm so sorry for being absent for so long. There have been some very bad days and of course I've been getting on with writing of our Alzheimer's journey. It's no easy task as I revisit some sad times, but the main point is, to try and help others who are less fortunate than I. I'm only too aware that there many books already written on the subject. Why then should I bother? Well when I decided to care alone for my wife I searched the internet in the hope of finding another person attempting the same in the hope of sharing information. I had no luck and was told it was not possible without some help. Our family and many others know that we managed to live as husband and wife right up to the time she passed on. Caring for her was the best part. The house work, shopping, washing ironing, cooking etc were time consuming. When your in one an-others company 24/7 in the final five years, one can't help but learn a little about Alzheimer's.
Four years on this very day I can still hear the strains of two songs: 'Love me Tender' sung by Elvis and ' When you fall in Love' by Nat King Cole as I left the church following her coffin carried by our four grandsons. The songs must have been specially chosen by our daughter and son for Jean and I. She made me whole and remains forever part me.

 

[Coletta]

Dear Padraig,

When I saw your post I thought....ah, the baby has arrived! But she is keeping you waiting and I hope all is going well with your granddaughter?
I had been wondering how you were. I am sorry you have been having some very bad days and to see that it is the anniversary of a very sad day for you.
From all Ive read in your book and on this thread, you and Jean had the perfect marriage right till the end. The way you cared for Jean was my inspiration to carry on looking after my MIL at home when we were having a bad time. Sadly, it is not expected that she will make Christmas, you may have seen my thread, but Im very happy she came back home from hospital and we are seeing it through till the end.
I wish you well with the writing of your Alzheimer's journey, it must take a lot of emotional energy and expect will be inspiring reading when you get it published. Take care, Padraig.

Love and God bless
Coletta xx

 

[Padraig]

Baby

Hi Coletta,
Sorry I forgot to mention the baby wouldn't you know it, this youngest grand daughter is referred to as the lucky one. From the day she knew she was pregnant she insisted it was a girl and so it is. It is due on the 25th, but her Mum (our daughter) has told her to have it at least a week earlier so as it does not unset her Christmas plans.
I've kept a present I purchased in the Middle East almost 40 years ago! It is a glass box containing six compartments: Frankincense, Myrrh (Medicine), Myrrh (incense), Mixed incense, plus two compartments each containing beautifully carved wooden boxes containing perfumes. I'll have to give her a cheque for gold.
I'm sorry to learn of your MIL. Hold each moment you have together, not waiting for the end. Only One Person decides when time is up, He gives and takes time. I wish you well.
I'll keep you in my prayers.

 

[Coletta]

Hi Coletta,
Sorry I forgot to mention the baby wouldn't you know it, this youngest grand daughter is referred to as the lucky one. From the day she knew she was pregnant she insisted it was a girl and so it is. It is due on the 25th, but her Mum (our daughter) has told her to have it at least a week earlier so as it does not unset her Christmas plans.
I've kept a present I purchased in the Middle East almost 40 years ago! It is a glass box containing six compartments: Frankincense, Myrrh (Medicine), Myrrh (incense), Mixed incense, plus two compartments each containing beautifully carved wooden boxes containing perfumes. I'll have to give her a cheque for gold.
I'm sorry to learn of your MIL. Hold each moment you have together, not waiting for the end. Only One Person decides when time is up, He gives and takes time. I wish you well.
I'll keep you in my prayers.

Padraig, what a beautiful and special present you have planned for your granddaughter. She will be absolutely thrilled with that! For you to have kept it for nearly 40 years makes it extra special.
A very dear friend of mine gave me a small bottle of anointing oil which he got through his church last Christmas. It contains frankincense & myrrh and it is the most wonderful smell ever, I wish I could spread some around with this post for all TPers to have a smell. Its unlike any perfume. I anoint mum with it every day now and it actually calms her as it smells of 'holiness', I cannot describe it, as soon as I smell it my thoughts go heavenwards.
The little leaflet that came with it gives a quick reference of the spiritual significance which you probably know, but just in case you dont:

Frankincense: intercession, sacrifice Exodus 30:34-35
Myrrh: purification, dying to self and preparation for the King Esther 2:12

 

[Coletta]

Padraig, I 'sent' my previous post by mistake. Hadn't quite finished!!
Just wanted to also say, thank you for the advice and keeping us in your prayers.
We have been told twice that mum wouldn't last to such and such a time, and Ive thought 'she'll still be here for Christmas'. As you say, He will decide when her time comes.

Coletta xx

 

[Padraig]

Stranger in strange land

As I read posts on this site I notice that most carers are women who are carers. The other fact appears to be they mostly care for their Mother, some for their Father. When their parent passes away I can only imagine the pain they must go through. There-in lays my problem. I'll never know how our son and daughter feel at the loss of their Mum and that bothers and hurts me. I'd like to take away their hurt and protect them.

Have I lost out big time in not having parents or family till I met my wife and began our own family? Jean's words 'your strange' I still hear whispered in my ear, simply because I see the world differently. Our daughter use to say: "Dad you live in a 'make believe world'." My reply: "I believe and work to make my belief come true." She still tells me: "Life is not as you see it, and families are not as you would wish them to be."
Reading the posts on TP gives me an insight to the pain and hurt in the real life world of so many. It makes me want to banish some of the sorrows, but somehow I feel I intrude in a land I don't belong. It appears that I bring some threads to an abrupt end. Sorry if I hurt or offend anyone.