My Alzheimer's - as time goes by.

[Sandpiper]

My Alzheimer's - as time goes by.

I am now well into my first year, since being diagnosed with Alzheimer's. Although the medical professionals are of the opinion that I have had AD for several years now. I am unaware of any major changes in my condition since official diagnosis. At least that is my perception,which may not be that of my dear wife and carer. I am certainly aware that there have been some minor changes to my cognitive abilities and to my personal confidence when socialising with others. I am also conscious of being more anxious and irritable in certain stressful situations.Travelling by car as a passenger in particular,I regularly sit with my eyes closed until we reach our destination.Needless to say we do not travel very far,etheir to go for shopping, or to visit medical and welfare professionals.
My sleep paterns and sleep quality have also changed and continue to deteriorate. I cannot remember (unintentional pun!) when I last had a long, uninterrupted and refreshing sleep.I tend to have several mini sleeps with vivid dreams or nightmares,all of which leaves me feeling tired both physically and mentally during the day.
I am also banned from answering the home telephone,I am now required to let it ring to answer machine in the event of my wife being un available to take any call. I previously got chastised for being naughty,rude and aggressive ,particularly to cold callers,or individuals trying to sell me stuff.I have a wonderful talking parrot and allowed her to join in the conversations!! I honestly wish that my sense of humour is with me to the end,I would miss it dearly,it shines a light that others fail to reach.It is my sword and shield.

Following my initial negative experience with the drug Aricept, taken at different strengths, over a period of several months, my daily routine has now settled down to one of ongoing dependance on my dear wife for my care and welfare. Without her I would be in serious trouble. I am also physically disabled with Arthritis and require assistance with walking. She continues daily, at an incredible rate of knots! to ensure that I am washed,clothed ,fed and have all of my daily medication, which I may require. I constantly worry about her and the eventual toll that this increasing drudgery, generated by me, will inevitably have on her own health. I firmly believe that to come to terms with someone who has been diagnosed with Alzheimer's, carers and family must first of all, let go of the previous person they knew and embrace the new person, just as they are. Since that person will continue to change as time goes by. Remembering that he or she is living in the present and to let go of the person they used to love.That person is never coming back.

 

[Saffie]

What a moving and insightful post Sandpiper. Thank you so much for expressing your life and feelings so clearly. Your final sentences I found very moving. The advice they hold is not easy to take but probably very wise. I wish you all the very best that life can offer you and yes, I hope you keep your sense of humour too. We all need to, I think.

 

[Margaret938]

As Time goes By

I was very interested in your thread today, I have been caring for my darling husband for 3 years since his diagnosis of AD. I finally gave into the advice of Dementia Service, Social Worker and our two sons, and put George into a care home on 6th April. To being with I felt that I had let him down so badly and my life felt so worthless. But reading your last paragraph about letting go of the person I used to love is so very true. I have found a new George, I don't love him any less, but I can cope with life a lot better now, I visit him every day and we can still show our love for each other, with lots hugs. Unlike you, George is no longer articulate, but can still say 'I Love You' and it means so much to me. I have spent many hours feeling sorry for myself and crying, hankering after the wonderful life we had, but when I came to terms with the fact that our old life is gone and will never return, I look on every moment we share and every day as it comes as a bonus. Don't get me wrong I would love to have him back home here with me, taking care of him 24 hours a day, but I have to admit that it was wearing me down and in that state I was often short with George and he did not deserve that. So I have had to make a compromise .

 

[lilysmybabypup]

Sandpiper, a very moving post, but I just want you to know that a sense of humour is still alive and well in my dad. He's 86, has had diagnosed AD for 7 years, has lost so much but he still speaks really well and is extremely loving and gentle. He doesn't remember my name but he knows I'm a beloved one. He calls me Mama and tells me all the time how much he loves me, and Mum too. We sit quietly together holding hands and listening to his music.

Dad comes out with so many clever and amusing lines, completely intended, so I'm sure you will retain yours too. As cruel and destructive as this disease can be, it's given me a chance to strengthen and deepen the love Dad and I share. Yes, it has been difficult and challenging. Some days are best forgotten but I have so many others to hold on to firmly, and, while my clever, handy, and jack-of-all-trades dad may have gone, the one who loved me unconditionally is still with me, and I won't let go just yet.

Take your life one day at a time and keep sharing with us here because you have so much to teach us all.

Take care,
Stephanie, xxx

 

[marionq]

My Alzheimer's - as time goes by.

I firmly believe that to come to terms with someone who has been diagnosed with Alzheimer's, carers and family must first of all, let go of the previous person they knew and embrace the new person, just as they are. Since that person will continue to change as time goes by. Remembering that he or she is living in the present and to let go of the person they used to love.That person is never coming back.

This is the most sensible advice I have read so far - the fact it comes from an Alzheimer sufferer makes it even more relevant. I am at the stage of seeking advice wherever I can and value this. Last week I was told by a health worker not to look to the future but just deal with each day as it comes. All of this makes sense but it is hard to let go of aspirations and goals - I guess we just have to adapt to small steps rather than big jumps forward. Also delighted to see that Margaret in Blairgowrie is coping better. Will keep you both in mind.

 

[carpe diem]

Thank you for your post, it's a very interesting read.
I don't have AD but I do tend to be rude to cold callers and shut my eyes in the passenger seat, I just can't help myself!
I think everyone should get a parrot to speak to cold callers, what a great solution, you should patent the idea!
Your wife sounds wonderful and I wish you both well and hope you continue to focus on the positives.

 

[Sunbell]

How refreshing to read your thread, especially from a sufferer's own experiences.

As carers it is difficult to understand what goes through our loved ones mind when they are suffering with Alzheimers.

Your wife is a very caring lady and this must be a great comfort to you. May you both have a long and happy life together and thank you for sharing your thoughts with us.

Sunbell

 

[beech mount]

Sandpiper you are doing ok, who else could have thought having the help of a Parrot
to answer cold calls, well done, you should patent it!
Well done you and your wife.
John.

 

[Sandpiper]

I would like to thank all of the forum members who took the time to respond to my thread.I appreciate your comments and good wishes for my wife and myself.

In particular I wish to respond to the following two replies: -

Sandpiper, a very moving post, but I just want you to know that a sense of humour is still alive and well in my dad. He's 86, has had diagnosed AD for 7 years, has lost so much but he still speaks really well and is extremely loving and gentle. He doesn't remember my name but he knows I'm a beloved one. He calls me Mama and tells me all the time how much he loves me, and Mum too. We sit quietly together holding hands and listening to his music.

Dad comes out with so many clever and amusing lines, completely intended, so I'm sure you will retain yours too. As cruel and destructive as this disease can be, it's given me a chance to strengthen and deepen the love Dad and I share. Yes, it has been difficult and challenging. Some days are best forgotten but I have so many others to hold on to firmly, and, while my clever, handy, and jack-of-all-trades dad may have gone, the one who loved me unconditionally is still with me, and I won't let go just yet.

Take your life one day at a time and keep sharing with us here because you have so much to teach us all.

Take care,
Stephanie, xxx

Stephanie,your reply relating your Dad's current condition and experiences was inspirational.It made me smile that after all of his illness related changes, that he still retains that spark of humour which remains evidence of the much loved person he was and still is.God bless you both.

I was very interested in your thread today, I have been caring for my darling husband for 3 years since his diagnosis of AD. I finally gave into the advice of Dementia Service, Social Worker and our two sons, and put George into a care home on 6th April. To being with I felt that I had let him down so badly and my life felt so worthless. But reading your last paragraph about letting go of the person I used to love is so very true. I have found a new George, I don't love him any less, but I can cope with life a lot better now, I visit him every day and we can still show our love for each other, with lots hugs. Unlike you, George is no longer articulate, but can still say 'I Love You' and it means so much to me. I have spent many hours feeling sorry for myself and crying, hankering after the wonderful life we had, but when I came to terms with the fact that our old life is gone and will never return, I look on every moment we share and every day as it comes as a bonus. Don't get me wrong I would love to have him back home here with me, taking care of him 24 hours a day, but I have to admit that it was wearing me down and in that state I was often short with George and he did not deserve that. So I have had to make a compromise .

Margaret,what can I say.You certainly have been through an emotional grinder.From what you say of your experiences with George,it is still impacting on you and having a considerable influence on your quality of life. I sincerely hope that since he moved to the care home,that you manage to shed your feelings of loss and find an inner peace.
God bless you both.

 

[Sandpiper]

I'm not the person you see,
I left that body long ago.
I left it way back there.
Will you please believe,
Given all that you see,
I left that body long ago
But somehow nobody knows.

So goodbye,
You were my world and my life.
And I don't know why
You've lost your mother, lost your wife.
But there's more,
Something more than meets the eye.
This is not the end,
This is only goodbye.

Will you please believe
I'm not the person you see,
I left that body long ago.
I left it way back there.
Now I'm free, I'm as happy as can be.
I just wanted you to know
That I left that body long ago.
So long ago.


Amy Macdonald song lyrics for "Left that body long ago".

 

[Sandpiper]

My tireless Wonder-woman!

 

[Sandpiper]

'A grand day out'.

The weather here is simply gorgeous.It certainly lifts the spirits,usually I am confined to my outdoor Pipe smoking bench,however today I was allowed to take my mobility scooter for a ride and enjoy the ambience and sensory treasure trove of living in a rural area.Long live sunshine and the happiness of 'a grand day out',such days are to be savoured!

 

[Sandpiper]

Today is a good day to be alive.The sun is shinning,not a cloud in the sky.
The birds are all busy feeding their offspring,zooming everywhere catching food.
I am sitting outside smoking my pipe on my favourite bench seat and enjoying the whole scene over the valley.
My wife's cottage garden is starting to explode with floral colour,it never fails to amaze me how quickly plants grow at this time of the year.Natures bounty is everywhere.

Even our old Fig bush which has never produced any fruit, is set to give a fine crop,first ever.WOOPS the photo has come our rather large ,apologies to the forum admins.I do not have any photo editing or enhancement.My photography tends toward the naive and primitive
The Sun has got his hat on and so have I!

 

[lilysmybabypup]

Glad you're loving the day, and looks like someone will need to make some fig jam shortly.

Enjoy,
Stephanie, xxx

 

[Izzy]

Oh yum! Figs with a bit of parma ham, some bread and a bottle of Montepulciano! (Sounds a bit like Omar K!!)

 

[Sandpiper]

Glad you're loving the day, and looks like someone will need to make some fig jam shortly.

Enjoy,
Stephanie, xxx

I will pass your suggestion to She Who Must be Obeyed!
Thanks Stephanie.

 

[Sandpiper]

Oh yum! Figs with a bit of parma ham, some bread and a bottle of Montepulciano! (Sounds a bit like Omar K!!)

Ah! Izzy you knew I shared the same Bacchanalian weakness as old Omar.

 

[Sandpiper]

Many of you will have come across this very poignant poem which gives me a lump in my throat every-time I read it,so for those that are not familiar with it, here is the beautiful "Long Goodbye".

Deep within that hollow stare,
of my presence they're unaware.

A life that is fading away,
in spite of things I try to convey.

Memories locked up in my mind,
and there they are kept all confined.

Good times spent long ago,
and all the love they did bestow.

For these moments will live forever,
and my pride in them will endeavour.

Strangers seeing me sitting there will know why,
Alzheimer's is called the long good-bye.


I am feeling rather smug and quite proud today. I managed to reduce the size of my recently taken garden flower photos to allow them to fit in this post.Maybe my brain is evolving.

 

[carpe diem]

Lovely flowers.
I only knew how to resize pics when I read a thread on here. (I did it in "paint" edit; resize/skew). TP is Just a mine of info.

 

[lilysmybabypup]

Stunning pics, I love the English gardens. Australia is a little more tricky for gardens and I have a very brown thumb, but I certainly admire these gorgeous ones. So glad it gives you pleasure too.

Stephanie, xxx