A long and Lonely Road

[wightdancer]

Hello,

My wife and I have been together for 54 years. I retired from working 7 years ago in 2011 and my wife 8 years ago. We planned to have lots of holidays and activities together. All was well for the first year but then I noticed that she was forgetting simple things like where she had parked her car or where we were meeting. Tests followed and 5 years ago she was diagnosed with Alzheimer’s.

Whilst there has been a slow but steady decline in her mental (and lately physical abilities) we continued to enjoy foreign holidays up to and including 2018. Supervising holidays and even trips out at home have however become more and more challenging for me and I think 2019 will see an end to our travels.

Our doctor and specialists say the deterioration in my wife’s abilities is inevitable but fortunately they supply pills that cope with her variable mood swings, delusions and sleepless nights etc.,

My feeling is that I am standing on a railway platform with my dear wife leaning out of a carriage window smiling, waving and saying goodbye as the train pulls out of the station at the speed of 1 foot a day. Right now, she is at the end of the platform, still in sight but almost unable to hear me anymore. Thankfully she is oblivious that the train won’t be coming back but for me it is mental torture.

 

[karaokePete]

Hello @wightdancer, you are welcome here and I hope you find the forum a friendly, informative and supportive place.

I understand what you mean about the foreign holidays as I am just about at that stage of quitting them with my wife. Like yourself, it's a premature end to retirement plans. However, it is what it is.

You have come to the right place for support and the collective knowledge and experience of the forum membership is vast so feel free to ask any questions or join in threads.

In case you haven't found them yet here are links to a couple of useful pages. One takes you to the very useful Publications page and the other takes you to a page where you can do a post code search for local support services

https://www.alzheimers.org.uk/get-support/publications-factsheets-full-list

https://www.alzheimers.org.uk/find-support-near-you

 

[marionq]

Travel was a big thing for us too from our earliest days together. It is now impossible as John is frail physically and lost mentally. We do have, or at least I have, a host of memories of all the places we wanted to visit and did visit. His social life with his day centre is now busier than mine but I can say I have no regrets because our life was a good one and we made the most of it when he was well.

So enjoy what you can but it is right to be aware that there will come a point when it just doesn’t work anymore.

 

[Izzy]

Hello and welcome from me too.

I also travelled with my husband until eventually it became clear that it was no longer sensible.

I just wanted to say that I think your train analogy is so poignant.

I hope you find the forum useful. It's a great place to share your feelings and there's always somoeone around to listen.

 

[Grannie G]

I`m another who travelled as much as possible until it because too much of a trauma for my husband and increased his confusion.

I didn`t lose my husband slowly. It was more in fits and starts. Somedays we were the best of friends and on other days he either didn`t know me or saw me as enemy number one.

It is indeed a long and lonely road, however good the support.

 

[Andrew_McP]

My feeling is that I am standing on a railway platform with my dear wife leaning out of a carriage window smiling, waving and saying goodbye as the train pulls out of the station at the speed of 1 foot a day. Right now, she is at the end of the platform, still in sight but almost unable to hear me anymore. Thankfully she is oblivious that the train won’t be coming back but for me it is mental torture.

I don't like quoting large chunks, but that's so beautiful it needs repeating. I know exactly how you feel, only in my case my mother's often ripping the carriage apart and throwing things down the platform at me!

I shouldn't joke about it, and the carriage needed refurbishing anyway, but what a wonderful analogy. Partings at a railway station can be wonderful, if you know you're getting that person back one day. But...

Well, no need for any buts. Thanks for painting a very poignant scene for us; I'm sure it strikes a chord with many of us.

 

[Philbo]

Hi @wightdancer

Our journey sounds similar and it is indeed a tortuous, long road.

I have included a link to a recent post I commented in, which outlines my own situation.

https://forum.alzheimers.org.uk/threads/my-lovely-mum.113133/#post-1592971

Happy to chat anytime.

Regards
Phil

 

[wightdancer]

Hi Phil
Thanks for the link. My wife is also 69 yrs old. The similar shuffling around is something she does while 'collecting' items on her travels around the house. We had a problem 3 months ago when she got very angry at silly things but prescribed medication has got her back to being happy
most of the time.
I naturally worry about the future and realise that as tough as it seems right now it is going to get much worse. In January we are going to start daycare for a couple of days a week and see how that pans out.
Regards

 

[PalSal]

I don't like quoting large chunks, but that's so beautiful it needs repeating. I know exactly how you feel, only in my case my mother's often ripping the carriage apart and throwing things down the platform at me!

I shouldn't joke about it, and the carriage needed refurbishing anyway, but what a wonderful analogy. Partings at a railway station can be wonderful, if you know you're getting that person back one day. But...

Well, no need for any buts. Thanks for painting a very poignant scene for us; I'm sure it strikes a chord with many of us.

Yes, that was an accurate image.
Not sure where my OH is on that railline….I donot think he is in the station anymore.
I will be bringing him over to England in January. I find traveling with him too stressful, but I want to see his mum and he needs to see his family of origin…..I think.

 

[B72]

It is a really good analogy. We’ve been together over 50 years. It’s lonely on the platform, and as you say, it’s not going to get better.

I comfort myself with the thought that we’ve been lucky to have had all those happy years. I’m so glad I found TP, which makes it a little less lonely. I hope you find that too.

 

[maryjoan]

It is a really good analogy. We’ve been together over 50 years. It’s lonely on the platform, and as you say, it’s not going to get better.

I comfort myself with the thought that we’ve been lucky to have had all those happy years. I’m so glad I found TP, which makes it a little less lonely. I hope you find that too.

I only had 3 good years with my partner before he began showing signs of dementia - we have now been together 8 years - how I wish and yearn for years of happy memories to sustain me.....

 

[B72]

I only had 3 good years with my partner before he began showing signs of dementia - we have now been together 8 years - how I wish and yearn for years of happy memories to sustain me.....

Yes maryjoan, I keep reminding myself how lucky we were. I’m so aware of the many who don’t have this.

 

[Grahamstown]

@wightdancer has struck a chord and I can certainly identify with his remarks. We have been married 53 years and together for 2 years before we got married. He started to show obvious signs a year ago and I started using TP in January because I was already struggling because he was drinking too much which muddied the waters about his state. So my story has been a short sharp shock, from an able man although 79 to a shuffling weak thin man with very little memory now at 80, and is very hard to bear. My experience is much much shorter and less terrible than some people who have endured awful things, but the loss of your partner is a loss whatever the time scale circumstances. I have taken him on 3 cruises this year which he loved and still wants to go again. I am in two minds at the moment because it all depends on whether I have the strength to do it, living two lives as one does.

 

[wightdancer]

@wightdancer has struck a chord and I can certainly identify with his remarks. We have been married 53 years and together for 2 years before we got married. He started to show obvious signs a year ago and I started using TP in January because I was already struggling because he was drinking too much which muddied the waters about his state. So my story has been a short sharp shock, from an able man although 79 to a shuffling weak thin man with very little memory now at 80, and is very hard to bear. My experience is much much shorter and less terrible than some people who have endured awful things, but the loss of your partner is a loss whatever the time scale circumstances. I have taken him on 3 cruises this year which he loved and still wants to go again. I am in two minds at the moment because it all depends on whether I have the strength to do it, living two lives as one does.

I imagine that it can be harder for a wife to cope physically with a husband with dementia than the other way around. Getting in and out of the car and even washing and toilet duties can be hard work.
We also went on a cruise (our first) this year which was good but needed careful and continuous organisation which was tiring. The swimming pool was not an option and the disabled toilets were male or female so I could not assist my wife, so we could not use them…..crazy!

I am surprised at the usual lack of understanding from friends and family of what emotional challenges partner carers face day to day.

After a lifetime of sharing thoughts, ideas, plans, comments, jokes and…….. love together, suddenly you are basically on your own. Forget the logistics of all the day to day problems , the anguish of losing your connection to your life partner is for me the biggest challenge.

 

[wightdancer]

I imagine that it can be harder for a wife to cope physically with a husband with dementia than the other way around. Getting in and out of the car and even washing and toilet duties can be hard work.
We also went on a cruise (our first) this year which was good but needed careful and continuous organisation which was tiring. The swimming pool was not an option and the disabled toilets were male or female so I could not assist my wife, so we could not use them…..crazy!

I am surprised at the usual lack of understanding from friends and family of what emotional challenges partner carers face day to day.

After a lifetime of sharing thoughts, ideas, plans, comments, jokes and…….. love together, suddenly you are basically on your own. Forget the logistics of all the day to day problems , the anguish of losing your connection to your life partner is for me the biggest challenge.

 

[AliceA]

So much of this echoes. We have a long marriage behind, travel has always been important to my husband. For many years in these Isles then once children had flown we explored Europe and stayed with friends too, so sampled the local life to the full.
These were blessed times. These memories still feed us.
Physically life is closing in. Now our travel is via TV.
As I woman I find the demands to great, my own strength is fading fast. Our last short holiday was really tiring so for me counterproductive.
I feel we were fortunate to travel when we did,

 

[B72]

I imagine that it can be harder for a wife to cope physically with a husband with dementia than the other way around. Getting in and out of the car and even washing and toilet duties can be hard work.
We also went on a cruise (our first) this year which was good but needed careful and continuous organisation which was tiring. The swimming pool was not an option and the disabled toilets were male or female so I could not assist my wife, so we could not use them…..crazy!

I am surprised at the usual lack of understanding from friends and family of what emotional challenges partner carers face day to day.

After a lifetime of sharing thoughts, ideas, plans, comments, jokes and…….. love together, suddenly you are basically on your own. Forget the logistics of all the day to day problems , the anguish of losing your connection to your life partner is for me the biggest challenge.

Your last two paragraphs could be be writing. So true, so very true.

 

[Grahamstown]

@wightdancer “We also went on a cruise (our first) this year which was good but needed careful and continuous organisation which was tiring. The swimming pool was not an option and the disabled toilets were male or female so I could not assist my wife, so we could not use them…..crazy!”
These words of yours are so true, which is why I wonder if I can do it again. I was able to take my husband into the disabled toilet so that may be something to find out if you try again. Otherwise he loved cruising, felt safe on the ship but anxious on shore excursions.

 

[lovey11]

I only had 3 good years with my partner before he began showing signs of dementia - we have now been together 8 years - how I wish and yearn for years of happy memories to sustain me.....

 

[lovey11]

I to only had 3 wonderful years before my husband started to show signs that things weren't right. He was diagnosed in July last year. We have been together for almost 7yrs married for 6 in March. I know how you feel my heart is broken