If you partner has dementia - how many of us want to walk away?

[sphall]

I think if anyone claims not to have wanted to walk away then they're either incredibly lucky or lying to themselves. My father has alzheimers - tells me about how deeply unhappy he is, his wife is also deeply unhappy (and then sad when my father is being sweet). It seems an impossible situation but for the moment we'll all soldier on. There's no shame in taling a walk alone - you have to find waya to survive.

 

[maryjoan]

I think if anyone claims not to have wanted to walk away then they're either incredibly lucky or lying to themselves. My father has alzheimers - tells me about how deeply unhappy he is, his wife is also deeply unhappy (and then sad when my father is being sweet). It seems an impossible situation but for the moment we'll all soldier on. There's no shame in taling a walk alone - you have to find waya to survive.

It is all about surviving a life style which we were not designed to live. Partners are meant to be that - partners in life - married or not. When the dreaded dementia strikes, the relationship ceases to be and takes on an entirely different form - and not a form that either party would want..

 

[NORTHSIDE]

I was telling someone recently about my situation, my wife is 59 and was diagnosed with Alzheimers 4 years ago. The person I was talking to said her mother had been diagnosed at 59 and had survived until she was 75. I felt awful but my heart really fell in the realisation of what was ahead and the thought that I am 63 now but the life I have now looking after my wife is all I can look forward to. The guilt really kicks in at times like that.

Sorry this is so negative, from reading the posts on here I am amazed at how many people still manage to keep a sense humour, some of the posts are quite inspiring, promise I will try harder.

 

[PalSal]

I was telling someone recently about my situation, my wife is 59 and was diagnosed with Alzheimers 4 years ago. The person I was talking to said her mother had been diagnosed at 59 and had survived until she was 75. I felt awful but my heart really fell in the realisation of what was ahead and the thought that I am 63 now but the life I have now looking after my wife is all I can look forward to. The guilt really kicks in at times like that.

Sorry this is so negative, from reading the posts on here I am amazed at how many people still manage to keep a sense humour, some of the posts are quite inspiring, promise I will try harder.

Dear Northside,
The future....the scariest place to anticipate.
I have wished for release from this obligation of care. My husband was 49 years old when diagnosed. Our youngest son was 11, the three others at uni. Now 16 years later I am still in the caring role. It has been a gradual change, much more active caring role now than 16 years ago but still not as much as others on TP: I must remain grateful that although he is not the man he was, he is still relatively fit and healthy. As a result of being with me (and totally dependent on me) he has been part of the family's joys,four university graudations, two children married, 4 grand children & and another on the way in November, He has had some kind of life because of our life together and over these 16 years he has had some pleasure and joy.
I miss a real relationship.I do not know what he misses.... I was so angry with him for so long. (and I still get angry sometimes with certain behaviors) I feel I lost my middle age to this disease and now I am old.(I just turned 64). I have to work to stay away from those thoughts and the self pity pot. TP helps me with that.
My husband is physically very fit. It is easy for me to think he will outlive me and easily live a long life (he has been studied by the scientific community as he is so atypical of Early On Set which normally ends in an earlier death-which I must confess I wondered if that would not have been better....but I am not God and do not understand the bigger picture...I am just on the journey) I believe exercise has been the key to his long and relatively physically healthy experience. But what ever it is, if I look at the evidence, he could live to 75 or 80 and I could have another 15 to 20 years of caring to give, I am overhelmed and unable to cope with that kind of thinking. So, I stay in this 24 hours. I gripe when I need to on PT and I do not project into the future or I cannot cope.
I do things that I love, I make sure I see friends and family, I play guitar, I sing in a choir, I sing in a rock n roll band, I go to art exhibitions and to the sinfonie every month and other classical concerts.( I also handle all the finances, do all the shopping, manage the house, do all the cooking, washing and ironing.And the fill in walking on days there is no one to take him. I thankfully have a cleaner once a week and a gardener sometimes)
My husband prefers to walk in nature or sit in his chair watching me work or staring out the window.
I get attention from my males friends on a very superificial level, nothing intimate, which keeps me feminine and alive. I loved a man, my husband, but I still enjoy the masculine perspective conversation and company. After reading the stories of my friends here on TP who married someone late in life and then had a relatively new partner with Alzheimers to care for ....I would never ever enter a committed relationship at this age for fear I would again be in this position. (But as I said I think my husband will outlive me, so I am not availalbe anyway)
I will travel on my own to Greece in June for the wedding of dear friend's daughter. I always feel guilty traveling without Nick. But the truth is that he does better with his routine and taking him to foreign lands and foreign languages does not benefit him. So, I will go and enjoy the much needed break.
THIS is the LONG GOODBYE. My suggestion to you is create a team of volunteers and carers to assist you. Set things up so you can have time away from your role as primary carer. (if you choose to stay the primary carer) It is important is that you must find ways to sustain yourself and have some joy in the life you choose for yourself without guilt. Including if you choose not to be the primary carer...................but whatever you do stay out of the FUTURE, stay in the day where there will be moments of joy and pleasure.

 

[maryjoan]

Dear Northside,
The future....the scariest place to anticipate.
I have wished for release from this obligation of care. My husband was 49 years old when diagnosed. Our youngest son was 11, the three others at uni. Now 16 years later I am still in the caring role. It has been a gradual change, much more active caring role now than 16 years ago but still not as much as others on TP: I must remain grateful that although he is not the man he was, he is still relatively fit and healthy. As a result of being with me (and totally dependent on me) he has been part of the family's joys,four university graudations, two children married, 4 grand children & and another on the way in November, He has had some kind of life because of our life together and over these 16 years he has had some pleasure and joy.
I miss a real relationship.I do not know what he misses.... I was so angry with him for so long. (and I still get angry sometimes with certain behaviors) I feel I lost my middle age to this disease and now I am old.(I just turned 64). I have to work to stay away from those thoughts and the self pity pot. TP helps me with that.
My husband is physically very fit. It is easy for me to think he will outlive me and easily live a long life (he has been studied by the scientific community as he is so atypical of Early On Set which normally ends in an earlier death-which I must confess I wondered if that would not have been better....but I am not God and do not understand the bigger picture...I am just on the journey) I believe exercise has been the key to his long and relatively physically healthy experience. But what ever it is, if I look at the evidence, he could live to 75 or 80 and I could have another 15 to 20 years of caring to give, I am overhelmed and unable to cope with that kind of thinking. So, I stay in this 24 hours. I gripe when I need to on PT and I do not project into the future or I cannot cope.
I do things that I love, I make sure I see friends and family, I play guitar, I sing in a choir, I sing in a rock n roll band, I go to art exhibitions and to the sinfonie every month and other classical concerts.( I also handle all the finances, do all the shopping, manage the house, do all the cooking, washing and ironing.And the fill in walking on days there is no one to take him. I thankfully have a cleaner once a week and a gardener sometimes)
My husband prefers to walk in nature or sit in his chair watching me work or staring out the window.
I get attention from my males friends on a very superificial level, nothing intimate, which keeps me feminine and alive. I loved a man, my husband, but I still enjoy the masculine perspective conversation and company. After reading the stories of my friends here on TP who married someone late in life and then had a relatively new partner with Alzheimers to care for ....I would never ever enter a committed relationship at this age for fear I would again be in this position. (But as I said I think my husband will outlive me, so I am not availalbe anyway)
I will travel on my own to Greece in June for the wedding of dear friend's daughter. I always feel guilty traveling without Nick. But the truth is that he does better with his routine and taking him to foreign lands and foreign languages does not benefit him. So, I will go and enjoy the much needed break.
THIS is the LONG GOODBYE. My suggestion to you is create a team of volunteers and carers to assist you. Set things up so you can have time away from your role as primary carer. (if you choose to stay the primary carer) It is important is that you must find ways to sustain yourself and have some joy in the life you choose for yourself without guilt. Including if you choose not to be the primary carer...................but whatever you do stay out of the FUTURE, stay in the day where there will be moments of joy and pleasure.

This is a really, really inspiring story taking the awfulness of the situation and building a life that was not the life expected or wanted but a fulfilling life in its way. I can only admire you.
It is the longest of goodbyes and this journey where you are both on slightly different paths.....that widen further and further apart as the journey moves on.....

 

[maryjoan]

I was telling someone recently about my situation, my wife is 59 and was diagnosed with Alzheimers 4 years ago. The person I was talking to said her mother had been diagnosed at 59 and had survived until she was 75. I felt awful but my heart really fell in the realisation of what was ahead and the thought that I am 63 now but the life I have now looking after my wife is all I can look forward to. The guilt really kicks in at times like that.

Sorry this is so negative, from reading the posts on here I am amazed at how many people still manage to keep a sense humour, some of the posts are quite inspiring, promise I will try harder.

You don't have to try harder, why should you. Like all of us you have been dealt a devastating blow. You are not negative, none of us are - we are using TP as a sounding board, and putting on here our deepest thoughts, things that we could never say to the outside world.

A sense of humour and the ridiculous is what we use to make this world we live in a little more bearable. I overheard my OH telling his daughter on the phone last night that I had had a wonderful idea and now got all our groceries delivered to the door by Mr Tesco. ERRR REALLY!!! I wanted to shout. I have not had a wonderful idea at all - it is out of sheer necessity due to his dementia. He has lost his driving license, he sold the car, he spent the money from the car, we cannot afford another one, I cannot do the grocery shop using the bus, because I cannot carry everything, even if I had a shopping trolley !!!!

and on we go, all of us, we become faceless friends on here, and that is what supports us....

 

[PalSal]

This is a really, really inspiring story taking the awfulness of the situation and building a life that was not the life expected or wanted but a fulfilling life in its way. I can only admire you.
It is the longest of goodbyes and this journey where you are both on slightly different paths.....that widen further and further apart as the journey moves on.....

Take good care Northside and Marzjoan and all my TP friends, Northside please remember you are doing that best you can do on any given. I like to remind myself of exactly what would happen if I were not around to be here for Nick. And then I do not feel quite so badly about myself when I am not the perfect carer. Good luck and God bless.

 

[Herewego]

Hello Herewego, thanks for your post. Yes you can go that route if you wish. To be honest my brain is so fagged out that I could not cope doing it because of the colossal amount of things which I have to remember to do. The latest thing is I have to take my wife's fasting blood sugar reading and record it for her GP.A letter arrived this morning advising that my wife is on a waiting list to go on a waiting list for diet advice because she is type 2 diabetic.she is on 4 consultants books at the moment so keeping those appointments is a marathon in itself.
All that as well as keeping up to date with housekeeping washing buying and preparing meals.
I will go off at a tangent now. While at the solicitors I asked him about the possibility of the bank putting restrictions on our joint bank account.because of my wife's diagnosis.
Thy can't do it, was his reply, well that is one worry less. This statement is only referring to N Ireland as the law is different here.So it is always wise to seek professional's advice.

I quite understand - really only just suggested it in case someone else read it - I am just glad we did it just before my OH was formally diagnoised as he is so much worse this year that I am not sure I would have the time or energy now either!!

He has just said he is annoyed with me because I won't take him 'home' or 'the other house' as he refers to it - says I am being really mean not taking him there - there is no other house, so this coversation goes around and around 3 x today!! I used to think I had patience - not so sure anymore!

 

[Herewego]

Oh the slow walking! @Herewego Drives me crazy too Mudge. And if I go slower, he goes even more slowly. The other day I thought I’d he went any more slowly, he’d be walking backwards!

I’m afraid in my OHs case he does it more when he’s angry with me, because I’m a fast walker and it’s his way of protesting. When he was annoyed the other day, and I slowed down to accommodate him and to stop him getting lost, he managed to slow down even more. After we’d done what we had to do, at the bank of course, and with him refusing to speak, I’d had enough. The car was in sight, in a straight line from where we were, about 150 metres away, so rather than lie down in the gutter and scream, I set off for it at a cracking pace. Didn’t look back once.

Got to the car. No sooner had I opened the driver’s door than - guess what?! YES! There he was, opening the front left passenger door. Quite a turn of speed he’d put on, hadn’t he? Maybe he thought I might drive off without him!

Love the bit about putting in speed if required! When we were visiting our daughter over Christmas/New Year what I noticed was while going away from where we parked the car, he would walk slowly and continuely ask if we know wher the car is, how far were we going, could we get back, maybe we should turn around etc - however, as soon as we said we were heading to the car or we were almost back to where the car was - all of a sudden he could walk faster and if not with us occassionally ahead of us! Hillarious - he also wants to sit down at almost every seat we come across along the route.

A friend has started taking OH out for a walk (with our dog) for a couple of hours on a Monday - I warned her that he was slow and said I would walk ahead to keep him moving at times - when she came back this week - she said she had doen the same towards the end or they would never have made it back!

The problem is you can't just walk ahead to the car - they would get lost - so I usually walk to the next turn and then wait till he knows I am turning and then just after the turn to make sure he actually does the turn - quite often find him standing at the turn and even tho' I am in his line of sight, it is like he looks every direction except where I am, so usually end up calling his name to get his attention.

Regarding direction - I find he seems to have the 'map inhis head' of our local area back to front, as when I say we have to turen right, he thinks we should be going left - this is something that he has done for several years now - strange as he used to have a very good sense of direction.

 

[NORTHSIDE]

Dear Northside,
The future....the scariest place to anticipate.
I have wished for release from this obligation of care. My husband was 49 years old when diagnosed. Our youngest son was 11, the three others at uni. Now 16 years later I am still in the caring role. It has been a gradual change, much more active caring role now than 16 years ago but still not as much as others on TP: I must remain grateful that although he is not the man he was, he is still relatively fit and healthy. As a result of being with me (and totally dependent on me) he has been part of the family's joys,four university graudations, two children married, 4 grand children & and another on the way in November, He has had some kind of life because of our life together and over these 16 years he has had some pleasure and joy.
I miss a real relationship.I do not know what he misses.... I was so angry with him for so long. (and I still get angry sometimes with certain behaviors) I feel I lost my middle age to this disease and now I am old.(I just turned 64). I have to work to stay away from those thoughts and the self pity pot. TP helps me with that.
My husband is physically very fit. It is easy for me to think he will outlive me and easily live a long life (he has been studied by the scientific community as he is so atypical of Early On Set which normally ends in an earlier death-which I must confess I wondered if that would not have been better....but I am not God and do not understand the bigger picture...I am just on the journey) I believe exercise has been the key to his long and relatively physically healthy experience. But what ever it is, if I look at the evidence, he could live to 75 or 80 and I could have another 15 to 20 years of caring to give, I am overhelmed and unable to cope with that kind of thinking. So, I stay in this 24 hours. I gripe when I need to on PT and I do not project into the future or I cannot cope.
I do things that I love, I make sure I see friends and family, I play guitar, I sing in a choir, I sing in a rock n roll band, I go to art exhibitions and to the sinfonie every month and other classical concerts.( I also handle all the finances, do all the shopping, manage the house, do all the cooking, washing and ironing.And the fill in walking on days there is no one to take him. I thankfully have a cleaner once a week and a gardener sometimes)
My husband prefers to walk in nature or sit in his chair watching me work or staring out the window.
I get attention from my males friends on a very superificial level, nothing intimate, which keeps me feminine and alive. I loved a man, my husband, but I still enjoy the masculine perspective conversation and company. After reading the stories of my friends here on TP who married someone late in life and then had a relatively new partner with Alzheimers to care for ....I would never ever enter a committed relationship at this age for fear I would again be in this position. (But as I said I think my husband will outlive me, so I am not availalbe anyway)
I will travel on my own to Greece in June for the wedding of dear friend's daughter. I always feel guilty traveling without Nick. But the truth is that he does better with his routine and taking him to foreign lands and foreign languages does not benefit him. So, I will go and enjoy the much needed break.
THIS is the LONG GOODBYE. My suggestion to you is create a team of volunteers and carers to assist you. Set things up so you can have time away from your role as primary carer. (if you choose to stay the primary carer) It is important is that you must find ways to sustain yourself and have some joy in the life you choose for yourself without guilt. Including if you choose not to be the primary carer...................but whatever you do stay out of the FUTURE, stay in the day where there will be moments of joy and pleasure.

Hi PalSal thank so much for taking the time to reply to my post. Of course reading your reply I realise I have many things to be thankful for. I do make a point of trying not to think what the future may bring but on this occasion I was a bit taken aback at the impact a throw away remark had made on me.

This is my second marriage, it will be our 20th anniversary later this year, we have been very happy until the onset of Alzheimer's, we have no children although I have two daughters from my first marriage. I can only imagine the additional problems you must have encountered because of the involvement of children. Having said that although I have a good relationship with my daughters I am not able to see them as often as I would like to as, since the onset of Alzheimers, my wife is quite hostile toward them as she is to many of our friends. (I am told she is much more sociable when I leave). As my wife cannot be left alone I find the time I spend with family and friends with her quite stressful and consequently we tend to see less of people despite lots of invitations.

I now have a carer who comes in for two hours twice weekly which enables me to get out to our local pool for some much needed exercise. Although my wife is physically fit and used to love walking she is generally happier to stay at home.

We are fortunate that we have a garden and now the weather is warmer she seems reasonably content to watch me pottering but is not able to help with even the simplest of tasks. I think she does get real enjoyment watching and listening to the birds and from the colour and fragrance of the flowers. I think this acts as an incentive to me to keep on top of things. Funny that it is sometimes the simplest things that can give us the greatest enjoyment.

As usual on TP reading other people's experiences enables us to get a bit of perspective on our own lives and invariably helps to gather ourselves together again from those dark places we sometimes visit ready to face whatever the next day might have in store.

So thanks again for replying, best wishes for the future and I hope you have a wonderful time in Greece.

 

[NORTHSIDE]

You don't have to try harder, why should you. Like all of us you have been dealt a devastating blow. You are not negative, none of us are - we are using TP as a sounding board, and putting on here our deepest thoughts, things that we could never say to the outside world.

A sense of humour and the ridiculous is what we use to make this world we live in a little more bearable. I overheard my OH telling his daughter on the phone last night that I had had a wonderful idea and now got all our groceries delivered to the door by Mr Tesco. ERRR REALLY!!! I wanted to shout. I have not had a wonderful idea at all - it is out of sheer necessity due to his dementia. He has lost his driving license, he sold the car, he spent the money from the car, we cannot afford another one, I cannot do the grocery shop using the bus, because I cannot carry everything, even if I had a shopping trolley !!!!

and on we go, all of us, we become faceless friends on here, and that is what supports us....

Hi Maryjoan, Nice to hear from you. Funny you mention the difficulties of shopping. We do have a car, but it doesn't always help. We drove to our local supermarket last Friday to get the 'big' shop in for the weekend. Having got there my wife refused to go in to the store insisting she was going to see her Dad, (sadly no longer with us). I eventually gave up trying to get her into the shop and on the shopping and instead decided just to head back home. She then refused to get back in the car. Cue stand up row in the middle of the car park. I'm sure people must have thought I was trying to abduct her. Eventually she got into the car but you guessed it she refused to put a seat belt on. It's not easy to put a seat belt on someone who doesn't want to wear one.

I couldn't face going through that again on the Saturday so this weekend we lived mostly on provisions from the freezer and some rhubarb from the garden. I think I make pretty mean rhubarb crumble.

Today was relatively incident free so I'm feeling good again, best wishes and thanks for your post.

 

[maryjoan]

Hi Maryjoan, Nice to hear from you. Funny you mention the difficulties of shopping. We do have a car, but it doesn't always help. We drove to our local supermarket last Friday to get the 'big' shop in for the weekend. Having got there my wife refused to go in to the store insisting she was going to see her Dad, (sadly no longer with us). I eventually gave up trying to get her into the shop and on the shopping and instead decided just to head back home. She then refused to get back in the car. Cue stand up row in the middle of the car park. I'm sure people must have thought I was trying to abduct her. Eventually she got into the car but you guessed it she refused to put a seat belt on. It's not easy to put a seat belt on someone who doesn't want to wear one.

I couldn't face going through that again on the Saturday so this weekend we lived mostly on provisions from the freezer and some rhubarb from the garden. I think I make pretty mean rhubarb crumble.

Today was relatively incident free so I'm feeling good again, best wishes and thanks for your post.

Ah Ah! Rhubarb crumble!! We live in a small village, and I bought some rhubarb the other day at a coffee morning thinkin to make a crumble. I put it in the large fruit bowl in the kitchen - not as a statement, but just for somewhere to put it. Yesterday = long and animated conversation with OH as to whether this was the correct place to put rhubarb even though it is technically a fruit!! 'It's just rhubarb!' said I - I mean, does it really matter, it will be eaten today thu avoiding any other discussions as to where it should be......... Glad yesterday was OK for you and you are feeling good - I hope it continues through today as well.!

take care

 

[GinnyJan]

Ah Ah! Rhubarb crumble!! We live in a small village, and I bought some rhubarb the other day at a coffee morning thinkin to make a crumble. I put it in the large fruit bowl in the kitchen - not as a statement, but just for somewhere to put it. Yesterday = long and animated conversation with OH as to whether this was the correct place to put rhubarb even though it is technically a fruit!! 'It's just rhubarb!' said I - I mean, does it really matter, it will be eaten today thu avoiding any other discussions as to where it should be......... Glad yesterday was OK for you and you are feeling good - I hope it continues through today as well.!

take care

I always thought that rhubarb was actually a vegetable and tomatoes are fruit, though I'm happy to be proved wrong

 

[maryjoan]

I always thought that rhubarb was actually a vegetable and tomatoes are fruit, though I'm happy to be proved wrong

The fruit or vegetable crumble was delicious anyway!!!

 

[Jaqkelly53]

As we do here in TP I could completely relate to your post...the reason I come to TP. My husband is still not in need of a care home he is good with me...but the question is how long can I do it. But I completely relate to your comments about postponing residential care because I am financially better served if he is at home with me. I am not good with financial planning and I have managed to keep us going for these 16 years....(I am 64 and he is 65) it has been a long road. I finished educating all the children and that was where most of our money went and just living. Now I must make our limited funds last until we die. I think it is going to be a tough task. So, I try to just be in the day and grateful all the bills are paid today and we have no debt and some money in savings. If I get too far into the future I panic

 

[Gnasher]

I have just been reading through these threads and want to add, yes I just want to walk away. Cornwall, Scotland both sound good to me but actually anywhere where I could just have some peace, time to myself even. I love my husband but I do not like the person he has become with dementia. I agree that most of the gripes I have are just little things: washing the fork he has done the dogs food with under a cold tap and not putting it in the dishwasher, wiping his hands/face on the dishcloth, not eating/wanting the meals I cook, moaning constantly about everyone and everything, shoplifting, fussing, kidding e very one (women) he meets, I am lucky and our children try to take him or away for a weekend but as soon as he is away from me he wants to come back.."can't live with me but can't live without me".

I have to make him take a bath, change his clothes, wash his his hair all of which lead to more confrontations. The latest is food. He won't eat what I cook (all from fresh) just wants tinned peaches and evaporated milk. Never says thank you or please. Just grunts when I give him anything.

I did a dementia awareness course recently and was told "you are in control". What absolute rubbish the for year old husband with dementia is absolutely in control. My life means nothing.

 

[Grahamstown]

@Gnasher I have some thoughts about your remarks. I feel that I have had to change myself a huge amount in order to cope with my husband’s dementia, but in the changing I have had to assume control over his behaviour by more or less telling him what to do, as in a little boy. In my case I can usually get him to comply but there have been touchy moments when he doesn’t want to and I have to summon all my strength to insist. So I half agree with you about not having control but I have had to seize certain amounts of control just to reach the point I am now. He is now unable to control aspects of his life so I have to do that for him which of course puts a huge brake on my life. This may seem a bit muddled but it is ‘through the looking glass’ life, everything is upside down and inside out and it’s hard to survive at times. What is worse is that family and friends are completely unaware of these daily difficulties and only see a snapshot for a short time so we just struggle on alone unless we have outside carers. TP is a godsend when you are coping alone so we try and support each other. Good wishes to you.

 

[icu2]

I think if anyone claims not to have wanted to walk away then they're either incredibly lucky or lying to themselves. My father has alzheimers - tells me about how deeply unhappy he is, his wife is also deeply unhappy (and then sad when my father is being sweet). It seems an impossible situation but for the moment we'll all soldier on. There's no shame in taling a walk alone - you have to find waya to survive.

 

[icu2]

Yes i can sympathise with your predicament. My wife doesn't know who I am and thinks I am a carer who has just arrived. She is constantly looking for her husband of 40 years ago and refuses to recognise me but sometimes thinks I am her father who she was not too keen on.
A visit to the Medical Centre today was a trial indeed, as she would only go with 'her husband' and that was not me. Eventually got inside but the anxiety made her dementia worse and she could only babble a lot of disconnected incidents which did not help. I cannot give any input in these occasions if we both attend, because she insists I am not 'her husband' and gets furiously angry if I give any information about her condition. We leave and five minutes later she has no memory of being there.