Disappearing before my eyes

[B72]

Not in the position of many of you, I know. It’s early days for me and my OH. But the man I know is disappearing and I feel so sad and bereaved.

We had a blip in the summer, and I thought we were getting back to a previous pattern, but perhaps I just got used to it. Now, I sometimes/frequently feel he’s behaving like a child, not my partner. I shouldn’t complain, it could be, will no doubt be, much, much worse. He hasn’t been diagnosed yet. Is it harder to diagnose very intelligent people, because they can answer questions for a longer time?

Yes, I ‘m getting used to taking responsibility for things he’s always has done. I used to/still do find it hard sometimes but what I also find find hard, is when he just lets me. No pleasing me! But he’s aware, and frequently feels bad about it. I suppose that will go.

I tried to tell my son over the phone (he lives a long way away) and realised he was only listening with half an ear, whilst he did something else! So much for family support.

 

[karaokePete]

Caring can put you in a lonely place and the feelings about a changing relationship are probably common. I too have felt both these things.

Whilst there is always the support you will get here, you may get some value out of seeking support services in your area and you can do a post code check if you follow this link https://www.alzheimers.org.uk/find-support-near-you.

If you are talking about passing the quick 30 question MMSE test, then yes, intelligent/well read people can do well on that for a long time. My wife breezes that most times but most certainly has dementia. I sometimes wonder how well she would do if they even changed the questions!

 

[sarahsea]

I very much relate to your comments Bel72. It's also early days for my husband - diagnosed with dementia (probably early onset Alzheimer's) last November. We've been married just under 4 years and I think we had maybe 6 months before the dementia started to show itself. He was a very intelligent man and we had far reaching conversations and discussions about everything under the sun. No more. His number skills are still quite good, but his vocabulary is seriously depleted and seems to worsen weekly. He has trouble following conversations and is content with his puzzle books, daytime TV and going out for short walks.

Shortly after we met and I'd introduced him to some of my friends, he would often say that they seemed very nice but they weren't very intelligent. I replied that actually they were intelligent, but in any case I chose my friends by other qualities, for example - compassion, kindness and a sense of humour. Now I see the importance of cognitive ability more clearly than ever before. I would love my husband to be able to express his intelligence like he could when we first met. I miss those conversations and heated debates, planning things together, making decisions and being able to socialise with others. Like you, I can see my husband disappearing before my eyes. I simply don't recognise him as the man I married.

The irony is that while I'm desperate to have an intelligent conversation with my intelligent husband, but accept that will never happen, what he needs now is a wife with kindness, compassion and a sense of humour, and he's got me - tired, depressed and cranky.

I wish you well Bel72 and I hope that you find a way through this journey and support along the way. TP is full of lovely helpful people with first hand experience and advice which is so valuable. Take care.

 

[AliceA]

Not in the position of many of you, I know. It’s early days for me and my OH. But the man I know is disappearing and I feel so sad and bereaved.

We had a blip in the summer, and I thought we were getting back to a previous pattern, but perhaps I just got used to it. Now, I sometimes/frequently feel he’s behaving like a child, not my partner. I shouldn’t complain, it could be, will no doubt be, much, much worse. He hasn’t been diagnosed yet. Is it harder to diagnose very intelligent people, because they can answer questions for a longer time?

Yes, I ‘m getting used to taking responsibility for things he’s always has done. I used to/still do find it hard sometimes but what I also find find hard, is when he just lets me. No pleasing me! But he’s aware, and frequently feels bad about it. I suppose that will go.

I tried to tell my son over the phone (he lives a long way away) and realised he was only listening with half an ear, whilst he did something else! So much for family support.

Yes, we go through very real grief, I remember the first time I struggled and there was no strong hand offered just curious but a detached pair of eyes! Sometimes there is a flare of interest in starting something but it fades before job is finished. Now I have adapted, but I can still be caught out. Yes, it is really irritating when someone phones and one can hear the clicks of a gadget being used! I had a medical procedure last week again tomorrow but one close family member who should know better has not enquired. I am just trying to be very Zen about it. Not easy at all! I really believe some family just cannot deal with it all. No help for us though is it?

 

[padmag]

Not in the position of many of you, I know. It’s early days for me and my OH. But the man I know is disappearing and I feel so sad and bereaved.

We had a blip in the summer, and I thought we were getting back to a previous pattern, but perhaps I just got used to it. Now, I sometimes/frequently feel he’s behaving like a child, not my partner. I shouldn’t complain, it could be, will no doubt be, much, much worse. He hasn’t been diagnosed yet. Is it harder to diagnose very intelligent people, because they can answer questions for a longer time?

Yes, I ‘m getting used to taking responsibility for things he’s always has done. I used to/still do find it hard sometimes but what I also find find hard, is when he just lets me. No pleasing me! But he’s aware, and frequently feels bad about it. I suppose that will go.

I tried to tell my son over the phone (he lives a long way away) and realised he was only listening with half an ear, whilst he did something else! So much for family support.

Hello Bel72 welcome. I am sorry this is happening to you. Richard is a lot further on the way, but I remember clearly clinging on to activities and being knocked back in the realisation that they dropped off gradually. This includes social interaction (he has some inappropriate behaviour not bad but not pc!)In my experience I have had to change over the years to adjust to his abilities/our relationship. At some point I realised he was contented in his own world and I should be grateful for that, and still am. I hope you manage to cope and adjust.
Re family, I understand your comments. I find that unless someone has had first hand experience and lived with a person with dementia it is very hard for them understand fully.
Keep posting for help.

 

[canary]

Yes, my OH is disappearing in front of my eyes too. He too was a very intelligent man and can pass the short memory tests easily, but is entirely unable to perform tasks that he used to be able to do. He was once a very practical man and was always doing gardening and DIY, but now he cannot work out how to put a screw into a wall or tell the difference between a plant and a weed. He spends his time in the conservatory on his android. Once we would have had good conversations about everything around us, but now he is either unaware of what is going on or if I try and add my own thoughts he thinks i am arguing with him or telling him what to think. He is also unaware of my feeling and is entirely focused on his own needs and wants.

It is indeed very lonely and the feeling of being bereaved even though you are still married is very common. Someone on here coined a term for it - "middow", a married widdow

 

[vmmh]

Bel72
I remember the early days of my husband's diagnosis, at first labeled as mild cognitive disorder. We are now 6 years plus into this journey, still no definitive diagnosis, just using Alzheimer's. Each and every day I have watched my husband slipping further and further away. We had been so close to each other. He was the most lovable and caring man I had ever known. Now he smiles at me and once in a while he may put his arms around me but that is the extend of his former self left. He doesn't speak much, just a word or two here and there. Unfortunately with this disease there is nothing to be done. So I have slowly taken over all household duties and have often cried about not having anyone to share decisions with. I have had to decide about moving us 100 miles from our previous home, filing for POA papers, then having to use the POA papers to sell his past home, then our past home and property. I had to decide to let his driver's license expire and have made a million other decisions on his/our behalf. Not to mention all the medical issues that have arisen. All of it has been very distressing. I have asked family members and co-workers, and friends for their input into decisions but in the end I realized I am the one that must decide. So as you head into this awful journey please don't be too hard on yourself and realize that it will be difficult. Hold onto the positive things as you can and let the trivial things go. Don't argue with him because it will accomplish nothing. Be as supportive of him as you can, and say to heck with those that can't or don't understand.Try, try, try to do something for yourself once in a while and always remember why you married the man you married and that if he could show you his love, he would. My husband used to tell me when I complained about how hard things were for me, that it wasn't easy for him either. So be as kind as you can and remember it is the disease, not him. Be strong and cry when you need to. Be prepared for ups and downs, perpetual roller coaster, as things progress. I hope I haven't come off as to harsh or depressing. Apologies if it sounds that way.

 

[kindred]

Bel72
I remember the early days of my husband's diagnosis, at first labeled as mild cognitive disorder. We are now 6 years plus into this journey, still no definitive diagnosis, just using Alzheimer's. Each and every day I have watched my husband slipping further and further away. We had been so close to each other. He was the most lovable and caring man I had ever known. Now he smiles at me and once in a while he may put his arms around me but that is the extend of his former self left. He doesn't speak much, just a word or two here and there. Unfortunately with this disease there is nothing to be done. So I have slowly taken over all household duties and have often cried about not having anyone to share decisions with. I have had to decide about moving us 100 miles from our previous home, filing for POA papers, then having to use the POA papers to sell his past home, then our past home and property. I had to decide to let his driver's license expire and have made a million other decisions on his/our behalf. Not to mention all the medical issues that have arisen. All of it has been very distressing. I have asked family members and co-workers, and friends for their input into decisions but in the end I realized I am the one that must decide. So as you head into this awful journey please don't be too hard on yourself and realize that it will be difficult. Hold onto the positive things as you can and let the trivial things go. Don't argue with him because it will accomplish nothing. Be as supportive of him as you can, and say to heck with those that can't or don't understand.Try, try, try to do something for yourself once in a while and always remember why you married the man you married and that if he could show you his love, he would. My husband used to tell me when I complained about how hard things were for me, that it wasn't easy for him either. So be as kind as you can and remember it is the disease, not him. Be strong and cry when you need to. Be prepared for ups and downs, perpetual roller coaster, as things progress. I hope I haven't come off as to harsh or depressing. Apologies if it sounds that way.

No, not depressing, compassionate and realistic and loving. When my husband entered what I can only call severe dementia and I was sole carer, in the middle of all his awful ways, and we all know what I mean, he suddenly said to me
I wish you didn't have to go through this, I am so sorry.

That is the man I married and I will love forever.
Thank you so much for your post.
Kindred.xx

 

[Izzy]

I'm so sorry to read of your husband's situation @Bel72. Like others I can very much identify with how you feel. It's common to look on this as a kind of anticipatory grief and I know how hard that is.

You can see from other posts here that you are not alone and I hope that sharing here has helped a little.

I wondered if this information about grief would be of any help to you. It's not looking just a grief after a death but the loss of someone to dementia as well -

https://www.alzheimers.org.uk/get-s...care/grief-loss-and-bereavement#content-start

 

[B72]

Thank you all for your replies. Just felt the need to say something.

 

[Midlands]

Family really let you down

 

[PalSal]

D

I very much relate to your comments Bel72. It's also early days for my husband - diagnosed with dementia (probably early onset Alzheimer's) last November. We've been married just under 4 years and I think we had maybe 6 months before the dementia started to show itself. He was a very intelligent man and we had far reaching conversations and discussions about everything under the sun. No more. His number skills are still quite good, but his vocabulary is seriously depleted and seems to worsen weekly. He has trouble following conversations and is content with his puzzle books, daytime TV and going out for short walks.

Shortly after we met and I'd introduced him to some of my friends, he would often say that they seemed very nice but they weren't very intelligent. I replied that actually they were intelligent, but in any case I chose my friends by other qualities, for example - compassion, kindness and a sense of humour. Now I see the importance of cognitive ability more clearly than ever before. I would love my husband to be able to express his intelligence like he could when we first met. I miss those conversations and heated debates, planning things together, making decisions and being able to socialise with others. Like you, I can see my husband disappearing before my eyes. I simply don't recognise him as the man I married.

The irony is that while I'm desperate to have an intelligent conversation with my intelligent husband, but accept that will never happen, what he needs now is a wife with kindness, compassion and a sense of humour, and he's got me - tired, depressed and cranky.

I wish you well Bel72 and I hope that you find a way through this journey and support along the way. TP is full of lovely helpful people with first hand experience and advice which is so valuable. Take care.

@sarahsea
I, too, had a very intelligent husband who was struck down by this disease early in life, he was an executive with a global corporation. He had lived in 14 countries , spoke three languages and could sort of speak a fourth. Travelled the world was comfortable in his own skin and a wonderful father, a fabulous stepfather, a lovely friend and hubby. He came up with solutions in his forties to compensate for his failing memory (installing barcode readers etc to read long number sequences), always greeted friends (who I am now sure he did not know) with curtesy and kindness. But it could not stop his diagnsis. Perhaps here in Switzerland, there are more in depth diagnosis but I think not, he had an MRI and a PET scan which showed the disease in progress. That was 16 years ago.
I have often mourned the loss of my husband. Sometimes, I have small glimpses of his humor and the man he was, even today. He deserved a better wife and carer less 'tired, depressed and cranky' partner. But I am it. I do the best I can for him each day, but we were considerably younger than many in the early days of this TP site (now there is a separate forum for Early ON Set) for Alz diagnosis. I had to get on with my life, and work and get my children educated. I am not always the perfect carer, but somedays I am a damned good one. So, what I am trying to say is do not be too hard on yourself. It is alot to take in, but I suggest you must create some independence for yourself early on, especially if you are young (I guess even if one isnt particularly young, personal freedoms are important...), For me, I need to feel, I too, am not given over to the disease.
Otherwise, there are two victims, not one.

 

[B72]

Thanks for this PalSal. I’m not young, but I’m a strong, independent character and not normally given to self pity. Very thankful for the close bond and the many years we’ve had together. I know there are many infinitely worse scenarios. Just got to get on with it. (But hard not to succumb occasionally.)

(Better the occasional moan here, than upsetting the one child who finds it all so hard but cares in a practical way and talking to the one who can’t cope with the situation at all.)

 

[Origano]

Hallo everyone whose stories I am reading. It makes me understand that so many people are going through what is happening to us, the suffering my husband has been through and what I have experienced in recent years. He is now in a nursing home and in what I think you would call late stage dementia. He is being extremely well cared for, the home is very close to me and I feel I am with him still. I try to be there every day and stay with him for as long as I can. This is helping me and I think, perhaps naively, that it is helping him. He knows it’s me when I come, although doesn’t speak. I chat about what I am doing, help with feeding sometimes and sadly watch his deterioration. Sometimes I get a little smile or acknowledgement. I obviously find this unbearably painful and can only take comfort in remembering our life together. I am trying to remember the clever, fun loving and happy boy I met all those years ago. We’ve had so many years, although it feels now that they have been extremely short, which is obviously not true as he is eighty five and I am eighty two. I must always remember that my mother was only forty seven when she died of cancer, after a lot of years with the illness and my father must have gone through a similar experience.

The carers at the home are marvelous. I realize I could not care for him in this way
now. My children were very persuasive that I should take this course as they all live a good distance away and could not help a lot. However, it is an expensive business, but worrying about how financially secure you want to feel in your old age just goes out the window when you are faced with this kind of situation.

I am getting used to living on my own, although at times, I can’t really bear it and especially at Christmas, it can all seem pointless. I am constantly telling myself to buck up and get on with things! But at other times I remember I have been relieved of so much responsibility of taking care of my husband and I’ve been taking up my old hobbies and plan to do more. Visiting him does give structure to my day and I have to turn my feelings around and remember he would want the best for me. We never spoke about his condition, except that just once he looked at me very closely and said “. I’m finished”. I think he was saying “you take over now”.

 

[Grannie G]

Hello @Origano

I'm sure your husband knows you are with him, no matter how unable he is to acknowledge your presence. Your visits are for both of you. The contact is comforting.

It's how I felt when I sat with my husband. We were both relaxed and our communication was mainly by touch. We were together in body and spirit even if not in mind.

There is no need to `buck up` and get on with things. You can be as you feel. I drifted a lot when my husband was in residential care and after he died. It was fine. It felt natural to me and I had no need to justify myself to anyone.

Special days and dates are a big test. I just see it as part of life. It's OK to have moments of sadness in the same way it's OK to have moments of happiness.