In A World of Pain

[LovingSpouse]

Thanks in advance for reading. Married 22 years. My husband aged 53 changed while working overseas for a year in a very remote location. No flights in and out. He suddenly got agitated and aggravated. Then he asked for a divorce. I spent the last 4 months of it in shock with him being so mean to me over the phone while waiting for him to return home. He had been the most placid caring husband ever so I'm still in shock. He has been back for 4 months and still wants to leave me, but hasn't.

He has barricaded himself in the bedroom and I am on the floor in the living room. He won't let me near him, says he does not love me and has such an empty look on his face all day long.

I have been trying to piece this all together. Most wives would have packed his bag for him long ago in how abusive and unempathetic he is being but I just feel something is not right. I have spoken to someone specialised in dementia seeing as this runs in his family and with all the symptoms I have explained they said they believe it is early onset and I have to get a diagnosis as fast as possible to begin medication. The list of unusual things he is doing and decline in functions is fast growing to match his new personality.

But I just have not read anywhere that a patient wants to leave their spouse in the beginning stages. I can see he doesn't want to be touched or crowded and he is very convincing that he no longer loves me. He bashed his head on a concrete wall when I went near him 2 weeks ago. He has never done anything like that.

I'm not sure if the being away for a year as this escalated may have had this effect. It is breaking my heart. I have ended up in hospital myself from the stress as I love him so much. No empathy from him despite always being so caring for me. I want to be there to help him but he seems so unhappy around me. He can be happy around others for short times when we are both out.

From the outside this would appear he just does not want to be with me. But It Is all the other symptoms that make me not want to give up. He is free to go and choosing not to. He doesn't seem to know why himself. He doesn't have answers for anything. He says he feels lost and there is something inside of him he can not explain.

We had such a close relationship and I know even if he had to do something difficult he would have done it in the kindest way. He has handled this the complete opposite. I'm in for a bit of a wait on the diagnosis but just wondering if pushing away a spouse at the beginning is being experienced by others.

It is so hard to not take this personal. He will approach me to yell in my face he does not want to be my husband. Other times he is calm and settled in. Really grieving so much with this beautiful husband in front of me I am only allowed to love from accross the room

 

[Izzy]

Welcome to the forum @LovingSpouse.

How incredibly sad - no wonder you feel as you do. It would be good to have his GP see him but I understand that this might be difficult. I wondered if you could write to his GP and explain your concerns for him. Perhaps the GP would be willing to call him in for something like a ‘routine appointment’ or a. ‘Well man appointment’ or some such.

Sorry not to be of more help. You might find it useful to talk to someone on the Support Line -

Contact us

Find out how to get in touch with Alzheimer's Society by phone, email, post or online.

www.alzheimers.org.uk

I’m glad you’ve found this forum. I know you will find understanding and support here.

 

[canary]

Hello @LovingSpouse

My OH doesnt have a diagnosis either, but I am certain that he has some form of early onset dementia.

At the beginning the main symptom was change of personality. he became angry, accusing me of treating him like a child, telling him what to do and think and thought that I was preventing him from doing things. He had lost insight into his own symptoms and although he was aware that things were not right, he thought that it was me that was causing it.

He had lost empathy and was unable to see how I was feeling.
One day he had a lucid moment and was able to tell me that he felt like there was a block in his emotions, so he was unable to reach them and everyone around him seemed cold and unfeeling. Needless to say, to me it seemed the other way round and it was him that seemed cold and unfeeling.

I should think that if you think your spouse has suddenly become cold and unfeeling and is purposely messing things up for you and trying to take you over, then you wouldnt want to stay married to them. I have been told that many people who develop FTD want to (or actually do) leave their partners. I have often wondered what would have happened if we had indeed split up. He is still at home and would no longer be at all capable of initiating divorce now. He is now passive and totally dependant on me and in many ways this is easier, but I have lost the person he once was.

(((((((((((((((((((((((((hugs))))))))))))))))))

 

[northumbrian_k]

Hi @LovingSpouse and welcome to Dementia Support Forum. I am so sorry to hear about your husband but can't offer anything other than empathy as I have no direct experience of such a situation. It was the case that my wife used to say we should split up so that I could meet someone else and have the family I never wanted. But that was just one of many strange things she said as her Alzheimer's Disease progressed and I never took it seriously. What you are facing seems much more serious and difficult to deal with. It will be hard to do but the best way forward would be to get him to seek medical opinion and hopefully a diagnosis or explanation of what may be behind his behaviour. Depending upon that you may then need to face the prospect of looking after someone whom you love but who no longer reciprocates or walking away. Either course is bound to bring heartache. There's little practical help that we can give you, but I hope that by being able to share with us you feel less alone in dealing with whatever the future holds.

 

[Violet Jane]

He definitely needs to see a doctor. There could be conditions other than dementia. Depression is one example. PTSD is another. Is it possible that something traumatic happened in that remote area that you're unaware of? However, getting him to a doctor is easier said than done. I would write to his GP and explain what's going on. Make it very clear that you think that this is not just a marital problem. Emphasise the loss of function and any other worrying behaviours.

Have you spoken to his family and friends about this behaviour? They might have some insight into what's going on.

 

[LovingSpouse]

Thank you so much for the kindness and support. That really means a lot to me. Bless you all and hugs back.

To add to the full experience we have seen our family doctor several times. Full bloods were done including hormone levels and nothing was wrong there. He had a CT scan 2 months ago and nothing showed so up so I dismissed it with bewilderment. I only found out this week some types don't show up on a scan or earliest stages on others.

We have been to psychologists, counsellors, marriage counselling and he is booked in to see a psychiatrist. I have been seeing a psychologist myself also. Nobody can profile him because he is all over the shop. Nothing is consistent to what you can say it could be that. None of the professionals have guessed dementia and I did not bring it up due to CT scan results.

He did have an accident at work last year and I noticed strangeness after that and 6 weeks later he snapped. He fell through ice into the ocean. Would have been freezing and he can't swim so would have panicked. But he walked back out on ice after and is such a no worry guy in his true personality PTSD was ruled out. But maybe it shocked his brain though and wondering if dementia can be triggered. He fully submerged and was quickly pulled out by his team.

He has been the kindest, most loving, most patient and sensitive husband ever. I have always suspected he is on the spectrum with Aspergers but that did not affect his kindness. It was other things. That may not be helping if the two conditions collide.

After he psychotically hit his head on the concrete wall and in fact his whole body for more than 30 seconds he packed his bags and left. Said he would send someone for the rest of his things. I thought I would never see him again. But about 3 hours later he was back with pizza for dinner.

The following day I found him on the side of the road. He blew the motor on our car for not putting water in the radiator when he knew he had to. He looked up at me with his real eyes and said he was sad and that he felt things even though he doesn't show it. It was a beautiful moment between us and I treasure it. When I speak of it now he does not connect with it.

He acts like he hates me but states he doesn't hate me and says I have been a great wife. If I bring up our life and what I have put into our life he calls it emotional manipulation. No logic, no reasoning and no love gets through to him. He said he loves me the other day but just as an individual like he is an individual and I am an individual was his words.

Before he left for the year I checked in if he was happy and loved me and wanted to be married to me and he said yes and looked at me like I was crazy for asking. I'm so glad I have that memory.

We always had an agreement we would never hurt each other if our marriage got rocky and would do everything to save it. He says he doesn't care about our agreement and his cruel words each day break me to where I think a drunk would be kinder. He doesn't drink at all or do any drugs.

At the councelling he just said straight up he doesn't want our relationship so nobody could help us. He understands that goes against our agreement but does not care. He also said he doesn't care if he doesn't keep his promises to me and the girls. He has become a pathological liar about big and small things. He knows I think he has dementia and says he is fine but doesn't seem to make an effort to withhold information of things he can't do now or what he forgets. If he had the capacity I feel he would hide it.

I caught him having an emotional affair a few weeks ago. He said he was awful for doing that and ended it. I didn't know why he ended it if he doesn't want to be with me. Seems more a symptom that what is driving his behavior.

Nothing makes sense and goes with his 20 alarms on his phone each day to remember anything he needs to remember. He use to have the highest ethics and morals I struggled to keep up with. Now he has none.

He has ticked every box to break and confuse me. But he is still here. While he is I want to find out what is wrong but I feel such great pressure worrying if he will leave before I get answers. Part of me feels like if it's not dementia and he really just doesn't want to be with me because of a midlife crisis I'm going to look like an idiot with his family. I have little family support myself.

I have CPTSD myself from long awful trauma before I met him. This trauma feels worse. He is triggering me in rejection and abandonment and knows that but does not care. I cry so much every day because I miss my best friend also. The situation is awful. Trying to be strong but at this point only for answers and hope.

Thanks for a place to vent.

 

[Kevinl]

I cry when I read things on here posting through to many tears, have go before my phone breaks. Love. K

 

[Suzysheep01]

I’m so sorry you are going through such a rough time. Absolutely heartbreaking for you.
I think the best thing to do is speak to his gp and explain everything that is going on. is your husband on any medication? This could need adjusting?
my son is on the autistic spectrum and head banging in frustration is something he occasionally does.
something has or is overwhelming him. Be it dementia or a mental health issue.

 

[annieka 56]

Thank you so much for the kindness and support. That really means a lot to me. Bless you all and hugs back.

To add to the full experience we have seen our family doctor several times. Full bloods were done including hormone levels and nothing was wrong there. He had a CT scan 2 months ago and nothing showed so up so I dismissed it with bewilderment. I only found out this week some types don't show up on a scan or earliest stages on others.

We have been to psychologists, counsellors, marriage counselling and he is booked in to see a psychiatrist. I have been seeing a psychologist myself also. Nobody can profile him because he is all over the shop. Nothing is consistent to what you can say it could be that. None of the professionals have guessed dementia and I did not bring it up due to CT scan results.

He did have an accident at work last year and I noticed strangeness after that and 6 weeks later he snapped. He fell through ice into the ocean. Would have been freezing and he can't swim so would have panicked. But he walked back out on ice after and is such a no worry guy in his true personality PTSD was ruled out. But maybe it shocked his brain though and wondering if dementia can be triggered. He fully submerged and was quickly pulled out by his team.

He has been the kindest, most loving, most patient and sensitive husband ever. I have always suspected he is on the spectrum with Aspergers but that did not affect his kindness. It was other things. That may not be helping if the two conditions collide.

After he psychotically hit his head on the concrete wall and in fact his whole body for more than 30 seconds he packed his bags and left. Said he would send someone for the rest of his things. I thought I would never see him again. But about 3 hours later he was back with pizza for dinner.

The following day I found him on the side of the road. He blew the motor on our car for not putting water in the radiator when he knew he had to. He looked up at me with his real eyes and said he was sad and that he felt things even though he doesn't show it. It was a beautiful moment between us and I treasure it. When I speak of it now he does not connect with it.

He acts like he hates me but states he doesn't hate me and says I have been a great wife. If I bring up our life and what I have put into our life he calls it emotional manipulation. No logic, no reasoning and no love gets through to him. He said he loves me the other day but just as an individual like he is an individual and I am an individual was his words.

Before he left for the year I checked in if he was happy and loved me and wanted to be married to me and he said yes and looked at me like I was crazy for asking. I'm so glad I have that memory.

We always had an agreement we would never hurt each other if our marriage got rocky and would do everything to save it. He says he doesn't care about our agreement and his cruel words each day break me to where I think a drunk would be kinder. He doesn't drink at all or do any drugs.

At the councelling he just said straight up he doesn't want our relationship so nobody could help us. He understands that goes against our agreement but does not care. He also said he doesn't care if he doesn't keep his promises to me and the girls. He has become a pathological liar about big and small things. He knows I think he has dementia and says he is fine but doesn't seem to make an effort to withhold information of things he can't do now or what he forgets. If he had the capacity I feel he would hide it.

I caught him having an emotional affair a few weeks ago. He said he was awful for doing that and ended it. I didn't know why he ended it if he doesn't want to be with me. Seems more a symptom that what is driving his behavior.

Nothing makes sense and goes with his 20 alarms on his phone each day to remember anything he needs to remember. He use to have the highest ethics and morals I struggled to keep up with. Now he has none.

He has ticked every box to break and confuse me. But he is still here. While he is I want to find out what is wrong but I feel such great pressure worrying if he will leave before I get answers. Part of me feels like if it's not dementia and he really just doesn't want to be with me because of a midlife crisis I'm going to look like an idiot with his family. I have little family support myself.

I have CPTSD myself from long awful trauma before I met him. This trauma feels worse. He is triggering me in rejection and abandonment and knows that but does not care. I cry so much every day because I miss my best friend also. The situation is awful. Trying to be strong but at this point only for answers and hope.

Thanks for a place to vent.

This sounds sad and difficult for you.

I looked back to your original post and he was shouting in your face "I don't want to be your husband." And before that while working away, saying that he wanted a divorce.

I don't know when that was but since then you say he's had blood tests, a CT scan, seen psychologists, counsellors and you have had marriage counselling where he said he doesn't want your relationship.

If you're worried about his health I am sure he knows how to manage it, he obviously sees the GP, makes appointments on his own and hopefully attends them on his own.

I hope you will look after your own precious health, good luck.

 

[Grannie G]

Hello @LovingSpouse

My husband pushed me away at least 5 years before diagnosis. He had a complete change of personality and I really thought our marriage was coming to an end and had been together 37 years.

He was quite nasty to me and I bore it in silence. I really didn’t know what to do or how to handle the situation.

We ended up living in separate parts of the house, including separate bedrooms, on his insistence not mine.

I understand what a terrible time you are having and can only suggest you persevere with seeking medical advice even secretly.

I had to wait at least 5 years before we got a diagnosis and don’t know to this day how I managed to live through this time. I couldn’t leave him because I felt he was at risk and it would have felt like leaving a sinking ship.

There’s a lot more to our story which I prefer not to disclose but enough to say it was beyond being hurtful

I hope you will be able to stay with your husband and get a diagnosis eventually but you have a hard road ahead and I want you to take as much help as you can get.

If it`s any consolation life did improve gradually after diagnosis but it was a rough ride for a long time.

 

[LovingSpouse]

Hello @LovingSpouse

My husband pushed me away at least 5 years before diagnosis. He had a complete change of personality and I really thought our marriage was coming to an end and had been together 37 years.

He was quite nasty to me and I bore it in silence. I really didn’t know what to do or how to handle the situation.

We ended up living in separate parts of the house, including separate bedrooms, on his insistence not mine.

I understand what a terrible time you are having and can only suggest you persevere with seeking medical advice even secretly.

I had to wait at least 5 years before we got a diagnosis and don’t know to this day how I managed to live through this time. I couldn’t leave him because I felt he was at risk and it would have felt like leaving a sinking ship.

There’s a lot more to our story which I prefer not to disclose but enough to say it was beyond being hurtful

I hope you will be able to stay with your husband and get a diagnosis eventually but you have a hard road ahead and I want you to take as much help as you can get.

If it`s any consolation life did improve gradually after diagnosis but it was a rough ride for a long time.

Thank you for these words. It gave me hope. Five years is a long time to wait on a diagnosis. Can I ask if it did not show on a scan or was it some other reason it took so long. I have discussed it with dementia professionals and they said to keep advocating for him but it seems to be a battle with the ones who actually diagnose. I would do anything for him. I will hang in there as you did for the same reason. I can't abandon him. I am sure it has been so very tough for you and wish I could give you a hug.

 

[Grannie G]

We waited so long @LovingSpouse because

1. We relocated to live near our son by the seaside and he wanted it as much as I did. Even though we still had the same personal problems, I lived in hope life would improve once we were living by the sea and near our son.

2. Once we had relocated he told me it was the biggest mistake he had made in his life. I agreed we`d sell our new bungalow and return to Bury. We had two buyers for the bungalow and at the last minute on both occasions, my husband backed down because he thought our son would be upset.

This made me realise something serious was happening, which was when I consulted our GP in private.
The GP treated my husband for depression for a year before finally agreeing to him having a scan.
The scan showed brain shrinkage.
Alzheimer`s was diagnosed.

 

[GlennBurch]

Your husband is going through major changes that may be related to dementia or other psychological problems. It is important to get professional medical advice as soon as possible to find out what is going on. You are not alone, and there are many resources and supports for people in similar situations. Be patient and take care of yourself first so that you can help your husband whenever possible.