This is NOT my husband!

[Trixxie]

My hubby was diagnosed with early onset Alzheimer's over 19 months ago at the young age of just 54, there has been a slow gradual decline in his memory & functioning and he's regularly tested at our local memory clinic, still working albeit a very easy job for him But..... He's recently been getting very emotional & argumentative at times and quite verbal towards me saying it's all my fault he's got Alzheimers, it's all my fault this, it's all my fault that, everything is my fault it seems!!!. This is so NOT my husband of 35 years. Is this normal? Are we at the next stage of the Alzheimers journey? He only takes Donezepril, he's always been up beat & happy-go-lucky, popular in our area, but things are changing with him much quicker than I thought it would,
Would love some feedback from you lovely people please X


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[Alicenutter]

He may be very upset that he has this terrible disease, and he's expressing his distress. To you, because he trusts you. Just an idea... Good luck and love xxx


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[malc]

he's also probably terrified it's all slipping away and there is nothing he can do about it,same position my wife is now 46,6 years since diagnosis,similiar feelings,

 

[Hellyg]

Trixxie, I know our husbands were diagnosed at similar times, so I feel like you are part of my journey, there big hugs that things are getting worse for you guys

My husband's diagnosis has changed from early on set Alzheimer's to frontal temporal dementia, although they still say it is an uncertain diagnosis. However he also blames me for things, in particular his lack of understanding when I expain things. His FTD diagnosis is the semantic variant, so it language in particular he misunderstands. He verbally abuses me and calls me useless (in far stronger words than that), not what he would have done, always treated me as a lady. However then in more lucid moments or the next day he will say it is him that is useless and not me, so I think that maybe he transfers his frustration with himself and not understanding to me.

He also now hates what he has, when diagnosed he wasn't bothered, indeed he was pleased it was not cancer. Now he has realised that he is getting worse that he cannot do, the things he used to. He is depressed and frustrated by it. Therefore it seems to have taken longer to impact that him and for the realisation to take place.

Not sure if this is part of it. Is your husband on anti depressants, it might be worth thinking about. Message me of you want to chat off line xx

 

[Zana]

Trixxie.
You could have been me writing that post ,,, last year my husband was in that frame of mind especially during all the testing..

Ive learned what triggers him and so Ive learned to keep my voice neutral and not to surprise him with off the cuff comments that confuse him.
I try to bear in mind that because he has no/ very limited social limits he will use words that are much stronger or hurtful than he intends.


Not that I would wish this on anyone but it is nice to see younger people posting..
My husband is now 58 but this has been going on for at least 3 years and the majority of services and groups seem to focus on much older people..

 

[Grannie G]

This was my husband Trixxie.

He blamed me for everything and gave me credit for nothing.

He was frightened and angry and took it out on me. It took me a long time to realise that and it was very painful at the time.

I have no answers but it is your husband Trixxie and he is ill.

 

[maryw]

I know this too and it leaves you bewildered and longing to find the husband you once knew. There are also moments of self-doubt... "Is it me? What am I doing wrong?".

Slowly and surely from reading this forum and others and gaining knowledge, I am learning to become less reactive and more accepting of what is, always reminding myself it is worse for him than me. It is a huge learning curve and, yes, it's sad.

As others have said, maintaining calm is probably the best thing you can do. I avoid questions, agree with what he says and walk away if his tone sounds aggressive. Taking time out for you is a necessity too. Also focus on the positive, remind yourself of the special moments even if they are much rarer and give yourself a pat on the back for being there for him as that is what love is all about. Life doesn't work out as planned and, yes, we just have to learn to accept what is. It's difficult xx

 

[marionq]

If my husband stubbed his toe he would say it was my fault for putting the obstacle there! However he always did have a tendency to do this and I recall my daughters telling him how ridiculous he sounded. So did the symptoms of Alz start 30 years ago or is this just him? I take no notice of his blame game any more and just do what is necessary to move on. It is probably a release of emotion to feel everything bad is someone else's fault.

 

[tss502]

So sorry to hear this Trixxie. My husband (also mid-50s) hasn't started saying things like this but he does seem to be getting more restless at night. Last night he got up and started making a cup of tea at just after midnight. I thought, 'I'll leave him, if he wants a cup of tea he can have one' but then he came upstairs and switched the bedroom light on to ask me if I wanted one! He snapped at me when I told him it was the middle of the night and said 'well I didn't want a cup of tea'. Such a strange disease. I think your husband is scared and taking it out on the person closest to him. I'd maybe see about antidepressants, or perhaps getting someone else in to help as a new focus might help shift his perspective. My husband now has a companion coming in twice a week when I am out at work - they go cycling together - and he is much more positive, but also I feel reassured that he is safer.

I do identify with the feeling of 'this is no longer the man I married'. It can be so painful and you do feel so alone. I'm not sure there are any easy answers to that one.

 

[Scarlett123]

I'm so sorry to read of the problems so many of you carers are experiencing, especially when your husbands are so young. There's no definitive path that everyone follows, but blaming your loved one is a common theme. My caring years were educational, and I learned an awful lot along the way, but so much was trial and error.

But one of the most valuable lessons I learned, was that it was less distressing for both of us to just go with the flow. I knew it wasn't my fault that John couldn't remember where he'd put his keys/glasses/shoes etc, even though he accused me of deliberately hiding them, but I found it easier to apologise, and then try to look for the missing items.

My apology usually calmed things down, and I became quite an expert at looking in the least likely places for things. Keys were often found in the freezer, glasses with the bread, and shoes in the bin. One of the most distressing incidents for me, was when I heard him crying in the garage, because he'd forgotten how to wire a plug, even though he'd done this thousands of times, over the years.

So much of our loved ones behaviour is due to the fact that they're frightened by the things that are happening to them, and blame us, their wives and carers, because they feel they have to blame someone. I found this so hurtful in the early days, but eventually I accepted it was the way this horrible illness affects people, and found that, to some extent anyway, I could switch off.

You'll find lots of helpful advice here on TP, and one of the best things is knowing that there are others who are in, or have been, in a similar position, and know exactly what you're going through.

 

[castalla]

Trixxie, I know our husbands were diagnosed at similar times, so I feel like you are part of my journey, there big hugs that things are getting worse for you guys

My husband's diagnosis has changed from early on set Alzheimer's to frontal temporal dementia, although they still say it is an uncertain diagnosis. However he also blames me for things, in particular his lack of understanding when I expain things. His FTD diagnosis is the semantic variant, so it language in particular he misunderstands. He verbally abuses me and calls me useless (in far stronger words than that), not what he would have done, always treated me as a lady. However then in more lucid moments or the next day he will say it is him that is useless and not me, so I think that maybe he transfers his frustration with himself and not understanding to me.

He also now hates what he has, when diagnosed he wasn't bothered, indeed he was pleased it was not cancer. Now he has realised that he is getting worse that he cannot do, the things he used to. He is depressed and frustrated by it. Therefore it seems to have taken longer to impact that him and for the realisation to take place.

Not sure if this is part of it. Is your husband on anti depressants, it might be worth thinking about. Message me of you want to chat off line xx

I'm slowly realising my dementia diagnosis wasn't a mistake, my symptoms are exactly the same as you describe, I asked my GP for help regarding my verbally abusive behaviour, she recommended marriage guidance, the GP left me feeling the marriage was to blame not the Dementia on my part or my wife not having a clue as to why I have changed.

 

[Grannie G]

Hello castalla

I'm slowly realising my dementia diagnosis wasn't a mistake, my symptoms are exactly the same as you describe, I asked my GP for help regarding my verbally abusive behaviour, she recommended marriage guidance, the GP left me feeling the marriage was to blame not the Dementia on my part or my wife not having a clue as to why I have changed.

The words marriage guidance in your post jumped off the page and hit me. They took me back to the years when I seriously thought our marriage was on the rocks because of the change in my husband`s behaviour and attitude towards me.

I don`t know what is worse, a broken marriage or a diagnosis of dementia.

Once I actually managed to seek medical advice for him, my husband was treated for depression for one year before actual diagnosis.

I hope you get the support you need here on Talking Point.

 

[Spamar]

Marion, I also wonder when OHs dementia started. One of the first things was that he would lose his way. But when he used to visit me, before we started going out, let alone married, he used to lose his way. That was 1981/2. Was that/could that be the first sign??

Saffie, OH also got to the stage where he couldn't wire a plug, though he didn't cry over it, to my knowledge. The time I really realised that there was a real problem was when he did a bit of hard landscaping and didn't allow for all the strains and stresses that would ensue. Even I realised that it wasn't right! He used to be extremely good at DIY, nothing under built!

Granny G, I've been through both and dementia is definitely worse imho! Or at least that's my experience, I guess not everybody's divorce was like mine, also no children involved.

 

[CBK]

Husband newly diagnosed early onset Alzheimer's

I'm so sorry to read of the problems so many of you carers are experiencing, especially when your husbands are so young. There's no definitive path that everyone follows, but blaming your loved one is a common theme. My caring years were educational, and I learned an awful lot along the way, but so much was trial and error.

But one of the most valuable lessons I learned, was that it was less distressing for both of us to just go with the flow. I knew it wasn't my fault that John couldn't remember where he'd put his keys/glasses/shoes etc, even though he accused me of deliberately hiding them, but I found it easier to apologise, and then try to look for the missing items.

My apology usually calmed things down, and I became quite an expert at looking in the least likely places for things. Keys were often found in the freezer, glasses with the bread, and shoes in the bin. One of the most distressing incidents for me, was when I heard him crying in the garage, because he'd forgotten how to wire a plug, even though he'd done this thousands of times, over the years.

So much of our loved ones behaviour is due to the fact that they're frightened by the things that are happening to them, and blame us, their wives and carers, because they feel they have to blame someone. I found this so hurtful in the early days, but eventually I accepted it was the way this horrible illness affects people, and found that, to some extent anyway, I could switch off.

You'll find lots of helpful advice here on TP, and one of the best things is knowing that there are others who are in, or have been, in a similar position, and know exactly what you're going through.

Hi I'm new on here have replied as not sure just how to post, wanted to say hello to everyone and to let you all know how helpful the posts have been from others with partners with early onset have been.

It has taken 2 years for the diagnosis, but looking back it maybe started 4-5 years ago, we have only been together 9 years and I feel shocked and stressed about what the future holds. I am having trouble getting him to talk about the future, would really like him to be involved with a care plan for the future and to consider trial medication, he seems in denial but at other times accepts his condition. He has definitely deteriorated in the last year and more things are starting to happen I am very worried jackie

 

[Scarlett123]

Hi I'm new on here have replied as not sure just how to post, wanted to say hello to everyone and to let you all know how helpful the posts have been from others with partners with early onset have been.

It has taken 2 years for the diagnosis, but looking back it maybe started 4-5 years ago, we have only been together 9 years and I feel shocked and stressed about what the future holds. I am having trouble getting him to talk about the future, would really like him to be involved with a care plan for the future and to consider trial medication, he seems in denial but at other times accepts his condition. He has definitely deteriorated in the last year and more things are starting to happen I am very worried jackie

Hi Jackie, and a warm welcome from me to Talking Point. If you look on the heading that contains this thread I have a partner with dementia, you'll see an icon on the right hand side +Post New Thread, and you just click on that and name your thread however you want to. You could put, for example New User needs advice, or whatever you like.

I can understand how worried you are, and I noticed you replied to my post, and I hope it helped you. If you have any questions at all, please post them, or send me a PM.