Silently screaming

[LynneMcV]

It's silly I know - but I have been feeling a bit out of place lately.

I am really grateful that my husband has access to a group that caters for younger people with dementia - and that he thoroughly enjoys it.

The group is run on alternate weeks - with the week it's not running being used for carers and people with dementia of all ages and stages.

They are lovely. I don't go every session because I work - but I try to get along occasionally.

As lovely as they are, I can't get past this sad feeling deep within me that asks "how have we have come to this?"

More and more these days my mind goes back a few years (and it is just a few years) when everything was so different. I think of the vibrant man that was my husband, the fun-loving father to my children - I picture him setting off to work, organising travel without a care in the world, making financial decisions, being the person so many of his friends could rely on and turn to for advice or a chat.

Then we walk into these meetings and I see my husband whisked away to play supervised games and I sit with the carers. I am told to share my experiences with other carers - but I have nothing much to offer. The people I am with are in their 70s or older, and although we can link on a common theme of having a spouse with dementia, our experiences are so different in many respects.

I am 53 - the people at these get-togethers who are my age are the children of parents who have been diagnosed with dementia. I can chat with them but feel I have nothing that will help them as I am experiencing dementia as a spouse.

When I chat to other spouses, I enjoy their company - but feel like I am skirting around issues all the time. I have to work full time so can't get to the various 'help groups' set up on weekdays. My worries are around paying the mortgage, helping our son through university. The help and benefits they are entitled to are not things I am entitled to a this time.

Mostly I am fine, I enjoy the sessions just for the company and a laugh - but there is always this internal scream I seem to be supressing.

Sorry to rattle on. I am just a little down today. I am just back from the library with my husband to get him registered as he has now decided to stop buying books and just borrow them (thank goodness).

Signing up should be a simple enough process but I found myself answering questions for my husband such as his date of birth, address, postcode - and when the librarian looked at me a bit oddly because I kept speaking up instead of my husband (who shows no physical signs of anything being wrong but was quite happy to declare himself 10 years younger than he actually is ) - I again found myself having to explain in a hushed voice (so as not to advertise it to the whole library) what my husband's situation was.

Don't get me wrong, she hadn't asked for the information - I just felt that in order to save my husband any struggle or discomfort, I needed to make his position clear.

Granted, the lady was very understanding and helpful, but it just seemed to tighten another knot in my stomach over what this disease is doing to my lovely man.

It probably didn't help that we went from the library to a nearby pop-in-parlour for the first time. I wanted to make sure my husband knows where it is so that he has a place to go for a chat during the week, should ever he feel the need to get out and about while I am working. I think it is something he would enjoy once the colder weather arrives and the daylight hours are shorter.

It is a lovely place and the people seem nice enough - but again, it was the glances from folk looking but trying not to be seen to be looking that made me feel awkward. We had a cup of tea and a chat - but in the quiet spells I just found myself looking around and thinking that visiting a pop-in-parlour had never been on my radar of things to achieve at this stage of my life.

I know, I know, I am being selfish. It's all about me. I know I need to 'get over myself' - the only thing that matters in all of this is my husband and his happiness, and he is happy.

I think that I am just extra sensitive today because it is my son's birthday - and in two days time it will be my daughter's birthday - and I just can't help thinking about how things used to be not so very long ago.

I just hope that in time this knot in my stomach, this 'silent scream' within, will diminish and the more normal rational me will re-emerge.

 

[jeany123]

Lynne I know what you mean,

I don't go to sessions my husband goes to a day centre 3 times a week, he can't go anywhere himself, a few years ago I could never have imagined I would be in this position either, not being able to do just what we want when we want or whispering he has dementia to strangers, what a awful illness this is and people so young are affected, it is a different sort of life to what we expected when we got married, I have the knot and the silent scream as well but we just have to carry on and do our best,,

Happy birthday to your son and daughter,

Best wishes Jeany x

 

[Sammyjo1]

I don't think you're being selfish at all. It's great that you are able to express how you are feeling and, from what you've said, you're feelings seem perfectly understandable to me.

I'm at the beginning of this long journey so I don't have much experience of it but i know it will help me later on to have read what you've said so I won't feel so alone when I have similar thoughts.

I'm thinking of making a small pin-cushion or something similar which I'm going to call "Demmie" (short for "dementia") and when I get angry about the situation we are in, I will stick pins in Demmie and hopefully will feel a bit better

Hope you feel stronger soon.

 

[Pickles53]

Lynne McV you are not being selfish. It is your life too and your husband would want you to look after yourself as much as you want to look after him.

 

[sah]

I could have written most of your post-although my husband refuses to go to any centres or clubs. Yesterday was our wedding anniversary ( 8th). He was diagnosed with AD nearly 6 years ago-so we had no 'real' marriage. However, he is still the love of my life. I told him we were going to walk to our local and he could buy me a meal; he had no idea why. Couldn't remember where we were married/who was there etc or any of the trips/holidays we had. When I asked him who had given me away - he named my ex husband! Now-he may have wanted to-but that's highly unlikely!

I too explain his illness to others as I don't want him to look stupid and want to preserve some dignity for him. My local shopkeepers know the situation - but others have me down as a very bossy wife as I tend to drag him away before he latches on to people- thinks everyone will be delighted to hear his life story!

But it's sad-and, as my CPN said to me, it's not the life we signed up for. I keep being told I must look to the future and build a life for myself - but that's not why I married him. I had a day off today and thought it would be a good day to read/potter in the garden and relax but it's been a very long day with no conversation - OH just sits indoors and stares at the wall. I try to stay positive-but not always easy.I also still work full time and know I have to continue with that-at least 8 years before I could even consider retirement. Hate this disease.

 

[Jinx]

Hi Lynne McV, although my husband is approaching 82, I am 63, and our situation is very different to yours, your husband being so much younger, I still completely understand what you are feeling. I have been lucky that it has only been in the past couple of years that OH has gone downhill both mentally and physically but I so miss the articulate, witty man I married. I too work full time to pay the mortgage and for care as he can't be left on his own now. I'm so sorry you and your family are being affected by dementia and sorry I can't offer more than a virtual hug. Please don't think you're being selfish, you aren't and everyone on TP will empathise with your feelings.


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[Mufti]

Hi Lynne I understand your silent scream! It's done with a smile on the face in my case. Like you my partner of 42 years now has to have me answer the questions and explain his behaviour. It breaks my heart every time. He is 73 and I'm 64. I had to finally put him into respite last year when my brother died very suddenly. It was the worst time in all sorts of ways! He has been twice since then but it doesn't get easier for me. I see this once articulate, funny man playing games and being led through his days. He attends day care at an alzheimers group once or twice a week when I and he can manage it - they are brilliant and often he seems more at ease there than at home! That still hurts - he hasn't known who I am for about two years now - knows I'm a nice person - but he has no sense of self or ownership of his life now. I still hope I will wake from this "nightmare" and find all is ok. It's as lonely place to be as the sole carer. I miss the conversation - simple day to day stuff that others take for granted. I am slowly realising I can't continue much longer and may have to look at permanent care -ouch! Seven years has taken its toll on me physically and mentally. I'm sorry this may all seem negative but your post was so honest I f feel I can be too. Hope you find some peace. X mufti

 

[Annie_M]

LynnMcV, I'm 53 too, in the same position as you. My husband of 28 years was a teacher, articulate, intelligent, fit and fun. We planned for our retirement, travel to the British Lions tours, cruises, enjoying our time together when my shift work stopped. Alas, the stroke put all that to a halt, and vascular dementia has left me bereft. i feel i'm a widow in waiting- so yes, have that silent scream, we all do. I have no-one to compare myself to in my local support groups. The stroke club is marvellous but cannot deal with the dementia, the Alz group is like yours, geared to older people and I talk to the 'children' my age.
We should exchange info, probably drive each other nuts with our similarities but at least we understand- as do all on TP I'm glad to say xxx

 

[geo]

Hey all you guys.. You have no idea how your struggles are helping me with my struggles. I am so glad I found this site it helps me stay sane somehow.. Love 2 all of you x Geo girl

 

[LynneMcV]

Thanks everyone for your replies - I feel quite overwhelmed by all your words. support and good wishes - especially when you are facing your own difficulties, many of which are above and beyond anything I have faced yet.

I am feeling much less negative today - and it is down to all of you, so thank you for taking time to share your experiences and thoughts.

I particularly liked the idea of the Demmie pin cushion from Sammyjo1 :-D

I am glad to know that by being honest about my feelings I have also helped others to feel more comfortable with what they are feeling too.

I try to be positive for the most part, so it was a difficult post to make. I have to admit that I dithered about pressing the submit button

When I did press it I felt a mixed sense of relief and worry - and even had tears in my eyes and wondered if I'd done the right thing, almost a sense of betraying my husband. Then, when I started to read your replies I felt so much better about things and glad that I had been honest.

As strong as we may be, we all have a chink in our armour and sometimes we just have to acknowledge that.

There is a time to support and there is a time to be supported - and that is what is so fantastic about this forum and the people who use it

And yes Annie_M - please feel free to message me anytime - in fact, anyone, please feel free to message me - I am more than happy to share my experiences and thoughts - whether here on the open forum or in private, whatever is most comfortable for you.

Thanks again everyone x

 

[nita]

Hallo, Lynne - I thought your post was very touching and it described very well what carers of AD sufferers all go through.

I am not in the same situation as it is my elderly mother I care for and realise it must be so much worse to see the effects of the disease in a much younger person and that person your partner.

And it must be especially hard to accept with the person who shared your life and with whom you had children. Your children are not fully grown up and you have a lot of responsibility to shoulder on your own which you expected to share. It seems life throws things at us unexpectedly which alter everything.

I think what happens is that we are forced to adapt to the changing abilities and behaviour of the person we care for, to make things as good for them as they can be and just to get by. Then sometimes it brings you up with a jolt when you suddenly become aware of what they have lost - their personality, the person they were before - and it hits you hard. We spend all our energy in coping strategies to help the ill person in their new, debilitated state and that is something we have to do constantly so that it becomes your life and a purpose in itself. I think somehow your brain gets rewired in new ways to deal with things! But underneath is a terrible sadness for what they and we have lost.

I am glad you are able to join in with your husband's groups which must help him greatly. I read your post on the thread about photos triggering memories and it is good you are thinking of those ways of reaching him. It is fortunate if they don't realise what is happening to them, though, of course, we do and we have to shoulder it alone where once we could have shared everything with the person.

I feel that sense of betrayal too in writing about my mother. I know she faced very challenging situations in her life that she kept to herself and didn't even talk to anyone about but then she came from a tougher generation!

Keep strong and keep battling away! It's good you have work to take your mind off the situation for some of the time. I hope you can find some other younger people in the same situation, perhaps there are places in other parts of London? In our area we have a centre dedicated to people with young onset dementia.

 

[DeborahBlythe]

Hello Lynne, there is so much in your original post that is vividly described and I am sure others will empathise with you on many fronts. The part which struck me was your experience in your local library. I don't know if you know this but I work in a library (and one which is next door to a pop in parlour too!)

So I am going to apologise on behalf of that library service for any discomfort you felt. Even the nicest people (I'm talking about library staff here ) can misread things. I hope it won't deter you from going back to that library. I'd like to message you about this. x

 

[Maywalk]

My heartfelt compassion goes to you all because I can understand how everyone feels.
Maybe a cyber hug will help everyone know that they are not on their own and this is a lovely place to call in to unload any frustration and cares.
Yes I am a lot older than most of you BUT I too have had my share of looking after my parents and now its my hubby and I feel like screaming too at times. Its a natural re-action to all the built up frustration of not only caring for a loved one but seeing them change and into the bargain feeling completely helpless at times. This forum does help folks to let their hair down AND there is NO NEED to feel guilty because we all need a bit of ME time.
(((((((((((((( CYBER HUGS TO ALL )))))))))))))
God Bless.

 

[LynneMcV]

Thanks again everyone - your comments have all been very helpful and understanding. Feeling more like my normal self now

Hello Lynne, there is so much in your original post that is vividly described and I am sure others will empathise with you on many fronts. The part which struck me was your experience in your local library. I don't know if you know this but I work in a library (and one which is next door to a pop in parlour too!)

So I am going to apologise on behalf of that library service for any discomfort you felt. Even the nicest people (I'm talking about library staff here ) can misread things. I hope it won't deter you from going back to that library. I'd like to message you about this. x

Thanks Deborah - yes I'm more than happy for you to message me. Please don't think I was being critical of the library staff, there is nothing to apologise for. I was feeling overly sensitive that day. The librarian was very helpful and discreet once she realised the situation. I don't blame her for looking at me oddly before I'd explained things - I certainly felt I was coming across as bossy every time I stepped in and answered a question directed at my husband, so I can hardly blame her for looking somewhat confused/surprised. There was certainly no rudeness on her part

Actually as soon as the librarian understood what was happening, she was very helpful, and although she began directing her questions to me - she still included my husband in the conversation, which was lovely. We couldn't take the new library card away with us, as it had to be posted to us (my fault, I had only taken my husband's passport along as proof of ID but left behind correspondence to prove his address).

Despite this, my husband was allowed to take books out - but as the librarian did not know if she'd still be at the desk when he was ready to leave, she kindly left a message for her colleagues so that everything would go smoothly when he had chosen what he wanted - and yes, it did go very smoothly

It certainly hasn't put us off the library

 

[ShellW]

In the same boat !

LynnMcV, I'm 53 too, in the same position as you. My husband of 28 years was a teacher, articulate, intelligent, fit and fun. We planned for our retirement, travel to the British Lions tours, cruises, enjoying our time together when my shift work stopped. Alas, the stroke put all that to a halt, and vascular dementia has left me bereft. i feel i'm a widow in waiting- so yes, have that silent scream, we all do. I have no-one to compare myself to in my local support groups. The stroke club is marvellous but cannot deal with the dementia, the Alz group is like yours, geared to older people and I talk to the 'children' my age.
We should exchange info, probably drive each other nuts with our similarities but at least we understand- as do all on TP I'm glad to say xxx

Hi Lynn
I have just found this website and the blogs and I am reassured and amazed in equal measure at how many people are in the same situation as you and I. Like you my husband was a fit chap, fell runner etc, before a haemorrhagic stroke in 2005 left him in an electric wheelchair and in the last 18 months he has had the signs of dementia. We finally got the diagnosis of mixed dementia in May this year. I do exactly the same as you sometimes just stand and think how the heck did this happen to us? Everyday he is getting worse we have tried Aricept but that has caused him complete heart block, and less stability with his epilepsy.
However just reading everyone's messages and knowing that other people are living with this strange world of dementia is immensely reassuring, particularly in the middle of the night!
I think we just try and keep going, be thankful for the support that friends and family give. Interestingly it has been people I would have least expected to be there for us and some long term friends haven't been able to cope with Jon's decline and we don't see them now.
Thinking of everyone xx Shelly

 

[maryw]

I think I (we) may belong in this post too. I am not very good at writing it all down as it hurts to see it in black and white but I am silently screaming most of the time. I battle against it and put on a positive front but underneath I'm so sad and sometimes feel I'm living with a stranger these days. Gone are the warm, empathic hugs (an electric fence is almost around him), conversation is so limited now (mainly just his hobbies and interests) and the wonderful kindness he always showed is replaced with verbal aggression! It's exhausting! And few people outside realise, which makes it all feel so isolating.

Just to illustrate why I feel my post is relevant. Hubby was a marathon
Runner (about 8 marathons) and competitive cyclist (training almost every day). Medical background is persistent atrial fibrillation (after numerous cardioversions), pulmonary embolism, silent strokes and one major stroke after which small vessel disease was diagnosed. As you say life wasn't meant to turn out like this and sadly that is exactly how it is. You have to let go and go with what is, but it is not always easy is it?!

 

[ShellW]

I think I (we) may belong in this post too. I am not very good at writing it all down as it hurts to see it in black and white but I am silently screaming most of the time. I battle against it and put on a positive front but underneath I'm so sad and sometimes feel I'm living with a stranger these days. Gone are the warm, empathic hugs (an electric fence is almost around him), conversation is so limited now (mainly just his hobbies and interests) and the wonderful kindness he always showed is replaced with verbal aggression! It's exhausting! And few people outside realise, which makes it all feel so isolating.

Just to illustrate why I feel my post is relevant. Hubby was a marathon
Runner (about 8 marathons) and competitive cyclist (training almost every day). Medical background is persistent atrial fibrillation (after numerous cardioversions), pulmonary embolism, silent strokes and one major stroke after which small vessel disease was diagnosed. As you say life wasn't meant to turn out like this and sadly that is exactly how it is. You have to let go and go with what is, but it is not always easy is it?!

Yes it isn't easy . I also found it difficult to deal with Jon's frustration at his inability to exercise to the level he wanted to. Although he goes to the gym 2-4 times a week for a 'swim' and cycles in his recumbent bike at home it is never enough ! I suspect this is common in former athletes .

 

[Fhvn]

Big hugs to you Lynne and to everyone else.
My oh is older than me, but I too am trying to work full time and be a carer. He will not go to day centres and groups, wants my company only. I wonder what has happened to my life. I went to the funeral of a friend today and listened to all her accomplishments and interests and activities. I thought to myself, I haven't been able to do those things....and then of course felt really guilty for thinking it. It isn't my husbands fault he got AD, life is what it is and that's the way it goes. And who knows what will come out of it, maybe our contributions to this forum will help others or lead to some kind of breakthrough. We'll never really know. Though I would like to let you all know how much you have helped me!


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[chick1962]

Hi, I belong to your club too ! I am 51 and my Oh is 64 . He has AD and vascular dementia diagnosed 4 years ago. I also miss my husband very much , he was a police officer and my rock and soulmate . Every day a little more seems to vanish and the stranger starts turning up more and more TP helps tremendously even though I do more reading than participating ! Just want to send a hug to everyone x


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[pamann]

I would like to say a big thank for everyone who is supporting me with this constant day by day all the problems that we all share with our husbands and wives, mothers and fathers, TP is a wonderful forum ♥♥♥

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