A right mixed bag

[Helen33]

I am experiencing a right mixed bag of emotions at the moment. Today Alan had the all clear from the hospital regarding his cataract surgery and they said it all looks absolutely wonderful. He is discharged.

Alan is having more and more periods of extreme agitation, anxiety and fear and I am finding these times extremely difficult to cope with. I feel like my nerves are on edge all the time and I cannot relax at all. Alan seems to understand less of what I say. Tonight I half watched a programme about two men and they were just having normal chit chat and a laugh. It made me feel so depressed because I have forgotten what it's like to have normal conversation of more than half a sentence. I don't even want to speak to anyone now!! It was only last week that I was saying that Alan is doing ok and talking quite clearly (meaning a full sentence - or enough for me to understand) and it is followed by this You all seem to be coping with so much more but I needed to speak this out to people who can listen.

Love

 

[living in hope]

Oh Helen
I am feeling exactly the same, things seem to be changing almost daily,my husband is now not sure of his way round the bungalow most of the time and can be a bit short with me if I cant understand what hes saying, but he uses the wrong words so I dont always know. what he means. I also feel unsure of what to do and certainly do not think I am coping well, I think you are doing a great job (I have read a lot of your posts particularly the ones supporting others) you are always there for others and others will be there for you.
Where would we be without TP
Love
Lorraine

 

[sad nell]

Helen love totally understand, never ever being able to totally relax is so exhauting, sorry the agression is developing more, no solutions from me, just take myself off and let Trev pace it out, not ideal but we need to survive this illness too, when Trev starts to have an haunted expression and breathing pattern changes i feel like running for the hills., but cannot leave him alone in the house , not even for 10 mins. have put a yale lock on a spare bedroom door and if i just need to escape i take my self off for half an hour making sure all exits are secure..How is the swimming doing, every thing seemed so positive a few weeks back, just reread your new coosie post. If you need a chat will be on here for bit unless summoned by Trev, can hear him pacing , moving all orniments,and panting loudly and rubbing legs, am keeping out of way for a while. hope tomorrow is better for you love Pam

 

[susiesue]

Hi Helen

I feel like my nerves are on edge all the time and I cannot relax at all. Alan seems to understand less of what I say.

I have forgotten what it's like to have normal conversation of more than half a sentence. I don't even want to speak to anyone now!!

If I didn't know better I could have written this myself -I cannot give you any advice as I don't know how to deal with it myself. My husband understands less and less of what I say to him and I find that after repeating something 7 or 8 times I just blow and tell him to forget it! - I know it's not the right way to deal with it but it is just so frustrating for us both. He then gets upset because I don't talk to him anymore.....

I also sympathise with you not wanting to speak to anyone - no-one seems to understand and I am fed up being given 'advice' on how I should be more patient - they have absolutely no idea what this awful illness is like not only for the patient and the carer too.....

Feel free to vent your frustration here!! - I will too.....

Love

 

[Grannie G]

I feel `lucky` if I can call it that, that Dhiren is not losing too much language. However, although I can understand what he says most of his talk is repetitive, unrealistic, illogical and I am expected to answer as if we were having an interesting conversation.

I have to confess, he thinks when I am at the computer I am doing paid work, and I let him think so. It`s the only way I can get some peace.

Helen, you can`t be perfect all the time. This illness really takes it out of you. I`m afraid the only way I cope is to switch off completely.

You are doing far better than you realize.

Love xx

 

[Helen33]

Hello again

Thank you Lorraine, Pam and Susiesue

It's amazing how helpful TP is. I already feel a bit calmer and better by reading your responses. It does make such a difference being able to say "it" to people to want to listen and want to understand.

Alan's son was here earlier (he's lovely) and I told him I was struggling tonight and even had a very small cry. He gave me a hug and said "I have to go" I ended up saying to him "don't worry about me because you know that I am a coper and will probably be ok tomorrow". Why did I have to say that

Dear Pam, Alan isn't at all aggressive but it still gets my nerves on edge. I think I'm picking up how he must be feeling.after repeating something 7 or 8 times I just blow and tell him to forget it! - This is just how I've been these last couple of days. I hate it when I'm like this because I know it's wrong but it's always a sign to me that something has to change (meaning ME). There are times when I really don't think I can carry on like this. Then again I do keep carrying on.

Dear Lorraine, that was lovely of you to mention that you have read some of my posts. I've been rather quiet this last couple of weeks and I imagine "out of sight, out of mind". I am really feeling very unloved tonight - I get like this when I am at the end of my tether.

Please forgive me for being so self-centered tonight but like I said to Alan's son, I will be back to normal tomorrow or sometime soon.

Love

 

[Helen33]

Dear sylvia

I've just read your post and burst into tears. Do you really think I am doing ok? Alan has been like a second skin. If I go to the loo, he is there. If I go to the kitchen, he is there. Everywhere I turn, he is there. It is the most dreadful feeling. I keep telling myself that one day, when he is not there, I will be wishing for these times back (but I don't really believe it).

Anyway thank you for your encouragement

Love

 

[BeckyJan]

Hello Helen:

PLEASE do not feel unloved for we all love you here! Thanks for sharing your feelings with us - it helps most of us to know that we are not alone with our thoughts and non of us can be perfect ALL the time.

There's no harm in admitting you are having a 'non coping' day or even days. The weather and the illness are enough to drive us all to distraction.

I hope you do feel better tomorrow. Keep posting.

Love Jan

 

[Helen33]

Hello Jan

Thank you.Thanks for sharing your feelings with us I had to read this twice because I had the distinct impression that Alan's son had gone out thinking to himself "I wish she hadn't shared her feelings" and I hardly mentioned anything to him at all!! I feel braver and safer on TP to share my feelings - thank you all.

Love

 

[Helen33]

Hi Pam

I've just read your post again and realise that the haunted expression and breathing changes are what Alan is experiencing more and more. Also the pacing and huffing and puffing. Or he just stands in the hall - motionless - and this too gets my nerves on edge. I know it's because he's afraid but nothing I do seems to help.

thinking of you.

Love

 

[nellbelles]

Helen's'

Helen
Joined at the hip..I think that's the expression you (and me) are looking for.
As soon as I shut the loo door "Helen?
I think also with this weather we have 'cabin fever'
I miss my laughs with the girls in the supermarket.(while he gets shaved,) I've got about 15 minutes.
I'm petrified that they ever find out how desperate I am for someone (anyone) to talk to.
I know when Tom is getting agitated and my nerves go into overdrive, we have conversations, (which he immediately forgets) and he sometimes responds to me ribbing him (which he immediately forgets)
So although It doesn't help you, I feel better for a rant.
Helen

 

[Helen33]

Hi Helen

how desperate I am for someone (anyone) to talk to.

This is me but also I don't think I know how to talk any more. When I go swimming, I never talk to anyone. I just swim, get showered, changed and come home. Other women there are chatting away to each other. I have become so isolated. The only time I get to talk is at the carers group and I missed last months and won't be able to attend this months

It did help me to read your post

Love

 

[sad nell]

Helem that its the nail on th e head, it is the feeling that no matter what we do we cannot help our partners whilst they are in this mode it makes me feel so useless, trev standing at side of me now ,breathing in my ear , it sets every nerve on edge and does irritate me to death so you are not on your own feeling this way,i also say to myself when he is not panting in my ear any more i will wish he was, on a lighter note , today when i was dressed in smart clothe , ( a rare occasion) Trev decided to through apint glass of fresh orange all over me, the couple who where ther just looked on in disbelief and did not know how to react till i started laughing needed to change my undies as well as trousers( they where a touch tight so perhaps it was for the best, glad to hear that someone eles does not feel like a saint
s,leep well love pam by the way think you are a very lovable lady, so do not feel unloved

 

[nellbelles]

Try

Please Helen, when you go swimming again..
Promise me you will make eye-contact and nod to someone.
Then promise me the time after you will say hello to some-one. (or the waters cold) just something.
One step at a time can result in the outcome of a long journey
Don't lose your life like I've lost mine.
Sunshine.. love and hugs
Helen

 

[Grannie G]

Dear Helen.

The haunted expressions, the huffing and puffing, are they all the time or does Alan have episodes? Do they happen at the same times of the day?
I imagine the shadowing is pretty constant and that is hard.

Dhiren has gone to bed. I`m so pleased to have some peace. I hope you get some peace Helen.

It sounds as if Alan`s son really couldn`t handle the emotion and upset.

 

[Helen33]

Hi Pam and Helen

Dear Pam, you may not feel like a saint but you certainly are one to your Trev. I think it's amazing that you managed to laugh when Trev threw that glass of orange juice over you - I hope I react like that should something similar happen It would have been much easier if you'd been in your tankini

Dear Helen, I do make eye contact sometimes and sometimes just say "hello" but I am so aware that I have nothing to offer in terms of friendship to anyone. I have no spare time. I have little left to give.

Don't lose your life like I've lost mine.

This really touched me Helen and I could feel the pain of it.

Love

 

[Grannie G]

Dear Helen

I have no spare time. I have little left to give.

That`s the trouble.
We can only make friends with those in similar situations. People who won`t be offended if you cut short a phone call. People who won`t think us odd if we cannot make arrangements to meet. People who have little to talk about other than dementia.
Thjat`s why we all get on so well on TP.

 

[Helen33]

Hi Sylvia

The haunted expressions, the huffing and puffing, are they all the time or does Alan have episodes? Do they happen at the same times of the day?

I'm not sure Sylvia. The haunted expressions have been day and night since the weekend as well as a change in breathing to deep sighs or huffing and puffing.

As for Alan's son, I hardly showed any upset and certainly hardly said anything. I could understand it if I spilled my guts out or even shared things that I do on TP But I know you are right. One of my brothers is the same. The slightest sign of "feelings" and he doesn't want to know!

I am so glad that Dhiren has gone to bed and that you have some peace and rest This seems to be a direct result of the medication that it stops Dhiren going into a constant downward spiral. However, it doesn't stop your feelings of dread when Sundowning starts

I am off to bed now in the hope of some rest - tomorrow is another day and I intend to start afresh tomorrow - I'll pick myself up, dust myself down and start all over again

Love

 

[susiesue]

Hi Helen

I hate it when I'm like this because I know it's wrong but it's always a sign to me that something has to change (meaning ME). There are times when I really don't think I can carry on like this. Then again I do keep carrying on.

I think we all feel the same - That is what is so wonderful about TP - we can show our feelings on here and know that we are not freaks! We are just normal people trying very hard to cope with this dreadful illness in the best way we can. I know I am not a saint - far from it! - but this has pushed me to my limits and I often feel the same way as you.

It's hard to talk to other people who are not in the same situation, however much they say 'you can always call me if you want to talk'. Yes, I can always call them and they will be sympathetic,but they have absolutely no idea how stressful this disease is for the carer, let alone the patient!

Anyway, don't feel bad and don't beat yourself up about it - I am sure you are doing a wonderful job - even if you don't think so!
lots of love

 

[Skye]

Dear Helen

Just read through your thread -- sorry, went to bed early last night, feeling pretty low myself.

I'm amazed how many people are experiencing language difficulties -- for a long time I was virtually the only person on the forum experiencing those symptoms.

Believe me, I do understand the frustration, I was almost out of my mind until I got help.

Helen, do you still get Crossroads every day? What do you do with your free time? I hope you're not using it all for work, because that is not relaxation for you, even though you do enjoy it.

I too found it difficult to talk to people outside the dementia sphere -- it's as if our minds are on a single track that is going round in ever decreasing circles.

My solution was to join U3A, and join classes that were discussion based. That meant that if I wanted to join in, I had to divert from the dementia track, even between classes so that I had something to contribute.

http://www.u3a.org.uk/

I know it's not for everyone, but I found that normal chit-chat just didn't work as a diversion. I needed a change of focus.

I hope you're feeling a bit better today, but do think of something you can do that will give you an interest and change of focus.

Love,