I'm so ashamed.

[Francy]

Francy I'm glad you had a good quiet Christmas. But I can see by today's post that you are still feeling guilty about your outburst the other day. Don't be, as others have said we all do it. You need to forget it now. The one thing about dementia is that the patient will forget it happened. My favourite place in the house is the bathroom, because I can go in and shut the door and have a good cry.

Hello Jenniferjean, I am trying to put my behaviour behind me, it scared me so much that I lost control, but it happened and I know I will not be the same as it just broke me. I feel broken but must move on and face what's in front. Over the years I have faced many tragedies and learned to be strong for others needed me and kept my emotions in check, I fear they are catching up now. In the quiet of the morning I weep, the tears just come from nowhere, not for long, but I think of it as a safety valve and hope it helps. I luckily don't need to lock myself away as JH doesn't get up till noon and I'm awake from the wee small hours. Are you like me and miss someone to just hug you and tell you it'll all be OK? It probably will be all OK one day but no good comes from it. What a destructive illness this is.
I hope we are all survivors, we've come this far. May the new year ahead bring us all some peace and happiness.
XXXX Francy

 

[Francy]

Thank you Alison, I agree with all you say. Sadly I am ashamed of myself and my actions, but realise I am not super human, that I had indeed reached my breaking point,just didn't know I had one. Next problem is how to stop it happening again and this is where I know I need help and will speak to my lovely doctor . For now I am learning to say nothing or very little when it starts up, I won't be drawn in to discussions or arguments.
I am so glad to have found Talking Point for the help and support you and others have given and continue to give me.
XXXX Francy

 

[Grahamstown]

Thank you Alison, I agree with all you say. Sadly I am ashamed of myself and my actions, but realise I am not super human, that I had indeed reached my breaking point,just didn't know I had one. Next problem is how to stop it happening again and this is where I know I need help and will speak to my lovely doctor . For now I am learning to say nothing or very little when it starts up, I won't be drawn in to discussions or arguments.
I am so glad to have found Talking Point for the help and support you and others have given and continue to give me.
XXXX Francy

I have found that saying very little is the answer to boiling over. I have stock yes, no and umm sounds which mean I am not ignoring him but it works well because he doesn’t remember anyway if I do try to give a rational reply. He seems to want me to have a ‘conversation’, because if I am listening to the radio he prattles away over it, just wanting an interaction. So it must be so frustrating for him and I try to strike a balance between keeping him happy and me calm. Take care and be assured that you are not alone in these overwhelming feelings.

 

[jenniferjean]

Are you like me and miss someone to just hug you and tell you it'll all be OK?
XXXX Francy

Hi Francy, I honestly think that is the hardest part. I feel I could cope with most of it if I still had him to prop me up. And if on the odd occasion I have wept on the wrong side of the bathroom door, he just ignores me.
I too have had tragedies to cope with in my lifetime, the hardest being almost three years ago when I lost my son to cancer. He would have helped me cope had he been here. My husband's condition had started prior to that, but fortunately for my son he only witnessed his dad's loss of memory side of things.
Unfortunately my husband insists on getting up when I do in the morning so it is 24/7, although he does mostly sleep through the night. But I do get some respite, I have a carer come in for 2 hours once a week and I am then able to get out on my own. Sometimes I just get on the bus and ride into town without going anywhere in particular. It's just being able to have that bit of freedom that I find does help. Once you get your husband diagnosed you will be able to find what benefits you can get.
I do hope your husband does willingly see the doctor after the festivities.

 

[Sad Staffs]

I am giving it till end of festive season, I am respecting his wishes, but I will wait no longer. My home is still peaceful but I feel a tension in it, mealtimes are horrendous as he's having major eating issues and I feel my anxiety levels rising when I cook or offer food, a lot of which ends is the bin.
On a brighter note, I managed to get out for a short walk on Friday and Saturday, it it was lovely. I live beside the sea and just stood and watched the waves break, the sea was calm and then there was a ripple and a wave would break, sort of reminded me of my life.
New year is an emotional time and one I don't relish, will I make a resolution, maybe, maybe I'll be kinder to myself.
I thank you again for your care and kindness and hope the new year holds hope and peace for you, your life is no easier than mine and you've probably suffered dementia longer.
XXXX Francy

Hi Francy
If your resolution is to be kinder to yourself, then that is a good one. One you should try to keep. You are important.
If walking by the sea watching the waves soothes and calms you, then please try to do that more for your own self preservation.
Life isn’t easy for us. If it was, then we wouldn’t need this forum.
I hope you manage to get the GP appointment very soon. If your husband won’t go, then you should go and tell the GP how it really is for you both. But as others have said, you can always go with your husband about some other issue, his eating perhaps. Once there you need to be honest, for your sake as much as your husbands.
Let me know how you are Francy, take care, with love, B xx

 

[Mudgee Joy]

I so totally agree with @Sad Staffs and @jenniferjean and @Grahamstown above - we are just more seasoned than you are Francy!!
I should not have any melt downs now - but still sometimes I do - we just had a 10 days at our holiday house in the mountains - every time my husband went down a flight of stairs he was lost !!! I got very exasperated and in the end did lose it !! My New Years resolution is to do my best ! It won't be perfect - but you have to just pick yourself up and be kind.

My husband has swallowing problems - I have tried many many things - milk shakes and ice cream usually go down - but with food it helps if it is crispy like a toasted sandwich - the doctor says his throat does not always 'recognise' the food and crisper food helps the muscles - with icecream I suspect it just slips down !!
He throws up a lot but we now just keep going - luckily his memory allows for that !! Love plus hugs MJ X

 

[Grahamstown]

In spite of what I said yesterday, I find that I am exasperated by his symptoms these days. He holds his hands out in front of him walking in a contorted way. He breathes as if it’s his last even though he doesn’t have to. He is still duplicitous about alcohol and with the relaxation of the Christmas season he has shown that. I did manage to avoid a total meltdown though so there is that that I have learned from TP @Francy . What really gets me is the ‘normal’ laced with the ‘abnormal’ and I have to keep pinching myself to distinguish between the two, made worse by host mode! I look at him and see this disturbed, anxious, puzzled look on his face as he aimlessly tries to function. I ask him to put his new warm jacket on when he brings his old thin jacket to wear, and he asks ‘why?’. He asks why to almost everything now just like a little boy, which he has become. He is not violent or angry so I don’t have that to contend with like so many people do but living with a pale imitation of my husband of nearly 54 years is pure Chinese torture. There are bright spots, our trip to see The Favourite yesterday was very successful, even though I had my doubts about the movie for him but really wanted to see it myself, and he was really engaged with the brilliant images, acting and the whole rip roaring story, laced with tragedy. We went in the morning when he is fresh, but when we got out he thought it was dinner time which threw me a bit. The evening was as usual, saying goodnight every half hour and going to bed, coming down and then saying goodnight... etc. I watched the Grizzly Bears and Me both parts on catchup TV, very touching, and then the fireworks in London, very spectacular, but he missed those because it was one of his upstairs moments and then came down for Edinburgh. I have got used to experiencing everything alone or with a partly there person so on I go. Do I feel guilty sharing this? A bit but otherwise I would crack too and that’s no use to anyone. So thanks to all my TP friends for just being there and hope we can get some good moments this New Year xx

 

[Mudgee Joy]

I am totally the same ! I avoid most meltdowns but can't totally - that thing of being there one moment and not the next - the spot in the brain that gives orientation - is totally missing in my husband - front is back - up is down - so crazy -
Hot and cold is also strange - he can change his clothes 3 and 4 times - will wrap up in 35 degree heat - then change down !! I am rather sick of it but must manage as you are really the only people I can complain to !!
But then a few hours will go by - with no drama - and I think what am I complaining about - it's just the crazy ness of being married to a "madman". Those faces are the mood changes I can go through in the space of an hour !!
Hugs and love to all you minders !

 

[Mudgee Joy]

And then I see him asleep and my heart goes out to him ! X

 

[Grahamstown]

Absolutely, he has just done exactly the same, cannot remember what he is supposed to be doing for a moment i.e. going for a walk so constant reminders and that we are going to lunch with some friends afterwards just doesn’t stick. I had thought he was ok today but then back to the strange conversations. It was this that made me login again and glad I did. Now for the social bit!
P.S. and he dozes all the time and I feel tears springing to my eyes, that happens more often now, except when I am exasperated!

 

[Francy]

Absolutely, he has just done exactly the same, cannot remember what he is supposed to be doing for a moment i.e. going for a walk so constant reminders and that we are going to lunch with some friends afterwards just doesn’t stick. I had thought he was ok today but then back to the strange conversations. It was this that made me login again and glad I did. Now for the social bit!
P.S. and he dozes all the time and I feel tears springing to my eyes, that happens more often now, except when I am exasperated!

 

[Francy]

I am thinking of tears now as a safety valve, never have I cried so much, especially first thing in the morning when I think of the day ahead and even I look in the mirror and wonder who is this wreck looking back at me. I am also realising there are some quite normal moments then as quick the madness returns. I think we are all constantly walking on eggshells. XXXX Francy

 

[Francy]

And then I see him asleep and my heart goes out to him ! X

When JH is asleep it's the only time we can both be at peace, how sad is that. XXXX Francy

 

[Mudgee Joy]

Hi all - a bit of a change of subject- but it’s all one - over the last 3 days my husband has had extra delirium - trouble Walking - and general loss of alertness - trip to doctor - then I realise he has gout in his big toe and thumb !! I have suspected gout in the past / more water no ice cream - no alcohol - and looking much better this morning !
Apparently gout gives you a 15-20%increased risk of dementia !!
Anyone else there recognising any of this !?! Mud- joy (not so joyful)

 

[Grahamstown]

I am sorry to hear about this latest development @Mudgee Joy I do hope you have got it under control now. Any little extra illness is magnified by the disease. I didn’t know about a link between gout and dementia.

 

[Mudgee Joy]

Hi Grahamstown - it's been a rough few days but getting back to balance !! And Perhaps it's more my opinion but my husband Norm's doctor is sceptical and ordered some blood and urine tests and an X-ray of the hand - but I am confident and hope to see results tomorrow . I asked a nurse who deals a lot with dementia and she just agreed - inflammation causes problems especially with vascular dementia. Norm had a similar problem 15 months ago - and then too the doctor was sceptical ! Best wishes to you and all readers !