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Two years to get this bad. What now?

Woo2

Registered User
Apr 30, 2019
2,653
South East
Agree with others , great to see your positive post @AL60 . Onwards and upwards . Noodle sounds a great tonic . A friend has a labradoodle called Noodle and he is a joy . Take care .
 

MAMMYGRANNY

Registered User
Jan 26, 2016
66
Al so glad that things are improving for you. You popped into my mind this morning when I was told to **** off while washing DH so I logged in here to see how you are. Great to hear of that little chink of light at the end of this (loooooong) tunnel!
 

AL60

Registered User
Oct 14, 2016
508
Cheshire
Hi again. I had intended to post roughly once a month from here on in but I feel that there are a couple of things worth sharing. Yesterday, Saturday, I reluctantly went to visit the care home. I say reluctantly only because it has such a negative affect on not only me but also my wife So much so it's been putting me off going . But yesterday, although there Was The odd bit of shouting there was also a lot of laughter, she actually seemed to be enjoying my company. I managed to stay for well over an hour which is extremely unusual, it was a pleasure to be there. I only left as her late afternoon meal was served as I preferred her to eat it rather than me wear it. I heard later that she'd got upset after I'd gone, she'd actually wanted me to stay! My, how things change. If this continues I'll increase my visits, have we finally turned a corner? Or is it the medication or is this just another stage in the dementia journey? Who knows, it just shows, never give up.
The other thing I want to share is this. I've received a letter from the clinic inviting me and several others to go in later this month and share my experience of being a carer. How well the clinic did, what it got right and what it got wrong, where improvements could be made etc, etc. Initially I just thought OK, things worked out in the end everything went fine and dandy, what's to be critical about. Then I thought, why not read back from 2016 and see what it was really like. It's a condition of the human brain that cuts out the bad memories and only keeps the good ones. That's why when we remember those days of never ending sunshine of our childhoods. I'd forgotten all about the stresses and heartache of those earlier days. The promise of the sitting service, the admiral nurse visits, the nurse visits and then after an age the carer visits which were often stressful in themselves. I had really forgotten how bad things were. So I'll take some notes and collect some dates and tell them exactly how it was in those dark days.
It's the first time I'd referred back to those times and even though I'd written those posts I still found them a fascinating read. I was almost detached from them as if I was reading someone else's life. Sometimes I laughed sometimes I could have cried but how I got through those times I'll never know. Enough for now. I just might go back to visit again tomorrow, See if I can have a repeat of Saturdays visit :)So I'll say goodnight 'til next time. Al60 ish :):)
 

Izzy

Volunteer Moderator
Aug 31, 2003
62,804
69
Dundee
it was a pleasure to be there.
What a relief for you @AL60. I'm glad it was a positive visit.

Having the opportunity to give feedback is good. I'm glad you have been able to use your forum posts to help you reflect on how things progressed. .
 

Casbow

Registered User
Sep 3, 2013
1,004
Colchester
Hi again. I had intended to post roughly once a month from here on in but I feel that there are a couple of things worth sharing. Yesterday, Saturday, I reluctantly went to visit the care home. I say reluctantly only because it has such a negative affect on not only me but also my wife So much so it's been putting me off going . But yesterday, although there Was The odd bit of shouting there was also a lot of laughter, she actually seemed to be enjoying my company. I managed to stay for well over an hour which is extremely unusual, it was a pleasure to be there. I only left as her late afternoon meal was served as I preferred her to eat it rather than me wear it. I heard later that she'd got upset after I'd gone, she'd actually wanted me to stay! My, how things change. If this continues I'll increase my visits, have we finally turned a corner? Or is it the medication or is this just another stage in the dementia journey? Who knows, it just shows, never give up.
The other thing I want to share is this. I've received a letter from the clinic inviting me and several others to go in later this month and share my experience of being a carer. How well the clinic did, what it got right and what it got wrong, where improvements could be made etc, etc. Initially I just thought OK, things worked out in the end everything went fine and dandy, what's to be critical about. Then I thought, why not read back from 2016 and see what it was really like. It's a condition of the human brain that cuts out the bad memories and only keeps the good ones. That's why when we remember those days of never ending sunshine of our childhoods. I'd forgotten all about the stresses and heartache of those earlier days. The promise of the sitting service, the admiral nurse visits, the nurse visits and then after an age the carer visits which were often stressful in themselves. I had really forgotten how bad things were. So I'll take some notes and collect some dates and tell them exactly how it was in those dark days.
It's the first time I'd referred back to those times and even though I'd written those posts I still found them a fascinating read. I was almost detached from them as if I was reading someone else's life. Sometimes I laughed sometimes I could have cried but how I got through those times I'll never know. Enough for now. I just might go back to visit again tomorrow, See if I can have a repeat of Saturdays visit :)So I'll say goodnight 'til next time. Al60 ish :):)
So pleased that your wife is being more welcoming to your visits. It must make you feel better On the subject of looking back at your "journey". I did that after my husband died. I knew times had been difficult but when I read all the letters I wrote on here, I made myself cry all over again. How I managed I don 't know. But it was what it was, and I am pleased that I did the best I could in every situation. It was the system that let us down sometimes. Good luck Al. Hope things continue to be better.x
 

AL60

Registered User
Oct 14, 2016
508
Cheshire
Hi. This is my second attempt at a post over the last couple of days. The last one was deleted barely into the first sentence. Not because of upset or depression or any negative reason but purely because it was so similar to my last post. Why then am I here tonight then? I said I'd keep you updated and that's exactly what I'm doing. Last Thursday I was at the clinic giving them feedback regarding my wifes treatment and also my own experiences as a carer. It wasn't easy. I'd taken notes of events and dates, most of which were recorded here. But I wasn't prepared for the emotions that came pouring back as I listened to the experiences of some of the others in the room. It was becoming apparent that although I felt I'd had a hard time, others in the room were having it far harder. One lady in particular, the same age as myself is looking after her mother who is well down the road on her dementia journey. As if that wasn't bad enough her husband is also suffering from the effects of early onset dementia! How on earth do people manage to carry on. I thought I'd had it bad but stories like this really do bring it home that no matter how bad things are, there's always someone always worse off. I came away from that meeting with some very mixed emotions. Feeling so much better about myself and at the same time feeling absolutely helpless about the predicament of some of the others.
Enough of that for now. On a more positive note, my last few visits to visit my wife have gone extremely well. The last few visits she's been in such a good mood, all she does is laugh! I do have a secret weapon though, a new puppy called Marley :). My daughter recently acquired a puppy called noodle, it was against my better judgement but I have to admit I've fallen in love o_O so much so that in anticipation of my daughter leaving home and taking noodle with her, i decided to bravely reach out and get a puppy of my own, a black and white cockapoo I've called Marley. So now when I go to visit I take them both with me, what a difference it makes:). Well that's it for now, it's time to sleep, it'll be morning all too soon and I have two puppies to walk:)so goodnight from Al.o_O
 

AliceA

Registered User
May 27, 2016
2,854
Lovely to hear. Al, it is so good to hear that you are doing well and things are smoother.
 

Amethyst59

Registered User
Jul 3, 2017
5,749
Kent
Hello, Al! I got a puppy too, last year and she has been a life saver. On the subject of support...I had a phone call last week from a local volunteer charity. I had been signed up with them when Martin was first diagnosed and now I have reached the top of the list! Would I like three hours a week respite? Martin has been in care now, getting on for two years.
I’m so glad your visits are getting better, that and Marley, should be putting a smile on your face.
 

Woo2

Registered User
Apr 30, 2019
2,653
South East
So good to hear from you @AL60 and that things are more settled , Long May it continue .I’m sure Marley will keep you busy and entertained . They are such a joy .
Take care .
 

Sarasa

Registered User
Apr 13, 2018
1,696
@AL60 great to hear such a positive post. It seems the dogs have been the missing bit of the puzzle to make both your wife and you happy. I guess it's got the added bonus of making you fit, and maybe making some new friends too.
 

Guzelle

Registered User
Aug 27, 2016
421
Sheffield
Glad things are better for you. Dogs are a good faithful companion. Who would have thought that’s what it would take to help your wife accept you visiting her!
 

jenniferjean

Registered User
Apr 2, 2016
760
Basingstoke, Hampshire
How on earth do people manage to carry on. I thought I'd had it bad but stories like this really do bring it home that no matter how bad things are, there's always someone always worse off. I came away from that meeting with some very mixed emotions. Feeling so much better about myself and at the same time feeling absolutely helpless about the predicament of some of the others.
You did manage to carry on Al, and now like you said in your earlier post - there's light at the end of the tunnel. It doesn't matter how much worse some people have it, it's a fact that it's hard on all of us. But it's posts like you are posting now that can help us all hope for that light at the end of the tunnel.