joH's blog

[jhoward]

Thanks April - I'll get on to that.

I can see my son being very tempted to take over, not that he wants to really as he's pretty busy, but rather than deal with my indecision and forgetfulness. And of course,even being under a slight pressure makes me worse. It's a horrid stage (although so are they all, really, aren't they?)

 

[chick1962]

Hello JHoward only just have seen your blog it's good to see you posting and you give us a great insight as carers . Thank you Keep on blogging .


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[jhoward]

thanks chick1962. It does me good to write it.

 

[chick1962]

thanks chick1962. It does me good to write it.

Good morning, hope your day is as good as can be Any plans for today ?


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[jhoward]

You're an early bird, chick1962!

My plan is for an easy day, free of family dramas (which I only experience very much at second-hand but do rather go on). This morning I have a 17 yr old grandson fast asleep upstairs, with their little dog longing to go out. I'm not really mobile, (walk with crutches) so am reluctant to take him out myself. I've woken Bertie once and am relying on the dog to get him actually up!

I'm hoping for some rain for the garden, as I'm fed up with hobbling about with a watering can: it looks quite promising right now. If not, that same grandson will be handed the watering can!

 

[chick1962]

You're an early bird, chick1962!

My plan is for an easy day, free of family dramas (which I only experience very much at second-hand but do rather go on). This morning I have a 17 yr old grandson fast asleep upstairs, with their little dog longing to go out. I'm not really mobile, (walk with crutches) so am reluctant to take him out myself. I've woken Bertie once and am relying on the dog to get him actually up!

I'm hoping for some rain for the garden, as I'm fed up with hobbling about with a watering can: it looks quite promising right now. If not, that same grandson will be handed the watering can!

I have my 6 year old grandaughter here too no chance of her still being asleep . Indeed an early bird but not by choice as husband wakes up frequently during the night , gets a bit confused too . I am used to it though and we have plenty of good days still. I just use the hose on the garden wish we would get a bit of rain as we always miss it being in the south east corner of Kent . Hope you enjoy your day


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[jhoward]

A dozy day, rather worrying. I've managed to "live my life" - a friend picked me up to have lunch with her and her (grown) daughter, and we had good conversation: grandson Bertie was here (he's staying) and we've had good chats - have hung out washing, made my bed, all that. But I do feel weird and kind of out of touch: good habits keep me acting like I'm a normal person, but really I'm walking about in a kind of dippy cloud. I'll talk to the Alzheimers contact tomorrow and see if should take more meds, or see someone or just put up with it.

 

[chick1962]

A dozy day, rather worrying. I've managed to "live my life" - a friend picked me up to have lunch with her and her (grown) daughter, and we had good conversation: grandson Bertie was here (he's staying) and we've had good chats - have hung out washing, made my bed, all that. But I do feel weird and kind of out of touch: good habits keep me acting like I'm a normal person, but really I'm walking about in a kind of dippy cloud. I'll talk to the Alzheimers contact tomorrow and see if should take more meds, or see someone or just put up with it.

I think it's all about good days and not so good ones. My husband is the same and talks about his brain being full of fog and it's hard to keep up . He is on Rivastigmine as he could not take aricept due to clashing with other meds. Wishing you a good evening


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[jhoward]

Thanks chick. Fog is a good description - the other similarity is one of those half-asleep dreams. I'm totally fed up with it, I admit, and wish there were a cure. I dread the next stage of getting worse.

 

[chick1962]

Thanks chick. Fog is a good description - the other similarity is one of those half-asleep dreams. I'm totally fed up with it, I admit, and wish there were a cure. I dread the next stage of getting worse.

It can't be easy Jhoward but maybe enjoying the good days and concentrate on what one can do , rather what one can't is the better way forward. The here and now is what matters really. My John is into his fifth year and while there are a few things, he is quite stable and we enjoy life It nice to read your posts as it helps me to understand and be a better carer but I am fortunate to be able to still speak with my husband about how he is feeling . Best wishes to you chick


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[jhoward]

thanks again chick

Thanks again chick
It nice to read your posts as it helps me to understand and be a better carer
It's so great to feel as though I'm contributing something. I'm used to feeling "of use", a feeling that's it's hard to let go of...

 

[jhoward]

let myself down this morning

What a peculiar day! G'daughter Holly (23) asked if she c'd stay the night (probs with late trains and buses to her house etc)
I said sure, just sort yourself out. I like them being able to use the house like that. (Or I did)
I got up late the next morning, and found her gone, with the spare room in a state, (knickers all over the carpet, pile of clothes needing to be washed, bed not made) and had a real melt-down, phoned her and her dad and made a fuss. Her Mum (parents are separated) sent Bertie 17 to clear it up - BUT maybe it wasn't Holly but one of the other grandkids and I was just doing my dementia thing, which hasn't happened before. If it happens again I'll take a pic before melting down. I feel a real fool.

Daughter Sophie said "No need to feel a fool - whoever it was, the spare room was in a mess. That's not on," which cheered me up a bit.

But I see to be advancing to "dotty old lady" and leaving "Our lovely Gran" behind, more quickly than I'd like.

Has this kind of thing been happening to anyone here?

 

[Sue J]

Hi Jhoward

Has this kind of thing been happening to anyone here?

I have regular meltdowns when in a bad phase and am very much like a dotty old lady overhearing neighbours children referring to me as 'Grandma' - I am mid 50s I can't tolerate much that causes annoyance especially when I am bad so you're not alone but I agree with your daughter - whoever left your room like that shouldn't have - and that they'll no doubt learn and maybe Holly will tell the right one off if it wasn't her

I sympathise though as its not nice when you can no longer 'know' how you might react over something and if you're like me last thing you want to do is cause upset.

Best wishes to you
Sue

 

[jhoward]

Thanks Sue. Consoling.

It's getting clear to me (belatedly) that the Alzheimers is getting ahead of me, and my "natural intelligence" isn't going to be enough to keep me coping.
Do I need a carer? or are good friends and relations enough to keep me going?
As I've said before, I'm so darned independent that I don't take kindly to the idea of needing 'care'. And I'm too mean to want to pay someone to do it either, when I wanted what money I have to go to the kids.

I've got to the stage of completely forgetting my passwords etc, and can't even remember where I've written them down. I clearly need to talk to one of the dementia advisers and to make a sensible plan, as I may have already said (Taken recently to repeating myself, with what seem to me like really new and exciting ideas!)

Luckily my two grown kids are around a lot - I could get them to have a meeting with me, maybe with a very effective friend who's helped me with some of this.

I have to be resolute about counting my blessings, not sinking into a "Poor me" situation. So... Great kids and grandkids, enough money, nice little home, amazing friends, living in a good village, and even have a lovely little garden (which right now needs watering!)

"Pull yourself together, Jo! You've lived to 80 so count those blessings again!!"

 

[aprilbday]

80!!! That's a big blessing along with those wonderful comforts!
Good for you!!! So many not that fortunate. Enjoy it to the fullest! Every single minute. Happy for you

 

[LoisJean]

Me, too!

Hi, jhoward! I've been following you folks around like a puppy but now you have inspired me to get a few things jotted down here. I move in fits and spurts now. I determine to be one way and then before I know it, I'm just the opposite. I seem to be losing some of my precious control over processing and filtering.

I have been having reactions much like yours. I notice now an increase in my levels of intolerance. I seem to fly off the handle much quicker now and it's things that people do that are just plain rude. Not long ago I would have just let stuff like that go but now it seems that first I get really angry and then, more times than not, I say something quite nasty. I really want to punish people.

A few days ago I was waiting in line and the cashier was having a chit-chat with a customer and totally ignoring the people waiting in line. I became aware that I was getting anxious; then the nasty thoughts started forming in my head; then I began to get angry; pressure was forming behind my forehead--I was hoping my anger would kind of sink into her by 'osmosis'...but, no. I check my watch and it's 5 minutes she's been yapping with this person. So I pipe up and loudly say something like: "what's the matter with you?! Are you blind!! Quit your yapping and get busy!" I immediately felt better. The pressure in my head was gone. I could breathe. No one clapped. No one congratulated me on a job well done. But by goodness the line moved a whole lot quicker. And when it was my turn to check out, I didn't apologize for being so mouthy.

For the most part I am reacting much the way Sue J describes herself. It wouldn't be worth the mention except that this is not normal for me. It's small things that seem to balloon into very large disturbances in my brain very quickly--before I can catch them and I find my entire self becomes very uncomfortable and edgy. This change seems to have come about after a very long spell of what I can only describe as a 'mental absence' which was brought on by a deep emotional trauma. (Possibly another small brain stroke.) Today I find I am more 'disconnected' from my immediate world and it's people..even though I can still relate and respond with some clarity; I can still drive and zip up my pants-- But the changes are happening and they present me with quite an adventure in unknowns.

I'm so glad you posted your experiences, j.. I must try my best to stay tuned in to TP and add my 2 cents. It helps me so much to be an active part of our experience.

Peace and that in abundance to us all...LoisJean

 

[aprilbday]

Ha ha ha ha, L Jean!
If you ask me, she deserved that reprimand. Hard to tolerate these disengaged workers who are being paid to work not socialize!

 

[jhoward]

my worst day so far!

Today has been awful. I just want to cry all the time. And had a row with my son, who works here one or two days a week. So here's another moan.

Maybe I'm not well - problem is, I don't have the energy to make a doc's appt. I plan to ring a nearby friend and get her to book a doctor's visit at a time when she can come too.

I'm sure that people will assume that it's the dementia that led to the row with my son - maybe, but only because I'm much less tolerant of his attitude that I've been up until now. He's nice enough, works hard, has brought up 4 lovely kids, copes with an alcoholic wife... so who am I to expect more than his normal kindness. But he does still at age 50 assume that I'll let him have the car, lend him bits of money, and generally help to ease his life. Can't really blame hime as I've always done that!

I yearn for someone to be kind and tolerant and understanding, and to put *me* first (Hard when they all have taxing lives of their own)."Dream on..."

So instead I need to be resolute and practical and generally get a grip. And face up to the horrible condition, reminding myself that at least it's not physically painful or life-threatening.

I hope someone reads this and says at least "There there, Jo. So tough for you" Hey ho!

 

[sleepless]

Well it is tough for you! And from your post you are obviously used to dealing with stuff and getting on with it and helping everyone else......but you deserve a lot of consideration, so I for one will happily say "there there, Jo" and suggest you treat yourself to something nice, if it's only feet up with a hot cup of tea.
We all need that bit of appreciation every now and then, and I hope your son will think on and realise this.

 

[jhoward]

Thanks sleepless. Lovely post.

A friend took me to the garden centre today - we each have a tiny garden that we love.
She's brilliant with the Alz - an attitude of "just another bloody thing" while being really kind and considerate at the same time. We bought some nice plants, chatted a lot, had coffee and generally had a normal friendly morning.

Now I'm back, and realising that was just a lovely intermission - I still feel crazy and a bit desperate, in spite of being well aware of all my blessings.

Lovely grandson Bertie, 17, stayed over yesterday evening and went off to work/college (I forget which) this morning. We each seem to manage to link with the other one's conversation, and it's really pleasant.

So now I've had some lunch and am off for a late afternoon nap. Good wishes to all here.