Caring for partner with moderate dementia

[calista]

I am new here and caring for husband with Dementia...probably moderate but getting a bit worse.

Xmas was harder as out of routine...

So hope to share on this site

[OliveMyLove]

Hi Calista. My mum cared for my dad for 15 years before he passed away. His memory loss was caused by brain damage that occurred when he had a heart attack at 55. To everyone else, he was still my dad. My mum worked so hard to keep up appearances, to make it seem like he wasn't as bad as he was, mostly as she thought it would make him deteriorate faster / make him depressed; pride is such an important thing. Mum felt so isolated; I hope you can find a community here where you can be honest and which helps you feel supported.

[calista in reply to OliveMyLove]

Thank you for your reply Carolyn.

15 years is a long time.

And yes I have community support in that we live in a small -ish town where he is known so people look out for him for eg ..he cant remember where car is....etc. Plus I go to a support group once a month . Unlike your mum I dont hide the fact that he has memory loss...quite the opposite. Its easier that way.

Thanks again for reply. I appreciate it.

[foxglove]

I am in the same boat so my heartfelt sympathy, any change from routine unsettling still we've got through Xmas somehow so keep going, taking life as it comes, trying to enjoy good days and getting through bad. All my love x

[calista in reply to foxglove]

Hi foxglove

Thank you for your reply

I had read your post and also some older posts and saw where you had had Shingles . I hope that that is ok now . As a coincidence ,I had the same about 10 years ago and just today fear it has returned ! Hope I am wrong .

Good you got through Xmas as we did but am glad it is over as it was all too confusing for husband .

He was diagnosed with MCI seven years ago and of course it is progressing now , He is on Memantine . We are both 72 .

Physically he is well besides slight Prostate probs and is on Xatral for that . Also he sleeps like a log...hope that will last .

It is great to "meet " another in the same boat although I am afraid that I may not be of much help regarding giving any advice as I dont feel am a good carer ! I was not cut out for it but keep trying to do better !

It is all very frustrating and also lonely as I a sure that you can identify with that .

Hope to keep in touch and wishing you all the best .

[foxglove in reply to calista]

Hi calista

agree with all you've said,esp. as we have a lot in common, I very much hope shingles a false alarm, one of the worst experiences I have had. I have still discomfort and like you hope it's not returning! I have stopped Amitripyline now as really it's use was over.

My husband also has prostate probs. he is on tamsulosin (think that's the name which helps - and sleeps a lot, I envy that) Also has had 2 biopsies done - 1st inconclusive ...2nd showed no sign of cancer - which he was convinced he had - so he has to continue on med and has to have bloods etc. repeated next Dec....yes 2017 and we already have apps.!!!

I too feel I am not a "good" care although I worked 15 yrs. as carer in residential home for elderly, more or less all dementia of some sort , very different when it's one of your own ! Expect we both do better than we think and maybe give each other a virtual pat on back ...chin up and keep on trying. As well as frustration it's the slowness that bugs me. Patience is SO not my middle name

I am 77 and husband 79, just bit older than you , I should be very pleased to keep in touch, thank you. Good wishes and thoughts x

[calista in reply to foxglove]

HI Foxglove

Hope. You are having a good weekend.

At least a calm one.

What stage is your husband at? Is he still active and taking exercise and so on? And can you go out for a while without getting someone in to watch ..?

I suppose I am lucky in that I can go out....I play golf...and it will be ok....the most thing would be that the car would be misplaced in town but that is ok. It is always found. His driving is ok but sense of direction not.

I am to the gp tomorrow I hope as he needs to give a sample due to a few uti s lately,and will ask about Aricept which one consultant reccomended and another didnt...doctors differ etc! Gp isn't exactly too interested I'm afraid.....and I will see about Shingles....it is not too bad but still there.

I was in the caring profession as well but as you say it is different when it is your own....and is24/7

I am lucky too in that I have a son living a few minutes away ,but I dont like to call on him too often....not yet !

Do you have family nearby at all ...?

I do hope that you get out and about a bit and have something you enjoy doing....it helps.

Best wishes....Callista.

[foxglove in reply to calista]

Thanks, had a "reasonable " weekend, and I am still able to get out (deo gratias!) Husband doesn't go out much now apart from med. apps. and I accompany. If he wants just to go out I make some excuse to go with him - less worry for me He is on donepezil (another name for Aricept.) GP. says jury still out on that but memory clinic did tests and recommended it so G.P. more or less had to comply. He did say when Aricept worked it works well. I had mixed feelings but felt husband needed to try and it IS making a difference but don't know how long effect lasts. It's all a bit of a gamble but is giving him and me a breathing space... we've been fortunate

Glad you enjoy golf, with me it's swimming and body balance, and I meet with a few long suffering friends for coffee and a chat

Son and daughter both down south and lead busy life's, I keep them informed but really don't think I want to involve them at this stage - not that that means I am perfect...far from it!

Hope you had a good weekend also. From my experience if offered Aricept would give it a go, but of course everyone's different and you won't know till it is tried. Good luck with gp tomorrow, will think of you. love x

[foxglove in reply to calista]

Hi Callista

p.s. meant to say do let me know how you get on at docs. (if you want to)

Realised I was a bit unkind about our gp., after all he did refer husband to memory clinic and carried out checks and prescribing recommended. I'm sure he didn't HAVE to comply. It's me that's just cynical (what me?)

Enjoy the rest of Sunday and hope you have a good sleep with pleasant dreams

Love x

[calista]

Hi Foxglove.

Well went to doc yesterday. He thinks it's not shingles so that is good news tho symptoms were same.

He has agreed to put husband on Aricept . I have not started yet as need to check with pharmacist as he starting him om 10 mg but when I read the leaflet it says start on 5 for a month. He is already on 15mg of Memantine. Nothing is straightforward'!

How are things with you ? You say husband doesn't go out that much,so when you go out then you know he will stay put ? That is good. Here I would say that he is more active. He has gone to golf now so I have a short break before picking grandkid from school. I go to tai chi class on Tuesday mornings.....today was a muddle as I had to take his car ...my battery down...When I came back he was setting off to look for HIS ....car...my keys in his pocket....and was going to look for his previous car which we had changed nearly a year ago....what a muddle. ...Hard to follow but that's life in our house if there is the least change.

However great when he gets out....his friend makes sure of that and he is fine to drive to club and back ....it's not far.

So that is my rant for the day.

Hope you are having a good one...maybe swimming...it's important to have you time.

Talk soon.

[foxglove in reply to calista]

Good news about the shingles and about the Aricept. My husband was started on low dose, then increased. Sorry not to have replied sooner your reply did not appear in my daily posts but fortunately was having a look on the forum and there it was . Hope your husband manages to go on driving for a bit gives him independence.- even with the mix up! My husband was advised to stop and I'm glad he did so and surrendered licence of his own accord. You're so right about change being unsettling We are on the same path but different stages and we have to find what works best for us .

Would you mind if I contacted you by private message then more chance of receiving? If you don't want to we can continue as we are

I don't know husband will stay put when I go out but I have developed a sort of feel Not bad days recently, as usual live as it comes and yes important to get me time. Hope you OK. x

[calista]

Yes that would be good to direct mail

My address is [e-mail]

[foxglove in reply to calista]

Have noted email - thanks, but meantime will contact via the forum and PM, there's a reason.

[calista in reply to foxglove]

Hi.

Tried to mail you but it wouldnt deliver.

I dont know why.

Just see if you get this.

[foxglove in reply to calista]

Hi Yes got and your other emails , looks like you're back in business!

[foxglove in reply to calista]

p.s. that's if I can remember how to PM!

[calista in reply to foxglove]

Its the same as emailing .

[foxglove in reply to calista]

Hi, hope you get this, still not to sure what I'm doing! - not too computer savvy.

I had a nice relaxing swim this morning and am just about to go to health practice to collect repeat scripts, story of my life sometimes. One of the practice nurses said I spent more time in the surgery than she (cheeky miss,.... just seems like that)

Good on you for practising tai-chi, had a few goes at that but never quite got the hang of it. Body balance starts with a short tai-chi warm up and I can cope with that. Went to a really serious class once, mainly male students and it was the martial arts stuff, needless to say even though I was younger then didn't last long there Fantastic to watch the advanced group who used staffs and seemed intent on killing each other

Hope you and husband are having a pleasant day weather a lot better here (Wrexham) than of late. Whatever, take care and enjoy the rest of the day. Love xx

p. s. Has husband started on Aricept yet? If so hope it gets good results for him and you. x

Re-Posted this in usual place as I really want to keep in contact. Problems with email - computer engineer friend is sorting but has got to be in a way that thicko me understands.

[calista in reply to foxglove]

Hi Foxglove.

Sorry didn't get back sooner but yesterday was hectic as is today,,,,back from tai chi....getting husband out to golf...and now to pick grandchild from school...pick up and fill scrips...give her lunch...and so on !

But will write later this eve and catch up.

If you read forum there are a few more on that seem to be in our positions.....worth a read.

Til later....hope your day is going ok.

Best wishes.

Callista.

[calista in reply to calista]

Hi again.

Nice that you had good swim yesterday...it's relaxing til you have to face the music again!

How are things going now ?

I meant to say to you that about two years ago I attended a course run by the Alz assoc. here. I found it a great help ....there were about 18 of us all at different stages and got a lot of info etc. I still have notes and info in a folder. I don't know if they run courses inWrexham....(I will have to look up where that is). I live in the West of Ireland. And I know that I can call on them when I need to as well....so far muddling along though.

The tai chi I do is very gentle and all ladies of about my age which is great ....but yes it is a challenge to follow the moves.

Also play golf twice a week weather permitting and so far alright though last Sunday I think husband forgot to have lunch and I was gone all day....it seems every day it's a new problem....I don't know about you.

Did you read other posts today?...I can identify with some....the frustration and the guilt but thankfully husband is not aggressive ....hope it will stay like that.

I am not hugely computer savvy....I often need help from son. At the moment keyboard not working on iPad so typing awkward. Hope you get going soon on it...if you sent me you're email address I could reply....maybe that would work.

That is enough for now !

Best wishes.

Calista.

[Flopaterson]

Flo paterson hi like you I look after my husband who has alzheimers and dread any occasions eg christmas birthdays never know what he is going to be like when there is a family occasion as he always accuses some one after they have gone of saying something which is very upsetting for me so special occasions are becoming something I dread managed to get through this Christmas ok without any problems but I don't enjoy it cos I am on edge all the time his alzheimers seems to be a lot of paranoia which is more upsetting than the memory loss which I could cope with hope alls ok with you calista