Struggling

[Jinx]

Oh Scarlett, it's so helpful to communicate with others in the same situation. Thank you for the chocolate cake - it was delicious! The thing I find difficult about incontinence is not showing any reaction to "accidents" other than love and understanding, which is hard when the bedding has just been changed! I've got used to cleaning him up now, which was easier once I'd geared myself up with all the necessary stuff to clean him carpets etc. etc. I'm sure you know the one! If I say I'm lucky in some respects it will sound strange but because my husband can't walk without help he can't wander. Falls are the thing I dread as it takes him ages to recover. He's also not able to use the cooker so that helps. It's very hard for us all, each at different stages, not knowing what's coming next. I'm better when the goal post moves now. The psychiatrist suggested a 24hr clock so he would know if it was morning or evening but he still gets me up in the night, having looked at the clock, to ask! Thank you for your support, everyone. Again, it's so nice to be in touch with those who truly understand, the way only a carer can, what it's like to live with this terrible disease.
Florence x

Florence I wondered whether a clock that says what time of day it is, e.g. 'Now it's Monday Morning' (you decide what time it changes from night to morning) might help as following link:
http://shop.alzheimers.org.uk/product/day-clock/. I haven't tried this type myself yet but I'm thinking about it. Has anyone else tried one?

I got my OH A Day Clock that says AM/PM next to the time, the day, month and date but he still doesn't really seem to understand it and gets up in the night.


Sent from my iPad using Talking Point

 

[Jinx]

Also found that having a sign by the clock has helped a bit


Sent from my iPhone using Talking Point

 

[Florence.]

Cwtch!!

Hi Sunny7 - that Cwtch made me feel very warm - I live in Wales!

It's each persons decision re. Anti depressants but I took them for six months when I was in a bad way coping wise. I thought it would be easy to stop them but it wasn't but I really wanted to feel how events were, not through a haze. I also found it hard to manage when I was on anti deps and short of sleep. Now I'm off them, I feel better in myself but they did get me through a difficult six months. My GP recommended counselling, which I found very helpful and he suggested meditation which I found excellent. For myself, I would rather go this route Than the anti dep one but each to his own.

Thank you for your advice. I am finding the TP very helpful this time after having a false start before. I was (am) desperate to share with people who understand and can help, what we are going through and I'm so grateful for such kind, understanding people to share with.

Keep on trucking!
Florence x

And my hand is reaching out to you too Florence. It is a terrible terrible disease and I hope and pray by the time I am my mother's age that they have either come up with a cure or legalised euthanasia because I never want my children to go through what I do. I have told them both I am not expecting either of them to look after me.. that I am willing to go into a care home and that they must not feel guilty about that. My mum said the same to me though years ago and now I feel as guilty as hell just thinking about it these last few days.

My GP has offered me anti depressants but I am a therapist and I don't want to go on them.. I use self hypnosis and meditate to keep as calm as I can but there are times when I feel so wound up I could scream and scream.. today I wanted to run away as far as my tank of petrol would take me! Other days she is okay and I feel more able to cope.

I feel so sad for you that this is your husband and all that you have shared together. Cwtch (Welsh hug) x

 

[LadyA]

Don't mind me - I'm not actually here, I went to bed, as I swore I would, over an hour ago!

I was just wondering - those struggling with the incontinence/laundry. Have you tried using washable bed protectors, but put lengthwise under the person rather than across the width of the bed? That's what I use with William, and it means that if he does "overflow", just the bedpad has to be whipped off and another one put on - much quicker and easier (and easier to wash) than changing the whole bed. This type of thing: http://www.completecareshop.co.uk/beds-and-bedding/kylie-bed-pads/kylie-bed-pad-single-bed/

 

[Izzy]

Don't mind me - I'm not actually here, I went to bed, as I swore I would, over an hour ago!

I was just wondering - those struggling with the incontinence/laundry. Have you tried using washable bed protectors, but put lengthwise under the person rather than across the width of the bed? That's what I use with William, and it means that if he does "overflow", just the bedpad has to be whipped off and another one put on - much quicker and easier (and easier to wash) than changing the whole bed. This type of thing: http://www.completecareshop.co.uk/beds-and-bedding/kylie-bed-pads/kylie-bed-pad-single-bed/

That's exactly now I use them on my husband's bed. They are good.

 

[Chuggalug]

Don't mind me - I'm not actually here, I went to bed, as I swore I would, over an hour ago!

I was just wondering - those struggling with the incontinence/laundry. Have you tried using washable bed protectors, but put lengthwise under the person rather than across the width of the bed? That's what I use with William, and it means that if he does "overflow", just the bedpad has to be whipped off and another one put on - much quicker and easier (and easier to wash) than changing the whole bed. This type of thing: http://www.completecareshop.co.uk/beds-and-bedding/kylie-bed-pads/kylie-bed-pad-single-bed/

What a stunning idea. Not at that stage yet, but good to prepare.

 

[LadyA]

What a stunning idea. Not at that stage yet, but good to prepare.

Oh yes - being prepared saves a lot of stress. You can also get Incontinence Wipes, which are much better for use on adults than baby wipes. And as my husband is resistant to personal care, and doesn't like being "touched", applying something like sudocreme would be impossible, I use Caldesene powder, and apply it with an angled powder brush - from the cosmetic's department. It's got a long enough handle that I can get it right into the folds of skin in the groin, and the brush is soft enough that it doesn't bother him. And the incontinence wipes have a moisture barrier in them, so they help prevent rash and sores too.

And don't forget washable chair pads for the armchairs and car seat!!