I can't cope

patsy56

Registered User
Jan 14, 2015
837
0
Fife Scotland
I just want to hugg you all, this disease/illness takes people so many different ways. I am at the moment hiding in myself........(reason not been on here).....and doing courses.

I just want to run away at times too. Been "retired" now 3.5 months........retired, read full time carer for OH.
 

netsy22

Registered User
Oct 31, 2015
260
0
Switching off

Thank you for your messages-they are much appreciated. I wish I had someone close by who has the same problems has I have, then I could visit/escape for a while.
Near me there is quite a lot of support for carers, coffee mornings, drop in cafe, etc, where you can get advice or just chat. Ask Age concern or Alzheimer's society. I switch off every evening by doing a jigsaw puzzle for an hour or so.You have to concentrate on it! Also fresh air and a walk does you good. Hope the anti-depressants kick in soon don't give up them it takes a while.
 

netsy22

Registered User
Oct 31, 2015
260
0
Oh dear Lynne - I understand. I cry every day at how unjust and horrid my OH is.

Ive recently had a cancer operation and still on cancer drugs - scans etc. and I
wish I hadn=t survived to live the short time left like this.

Gooby
So sorry for you. It must be so hard to cope with. I don't know what to say except try to find relief in small things, a sunny morning, a funny TV prog, a magazine article a nice take away meal?
 

netsy22

Registered User
Oct 31, 2015
260
0
I so understand and sympathise. I don't know where we find the resilience to carry on. Some of the things that help for me are music, sleeping in a different room, having part time carers, trying to make sure I have one night a month away on my own. This has taken me years, literally, to put in place and it never stops. I Might just have found somewhere that will take him for respite occasionally (most care homes not licensed for somebody so young) so that I don't have to depend on ad hoc visits from distant and busy family. Then I have to cope with the guilt. But I have found that with all these that I can then concentrate on having 'quality' time more in the time we are together, which is still most of the time, and the depression is less.

If only the hugs did not have to be virtual xxxx

And I am sorry if my temper showed at the comparison with age-related dementia but it is so very different that comparison should never be made ever, however well-meaning. And of course it helps to have a safe place to say that here when if real life you have to be so damn polite with everybody all the time :)
You are right it is so very different and you are allowed to shoe your feelings! I care for my mum aged 87, who is coping quite well a the moment and I feel fed up at times, but it is so much worse for so many people.
 

patsy56

Registered User
Jan 14, 2015
837
0
Fife Scotland
Oh dear Lynne - I understand. I cry every day at how unjust and horrid my OH is.

Ive recently had a cancer operation and still on cancer drugs - scans etc. and I
wish I hadn=t survived to live the short time left like this.

Gooby

you take care of yourself, you are run down enough as it is. huggs.
 

Lynne68

Registered User
Mar 3, 2016
28
0
Hi Lynne68
if it would help to actually speak to someone try the helpline
You can contact the helpline by calling 0300 222 1122 or by email at helpline@alzheimers.org.uk.
It's open 10-4 at weekends
here's a link
https://www.alzheimers.org.uk/site/scripts/documents.php?categoryID=200365&_ga=1.118947401.1118739318.1457726994

maybe tomorrow contact your local Adult Services to tell them you are close to breakdown and need some respite?
have you chatted over with your GP about how you are feeling?
sorry if you've already done these

best wishes
Thank you for all your support-it does to knowat I'm not the only one suffering. I have spoken to the helpline. I am going away for a few days with some friends for some respite, hopefully this will help me.
 

Slugsta

Registered User
Aug 25, 2015
2,758
0
South coast of England
I'm so glad that you have some respite in view Lynne. I'm sorry that you, and others, are feeling so desperate. I'm sorry that you are dealing with this with so little help.

(((hugs))) to Lynne, Aisling, Sarahdun and everyone who is struggling to care for a loved one with this awful disease.
 

Pollyanna153

Registered User
Jul 15, 2015
41
0
I can't cope with this much longer! The thought this could be my life forever gets me in a panic? I'm always crying because of whats going on!

Lynne
I know where you coming from.
I have never cried so much in my life my husband has dementia
Feeling like no light at the end of the tunnel
I have rang my sister in the middle of the night just to have a voice and I was just sobbing my heart out
I have got one chink of light I have got him into a day centre one day a week and that one day in my own was fantastic very hard to explain to anyone not having the 24/7 responsibility
I was getting that I resented being with him
The day after the day centre I actually took him out for the day as I felt so much better
Am hoping to get two days
Looking forward to my second day this week
Is it possible for you to get any of this kind of help
Keep chatting on here as we all in the same boat and impossible to explain our feelings to anybody not experiencing it
 

Lynne68

Registered User
Mar 3, 2016
28
0
Lynne
I know where you coming from.
I have never cried so much in my life my husband has dementia
Feeling like no light at the end of the tunnel
I have rang my sister in the middle of the night just to have a voice and I was just sobbing my heart out
I have got one chink of light I have got him into a day centre one day a week and that one day in my own was fantastic very hard to explain to anyone not having the 24/7 responsibility
I was getting that I resented being with him
The day after the day centre I actually took him out for the day as I felt so much better
Am hoping to get two days
Looking forward to my second day this week
Is it possible for you to get any of this kind of help
Keep chatting on here as we all in the same boat and impossible to explain our feelings to anybody not experiencing it

This is exactly how I feel. My husband will not go anywhere so I'm trying to find some places for me to go. I do fear the unknown which is making me depressed!
 

Ellaroo

Registered User
Nov 16, 2015
161
0
Liverpool
I have my 90 yr old mumliving with me for 7 yrs because of dementia .
If I think of the future id crumble. I have friends at local keep fit club who have close relatives with dementia , mainly mothers and fathers of peoplw who attend .
We always have an update talk and sometime compare how things are progressing. We give each others tips and support .
I have joined a gym as rec by my dr because of mum and i wish id done it sooner. I love the age range in classses i go to and look forward to it each week.
I make most of respite , joined a community art group and attend carers centre eg for courses, now doing family tree. I do as much as i can to mix with other people and take my mind off situation.
Mum been in hospital 4 wks! Had a fall but no bruises or injuries , slightly low BP which has been addressed. Mum has had 2 UTIs, resulting in her lashing out at staff.
I have agreed to help and want am and pm care package. Got some different roilet and bathing equipment but cant understand why mum still in hospital .
I am having a slight break but visit every day and prompt mum to walk more as staff quick to put pad on mum when she was continent at home.
Seems to be continual challenges which stop and move on to next one.
Tomorrow is another day , keep your chin up xxxxxx
 

Pollyanna153

Registered User
Jul 15, 2015
41
0
This is exactly how I feel. My husband will not go anywhere so I'm trying to find some places for me to go. I do fear the unknown which is making me depressed!

Well after next day at centre I took him to town and when he seen three or four people together he said to me what are you going to do with all these
He seen them as boat people who come over here some Babies were being pushed round in like a big buggy probably from the nursery he wouldn't believe me he said they just come over here
I give up will stay at home this week
 

bookworm26

Registered User
Mar 21, 2016
1
0
living in the moment

Dear Lynne68,
I am so sorry you are suffering like this. I have found that not thinking of the future is the only thing that helps when I feel as you do. Just try to live in the moment like the person we love who has dementia, does. Get through this minute, this hour, this day and tell yourself how very strong you are to have come this far. Shut yourself away somewhere for a few minutes and play some beautiful music to take your mind away from it all .... sometimes those few minutes are just enough to help you cope. I wish I could make you a cup of tea and tell you it's all going to be alright, you will be o.k., one way or another.

living in the moment seems to be the most popular advice given but its also the most pointless .
there never is just a moment theres the next moment coming along the next day , hour , week ,i look after my mum who has dementia , my dad , who hasnt got dementia but has turned into an attention seeking child & my hubby who has heart probs . sometimes i think im going to meet myself coming back from somewhere i get so many moments
 

baz66

Registered User
Mar 20, 2016
7
0
Hi Lynne I hope your day got better after all the warm and supportive messages. I can't imagine how difficult and stressful your life must be. Can you get any carers in to help you and give you some respite? My dad looked after my mum for 5 years (she moved into a care home two weeks ago after a crisis over Christmas and 2 months in a Mental health unit. ). I wish he'd sought help earlier but he didn't really know where to turn. Now I know he could have contacted social services. Have you tried that? You can get a needs assessment as a carer. Dad's social worker, that he got once mum had been sectioned, has been fantastic. I'm sending you lots of strength and positive thoughts in this difficult time.



I can't cope with this much longer! The thought this could be my life forever gets me in a panic? I'm always crying because of whats going on!
 

Lynne68

Registered User
Mar 3, 2016
28
0
Trying to take each day as it comes but I'm still finding it very difficult. My husband was up and about half the night disturbing my sleep. Lack of sleep means I find it harder to cope! Now he's dosing in his chair probably another disturbed night ahead? Thank you for your helpful posts.
 

Shedrech

Registered User
Dec 15, 2012
12,649
0
UK
Hi Lynne68
not to sound silly? - can you put a bell or something on/near to your husband when he dozes so that you can doze too but be woken if he starts to wake up - that way, although your nights may be disturbed (sorry, I'm no help with that) at least you get to rest when he does (rather than be tempted to do chores that on the whole can wait)
I now have visions of husband in chair wearing a Noddy hat ;)