And so it goes on...

Duggies-girl

Registered User
Sep 6, 2017
1,787
Gosh that must have so frightening for you, worrying about him out there on his own at that time!:eek: It’s so difficult not to feel resentful in situations like that. I hate having to say I can’t help people out now, we just have to hope that they understand but I’m not sure they really do sometimes and it makes you feel so guilty, but I’m glad he made it home ok:) xx
Thank you @Fishgirl he's a big boy and it was his own silly fault but he is home now and yes it was so frustrating and I was just so cross because I could have solved the problem so easily and willingly but I couldn't. I am not cross my son, I am cross that I am in this situation and it is stopping me from being a normal wife and mum.
 

Grahamstown

Registered User
Jan 12, 2018
1,594
East of England
I agree that it’s the living with a person with dementia gradually eats into your psyche and you have to struggle to feel that you are staying sane. I am so sorry about your feelings of helplessness @Duggies-girl , it shouldn’t be like this but unless an emergency adult sitting service is created then we have to rely on family or friends if there is no service in the area. I can leave him alone for a short time and this afternoon I just couldn’t face the considerable effort to take an unwilling man to our son’s so left him in bed watching TV and went alone to deliver Christmas presents. I had a welcome break and tried not to talk too much about him but other things, it was a welcome break. I am finding all the jolly Christmas messages and the relentless festive atmosphere very difficult to cope with, not least because one has to try to join in. It all seems so meaningless.
 

Duggies-girl

Registered User
Sep 6, 2017
1,787
I agree that it’s the living with a person with dementia gradually eats into your psyche and you have to struggle to feel that you are staying sane. I am so sorry about your feelings of helplessness @Duggies-girl , it shouldn’t be like this but unless an emergency adult sitting service is created then we have to rely on family or friends if there is no service in the area. I can leave him alone for a short time and this afternoon I just couldn’t face the considerable effort to take an unwilling man to our son’s so left him in bed watching TV and went alone to deliver Christmas presents. I had a welcome break and tried not to talk too much about him but other things, it was a welcome break. I am finding all the jolly Christmas messages and the relentless festive atmosphere very difficult to cope with, not least because one has to try to join in. It all seems so meaningless.
Same here @Grahamstown like you I can pop out in the day to the supermarket or even home for a cup of tea and he will just sit in his chair asleep but after dark it is different because he can't find the bathroom and the kitchen is a mystery to him. Dad probably won't ever leave his house ever again unless it is an emergency like a bad fall. I certainly won't take him anywhere and his hospital check ups have been stopped as they are pointless now.

I have to write out cards for dads neighbours sometime tonight then I will pop them through the letterboxes in the morning. I am glad that you managed to get out for a while. I used to have a coffee in the Asda cafe sometimes when I did his shopping and I used to enjoy that just sitting on my own but it is now a Macdonalds so that is gone too. I can't get any enthusiasm for Christmas either. Oh well on it goes.
 

White Rose

Registered User
Nov 4, 2018
344
It sounds like we're all in meltdown, so hard isn't it. I've had a couple of really horrible weeks but I've got a new carer who came to 'babysit' on Friday evening so I had a couple of hours out for dinner for the first time in months, my partner seems to like her and she's coming back tomorrow morning so fingers crossed. He doesn't like the day care, though I only leave him for 3 hours, too much sitting around with nothing to do, so he tells me. But lately he's been asking why he doesn't have any friends, I just wish his children would phone him sometimes - I feel so sad for him. And the responsibility of having to do absolutely everything at home all the time and the worry and not having your companion to discuss things with or just chat about life in general and help you out with the chores or even just make you a cup of tea, well it all does get too much sometimes doesn't it.
 

Justmary

Registered User
Jul 12, 2018
81
West Midlands
What a relief to read your posts. I've been sitting here tonight feeling quite low. I'm so fed up with this existence. I just want to have a normal life again, like other people have. I'm sure I'll pick myself up tomorrow and carry on once more, but tonight I just feel that it's all too hard.
 

jenniferjean

Registered User
Apr 2, 2016
662
Basingstoke, Hampshire
I'm sure I'll pick myself up tomorrow and carry on once more, but tonight I just feel that it's all too hard.
We do don't we? We pick ourselves up and we carry on. It's all we can do, but it does seem so unfair. I'm sure it seems so much harder at this time of year when other people are enjoying the festivities with their loved ones. I wish my friends and family a "Happy Christmas", when inside I'm saying "life stinks".
 

Grahamstown

Registered User
Jan 12, 2018
1,594
East of England
I thought about all this and decided that I had to change my caring regime. Sadly it’s more hands on and less of trying to encourage him to do things for himself. I am reviewing my feeding method and after the New Year I am going to have another consultation with the doctor. As Clive James reported about himself, my husband is dying by inches. It’s just so awful when I see him as he really is that I can’t cope, I have to distance myself which makes me less loving and more bossy because he needs instructions to do absolutely everything. When I do show him affection he is pathetically grateful that just thinking about it makes me cry. But with my reflections and resolutions I do feel less stressed than yesterday, so chin up everyone and KBO.

P.S. I think it’s the emotion of Christmas, preparations, gift buying, food organising even for a low key Christmas that is pulling me down. Constant exhortations to have a wonderful Christmas and New Year don’t help.
 

Fishgirl

Registered User
Sep 9, 2019
134
Yes it’s definitely Christmas that’s making me feel so weepy, I keep thinking about the Christmas’s we used to have up to 2 years ago, when our family would come for a big Christmas lunch,which hubby would help prepare and we’d play silly games after and it would go on for hours.They will still call after lunch for an hour but even that will probably stress him out! The next best I can hope for is that he goes to bed early and I can get the Baileys and chocolates out and watch a bit of Christmas telly in peace :rolleyes:xx
 

Grahamstown

Registered User
Jan 12, 2018
1,594
East of England
My more hands on approach is helping because rather than expecting him to do anything, I don’t expect him to do anything. Today I got him showered, shaved, teeth brushed and dressed ready to go to the dentist, an excursion I have been dreading for ages. Before that I walked to the fish van for his lunch and had a fortifying coffee at the nearby coffee shop. I got it all done by just bashing on regardless and almost wept at how emaciated my beautiful boy has become. His sweet mind is still there though. His teeth are fine so no trouble there for eating so it’s definitely the disease. Then I decided to get his hair cut and get it all over with on one morning. There was a wait at the barbers and he had a snooze. Exhausted into bed after soup and rice pudding. Me too!
 

jenniferjean

Registered User
Apr 2, 2016
662
Basingstoke, Hampshire
My more hands on approach is helping because rather than expecting him to do anything, I don’t expect him to do anything. Today I got him showered, shaved, teeth brushed and dressed ready to go to the dentist, an excursion I have been dreading for ages. Before that I walked to the fish van for his lunch and had a fortifying coffee at the nearby coffee shop. I got it all done by just bashing on regardless and almost wept at how emaciated my beautiful boy has become. His sweet mind is still there though. His teeth are fine so no trouble there for eating so it’s definitely the disease. Then I decided to get his hair cut and get it all over with on one morning. There was a wait at the barbers and he had a snooze. Exhausted into bed after soup and rice pudding. Me too!
Yes, I don't expect anything of my husband. In fact I wish he'd do less. Every now and then he'll wander into the kitchen and start to "h e l p". Then when he comes out, I go in and put it all right again. His helping is by putting dirty dishes and cutlery on the draining board mixing with all the stuff I've already washed. I guess he no longer realises there is any difference.
 

Grahamstown

Registered User
Jan 12, 2018
1,594
East of England
then he'll wander into the kitchen and start to "h e l p".
This behaviour is quite beyond him now. He is a poor old thing but I think is contented in his own world. It’s when his world rubs up against mine that he is stressed as I ask him to dress, wash, shave, eat, the last being the worst for him. Trying to get him to do anything in the ‘real’ world is hard because it’s not his world. What to do, what to do? I just press on with my palliative approach, getting desperate at times. When did I first write that? It must be about six months ago. It’s a long old haul and I have only been going two years.
 

big l

Registered User
Aug 15, 2015
34
I don't feel so alone now. I can hear myself in all these posts and I know now why I have been crying. It's just too sad at Christmas. Nice to know you're all here, it feels lie we're all silently holding hands.
 

Grahamstown

Registered User
Jan 12, 2018
1,594
East of England
I don't feel so alone now. I can hear myself in all these posts and I know now why I have been crying. It's just too sad at Christmas. Nice to know you're all here, it feels lie we're all silently holding hands.
It’s a wonderful community of support and advice. It’s such a dreadful disease and hurts the loved ones so deeply that fellow feeling does make a difference although we have to battle on. I have given up the unequal struggle to get him to eat now after dark moments of desperation. It’s so against all instincts but it’s so difficult and he refuses. Even his favourite cups of tea get left to go cold and the only things I insist upon are water and supplements. I choked up driving home this afternoon when some music was played. I had gone to change a damaged pair of wool socks, a birthday present from his son. He has them on and they are super cosy. My thoughts are with you all my TP friends.
 

Grahamstown

Registered User
Jan 12, 2018
1,594
East of England
I can look after him as long as I don’t have to see him sitting drooping over in his chair. Then I put him to bed where he usually goes to sleep. When I am with him I hate it. Today even the carer reported that she had to feed him to get him to take anything, and he has choking episodes now from time to time. If the TV is turned on he will keep his eyes open for a while. It’s a dreadful existence of which he is unaware. I can see this going on for some time.
 

Duggies-girl

Registered User
Sep 6, 2017
1,787
I can look after him as long as I don’t have to see him sitting drooping over in his chair. Then I put him to bed where he usually goes to sleep. When I am with him I hate it. Today even the carer reported that she had to feed him to get him to take anything, and he has choking episodes now from time to time. If the TV is turned on he will keep his eyes open for a while. It’s a dreadful existence of which he is unaware. I can see this going on for some time.[/QUOTE

@Grahamstown I can relate to that and I feel sad for them but mostly sad for us Dad got up at 1.30 this afternoon. I had to badger him into it as I needed to go shopping and I don't like to leave him in bed. He immediately went to sleep in his chair but I gave him his breakfast anyway. He ate half of it then sat in his chair coughing. I have to keep reminding him to take a sip of his fizzy drink because that's what it is there but he hasn't got the sense anymore to take a drink, he would just sit there coughing. I find that hard but he still eats and as long as he eats, he will keep going..

I look back to this time two years ago. He weighed 8 and a half stone and was fading in front of me. I was at my wits end then the cancer diagnosis and the referral to the hospice and he was confused enough then.

Then this time one year ago he weighed eleven and a half stone but a bit more confused, then the pneumonia etc and a big physical and mental decline but he has settled at 10 and a half stone now and here we are again.

So what to think about this time next year. I dread to think about it. He will be 90 in April and I can't think past that.
 

Grahamstown

Registered User
Jan 12, 2018
1,594
East of England
Oh @Duggies-girl we really are in the same situation and it’s so heartbreaking watching our men decline. Like you I look back two years and I was going through a terrible time with his alcohol problems when he was still leading his own life and had no diagnosis, although I knew something was not right. He is skeletal now and I wonder how he can still bear his own weight, but he can still just about climb the stairs. One minute I think he can’t last much longer and the next that he could keep going a long time just ticking over. It’s no good looking forward at all. He is nine years younger than your Dad who is amazing the way he just keeps going. I know he has cancer and my husband has too but very slow growing and not fatal. I have had a bad day but my daughter and family came over for pizzas and that really cheered me up. He enjoys their visit too and and watches TV with the grandchildren while we go to get the food. Lovely!