Tips for coping

[Spamar]

Sorry for those of you who think I've got answers, I want answers!

OH, later stages of mixed dementia, still at home, I'm the only carer. Having said that he does go to daycare three days a week.
My health is not as good as it could be which may be a factor here.

It's the constant repetition, it's the I'm divorcing you, it's the unexpected nastiness, it's the I don't live here, it's the urinating everywhere, it's the speed of doing things - a snail would be faster! It's the fact I have to wait around so much, he can't be left. It's the having to adjust everything I do, the meals I eat, where I go, the cafés we go to, the no days out, the no holidays. It's the no speaking to me. It's the no joke stage in both senses.
I've just had enough of all this. I'm fed up, I'm bored, I'm stressed out.
I've read all the books, go to several groups, done the courses. I've been caring for 10 years ( to be fair, not all at this level!)

So why can't I cope anymore? I've had two spells of respite in the last year, one after carer burnout, ( self funding, probably wouldn't have got it from SS ) which I think helped a bit.

Answers please!

 

[Chuggalug]

Sorry for those of you who think I've got answers, I want answers!

OH, later stages of mixed dementia, still at home, I'm the only carer. Having said that he does go to daycare three days a week.
My health is not as good as it could be which may be a factor here.

It's the constant repetition, it's the I'm divorcing you, it's the unexpected nastiness, it's the I don't live here, it's the urinating everywhere, it's the speed of doing things - a snail would be faster! It's the fact I have to wait around so much, he can't be left. It's the having to adjust everything I do, the meals I eat, where I go, the cafés we go to, the no days out, the no holidays. It's the no speaking to me. It's the no joke stage in both senses.
I've just had enough of all this. I'm fed up, I'm bored, I'm stressed out.
I've read all the books, go to several groups, done the courses. I've been caring for 10 years ( to be fair, not all at this level!)

So why can't I cope anymore? I've had two spells of respite in the last year, one after carer burnout, ( self funding, probably wouldn't have got it from SS ) which I think helped a bit.

Answers please!

Oh Spamar You know, when things are listed like this, it makes me sit up and think, because I'm now so used to one day rolling into the next that I don't list anything any more.

Like you, I'm a lone carer. For meals? I'll still get things I like and have two things going in the oven at once. Fish or pie for hubby, while I have something completely different.

He won't eat pasta or rice. I love the stuff, so plan accordingly.

If you've no one to chat with, come over to the Positives thread, by Chick. Yesterday, we were all having a musical afternoon. Was a great laugh. You need to laugh, my friend. I'm so sorry you're feeling so down. I've had a sore neck and spine for the last few days. Had some lovely empathy and sympathy over on Positives. Do come over.

Much love, Jen xx

 

[Tin]

Feeling exactly like you Spamar, bit of a slump knowing today will probably be the same as yesterday, so going to check out the positive thread as recommended.

 

[Chuggalug]

Feeling exactly like you Spamar, bit of a slump knowing today will probably be the same as yesterday, so going to check out the positive thread as recommended.

Morning, Tin. You feeling it too?

Wishing you peace today.

 

[AlsoConfused]

So why can't I cope anymore?

Because you've had to give too much, for too long without any adequate breaks? You say yourself you've reached the stage of carer burnout. Maybe your inner self is nagging you it's time to think about full-time care.

 

[Spamar]

Had carer burnout last year. Was nearly there again early tis year, hence his 2 nd respite period. But that was less than two months ago. Maybe you're right, time for full care.
Yes, I have cooked two different meal, well put 2 different packs in oven/ microwave. I cook very little these days and when I do, I have to do all the prep the day before. He also doesn't eat pasta, lumps of solid meat. I'm not sure he knows what he's eatingTBH. Once when we were out he chose mussels and hated them. He's loved them previously! He now gets me to choose for him.

 

[Chuggalug]

Had carer burnout last year. Was nearly there again early tis year, hence his 2 nd respite period. But that was less than two months ago. Maybe you're right, time for full care.
Yes, I have cooked two different meal, well put 2 different packs in oven/ microwave. I cook very little these days and when I do, I have to do all the prep the day before. He also doesn't eat pasta, lumps of solid meat. I'm not sure he knows what he's eatingTBH. Once when we were out he chose mussels and hated them. He's loved them previously! He now gets me to choose for him.

Really hard work, ain't it. And then, when the plate of food falls to the floor...

(Picture face going red! No, perhaps not...)

 

[Spamar]

Haven't had that yet. Other things on the floor, yes......
Another problem is that he eats very little - except sometimes! So if we go out for coffee in the morning, and these days it's usually late morning, you can't get him to eat lunch until mid afternoon, by which time I'm starving or stuffed with cake/kitkats/anything I can lay hands on!
Fortunately his pills are all taken in the morning. Mine are twice a day, some with food, so have to have something in the evening, though I've found jelly in a pot useful. Big enough to take up to 6 tablets, not many calories.
On the other hand, he has been known to eat a packet of choc digestives....

 

[Essie]

Oh Spamar, I have to say also that it does sound like it might be time to make the change to full time care for your OH. It's a horrible decision to have to make but sometimes it helps to stand back and view it as you giving advice to someone else (as you so often do on here) what would you say to someone else in your position...?

I read a very good phrase when I was in the midst of caring for my Mum "their's (meaning the patient) are not the only feelings that matter" - your life matters too, the quality of it, and your health, mental and physical. It's a big decision but not obviously not an irreversible one so don't feel it's home or a home and that's it. I was lucky as our GP eventually suggested it might be the best choice for Mum but I think I had already got to the point you're at when I was trying to arrange a week's respite and thinking "is that all, only a week off ....."

Wishing you well.

 

[Spamar]

Hi essie, thanks for the reply. Today's happenings I've told elsewhere ( positives) it is a big decision and I'm being very indecisive. Not like my usual self. On day it's the right decision, the next, I think I can cope! Once he goes into care, money is going to be a problem, he will be self funding for a year or so. All these things to think about! It's just so difficult.
When I first came on this site I was surprised at the number of threads about just that decision. Now I know why!

 

[AlsoConfused]

Hugs. Uncertainty on top of exhaustion and being unwell, I can't imagine many more hellish combinations. Please be patient and tender with yourself.

 

[Essie]

Hi essie, thanks for the reply. Today's happenings I've told elsewhere ( positives) it is a big decision and I'm being very indecisive. Not like my usual self. On day it's the right decision, the next, I think I can cope! Once he goes into care, money is going to be a problem, he will be self funding for a year or so. All these things to think about! It's just so difficult.
When I first came on this site I was surprised at the number of threads about just that decision. Now I know why!

I was just the same, one day it was fine, the next I was so exhausted and worn out i didn't even have the energy to think let alone do anything about the situation - for me it was sleep deprivation that was the real killer as I would be up 3/4 times a night to Mum and it just started to take too much of a toll. And I do sympathise with the 'taking over your life' aspect - it controls/dictates everything.

Am so glad you have had some positives today - it gives you such a lift and replenishes you I think - we have to hang on to the good feelings and hopefully they carry us through the grotty stuff!

 

[Spamar]

Many thanks everyone., it's good of you.
I've been through the sleepless stage, but fortunately only lasted a month - OH had come out of hospital and bladder had a mind of it's own! I do feel sorry for you!
Here's to tomorrow!

 

[Kath1947]

Really stressed out & feeling resentful

My husband was diagnosed 4 years ago, six weeks ago he had a really bad fall and this has been the finish of him, he can't do anything now even forgetting how to walk, l am his only carer and he has now started to be incontinent, he has just tried to dunk a China coaster in his coffee. This message is all messed up cos that's how l feel he's just asked when we are going home and where his wife is.........at about 7 he will start asking if it's bedtime and become very agitated and restless. This is my first post cos l feel I am at the end of my tether sorry for being such a whinge bag but my life like all of you l suppose Groundhog Day.

 

[LadyA]

Ah Spamar. I know my OH has been in full time care now since September last. But I well remember the awful struggle to keep going the last year he was at home. The almost desperate telling myself that I was coping - I was just tired - it was just a bad day - it would be better tomorrow, next week, - maybe if I did some things differently. While all the while, deep down, I was sinking further and further into the bog that is called "overwhelmed". Between April and September last, William went into respite care I think four times. - Once for a planned two week stay, once for an emergency two week stay, one planned one week stay and one emergency one week stay. And it was "only" four times because the CPN couldn't get him a bed any oftener.

I remember every item on your list - and could add a few more. The no visitors. The not being able to speak to anyone on the phone because he would just start pulling me away. The only sleeping for 1 1/2 to 2 hours at a time.

I'm so sorry that you are feeling such burnout and exhaustion. I'm afraid that I too think it may be time for the decision. But as awful as it is making that decision, I can also say that I and others on here have found that our loved ones have actually thrived in full time care. We wear ourselves out doing the best we can, and giving the best care we can - but it's not enough. We just can't do it on our own. In my William's case, I have found that he is so much more relaxed and content in the nursing home than he was at home. And although now, he is deteriorating again, for a while his health improved greatly and he even gained weight. He has the stimulation of extra company, a save environment to walk around in, constant warmth, trained staff to help day and night. We have to finally come to realise that sometimes providing our loved ones with the best possible care means handing their day to day care over to someone else. And for us, that gives us a measure of quality time with them on our visits, and a measure of quality of life back for ourselves.

Best wishes.

 

[Spamar]

Yesterday was a new one.
Apparently he was difficult at day care, not his normal self at all. One of the nurses brought him home but he refused to come further than the back door. Then he refused to take his coat off. He wasn't going to stay here, he was going back to daycare. So K explained that daycare was closed for the weekend. We eventually got him to sit in his armchair, still with his big coat on.
He wouldn't talk to me at all, not even answer ' do you want a coffee? ' So he sat there for three hours, in front of the woodburner, before saying 'why have I got this coat on ' and 'can I go to bed?' Needless to say, I whizzed him off to bed in short order!
Yet on Wednesday I took him to gp, he went out with respite carer, spent pm with me and he was absolutely fine. Chatting, starting conversations, not a nasty word all day. Why can't he be like that every day?
Part of the problem for me us the uncertainty. When he gets up in the morning/ comes back from daycare I never know how he will be. It's very wearing, to say the least.
If he's still here, hopefully there will be respite in June, so I can see friends/relations in Leicester and perhaps spend a day at Launde Abbey. I'll probably be ready for cataract op at end of summer as well.
Thanks for your help
S

 

[esmeralda]

My husband was diagnosed 4 years ago, six weeks ago he had a really bad fall and this has been the finish of him, he can't do anything now even forgetting how to walk, l am his only carer and he has now started to be incontinent, he has just tried to dunk a China coaster in his coffee. This message is all messed up cos that's how l feel he's just asked when we are going home and where his wife is.........at about 7 he will start asking if it's bedtime and become very agitated and restless. This is my first post cos l feel I am at the end of my tether sorry for being such a whinge bag but my life like all of you l suppose Groundhog Day.

Hi Kath, you are having an awful time. Glad that you have been able to post on here as it sounds like you really need to be able to share what is happening and get some advice. Do you have any respite/support? You're absolutely not a whingebag but need some help before you become completely burnt out. Sending love and a big hug to you. Es
xxxxxxxxxxx

 

[esmeralda]

Yesterday was a new one.
Apparently he was difficult at day care, not his normal self at all. One of the nurses brought him home but he refused to come further than the back door. Then he refused to take his coat off. He wasn't going to stay here, he was going back to daycare. So K explained that daycare was closed for the weekend. We eventually got him to sit in his armchair, still with his big coat on.
He wouldn't talk to me at all, not even answer ' do you want a coffee? ' So he sat there for three hours, in front of the woodburner, before saying 'why have I got this coat on ' and 'can I go to bed?' Needless to say, I whizzed him off to bed in short order!
Yet on Wednesday I took him to gp, he went out with respite carer, spent pm with me and he was absolutely fine. Chatting, starting conversations, not a nasty word all day. Why can't he be like that every day?
Part of the problem for me us the uncertainty. When he gets up in the morning/ comes back from daycare I never know how he will be. It's very wearing, to say the least.
If he's still here, hopefully there will be respite in June, so I can see friends/relations in Leicester and perhaps spend a day at Launde Abbey. I'll probably be ready for cataract op at end of summer as well.
Thanks for your help
S

Hi Cornish girl. The unpredictability must be so difficult to deal with. I can definitely identify with a lot of the difficult things that are going on for you but know I am so lucky that my OH is consistently calm and pleasant. I'm not clear about how the respite thing works but perhaps if you are to keep your husband at home this needs to be much more regular. Do you read Grey Lad's thread 'News from Cleethorpes' in the Tea Room? It might be useful for you as he's going through the process of fighting to get adequate respite. Hope you get the help you need. Much love, Es
xxxxxxxxxxxxxxx

 

[stanleypj]

My husband was diagnosed 4 years ago, six weeks ago he had a really bad fall and this has been the finish of him, he can't do anything now even forgetting how to walk, l am his only carer and he has now started to be incontinent, he has just tried to dunk a China coaster in his coffee. This message is all messed up cos that's how l feel he's just asked when we are going home and where his wife is.........at about 7 he will start asking if it's bedtime and become very agitated and restless. This is my first post cos l feel I am at the end of my tether sorry for being such a whinge bag but my life like all of you l suppose Groundhog Day.

This must be so hard for you Kath. I find that the smallest downward turn can start to throw me but you are having to deal with a massive change.

The loss of mobility is a gamechanger for many people. Do you have any help at all? Have you had a carer's assessment? Would it help to talk thing over with an expert? (If so you can contact an Admiral Nurse). There is help out there, even though no-one can wave a magic wand. Please keep posting and reading - that can be a real help too.

No carer on TP can possibly be described as a whinge bag. There's so much we have to deal with.

 

[Grannie G]

My husband was diagnosed 4 years ago, six weeks ago he had a really bad fall and this has been the finish of him, he can't do anything now even forgetting how to walk, l am his only carer and he has now started to be incontinent, he has just tried to dunk a China coaster in his coffee. This message is all messed up cos that's how l feel he's just asked when we are going home and where his wife is.........at about 7 he will start asking if it's bedtime and become very agitated and restless. This is my first post cos l feel I am at the end of my tether sorry for being such a whinge bag but my life like all of you l suppose Groundhog Day.

Please start your own Thread now Kath. You will get so much more support.

http://forum.alzheimers.org.uk/forumdisplay.php?69-I-have-a-partner-with-dementia

I remember when my husband began to lose his mobility. It was devastating.

First came times when he was unable to get up from the table after eating. Then he would move his feet on the spot, rather than go forwards, then he was afraid of crossing thresholds. All terrible memories so I really do know how you feel.

Inability to either get to the toilet in time or loss of feeling or any other reason heralds the start of incontinence. My husband welcomed incontinence pants when I told him they would save him having an accident.

That in itself was heartrending. He became so vulnerable.

Love to you Kath. You are in a bad place just now.