feeling very tired and lonely at times

[Cymbaline]

I know I should be calm and accepting, but I have made a special effort all day to be kind and helpful to my husband who was diagnosed with AD 5 yrs ago .
I have just got him ready and into bed and sat down with a glass of wine . I'm furious with him for peeing on the settee half an hour before bedtime while was in the loo in the next room. Now I'm ashamed of myself for even telling him about it. Like everyone else I'm tired and not sleeping well. Friends, neighbours and family all tell me to look after myself, but I feel like shouting "How the hell can I do that?" Any ideas of how to bite the bullet and ask his brothers to stay with him overnight so I could sleep undisturbed?

Hey. You're only a human being at the end of the day, not a superhero. Everyone has their limits and it's not wrong to be mad with your husband. I think most people do get mad at their loved ones despite their best efforts - looking after someone with Alzheimer's is a frustrating thing at times.

I think you should explain straight out to his brothers that you need a break. I can't see how they could possibly refuse in the circumstances. Unfortunately, not everyone can see what a tough time you're having and are never going to offer to help without being asked. Good luck!

 

[dedicated doe]

everyday is different

HI Again, yesterday was pretty good dave was laughing with us all for most of it then as time went on he had worn himself out and slept for a good few hours,when he woke he could not remember anything about laughing or talking my heart bled for him,like so many others i always ask WHY! why does this have to happen to our loved ones when there is so many bad people around it just does not make sense, i had a shock just an hour ago my door bell went and Dave was standing outside, someone had shown him home he was wandering up the road,thank god people know us i feel guilty because i never heard him go out, now all the doors are going to be locked when we are all at home at least i can follow him around if he leaves the room for more than five minutes. Thanks

 

[Skye]

Dear Doe, it's so hard, isn't it? And so scary when our loved ones start wandering.

How much support do you get? You mentioned a daycentre, but do you have carers coming in to let you get out for a bit?

Have you had a carers' assessement? It not, you should ring SS and ask for one. You sound as if you are desperately in need of a break, and you are entitled to one. If you are ill, who is to look after Dave?

Please try to get some help. And keep posting, you've got friends here who will support you.

Love,

 

[dedicated doe]

Thankyou for the comments

HI Hazel, many thanks for your kind words,Dave goes to his centre for three days which is a big help and all the staff are so kind, i am waiting at the moment for the direct payment scheme to be finalised so i can get extra help for when he is home,although i have three children with learning difficulties at home too i am still trying to have at least half an hours sit down time to rest but as yet i have not adjusted my thinking to doing so,still i suppose it will come in time, i try to organise my routine daily and everything is written down on a big notice board for all to see,it works o.k.for some of the time then i have to go into overdrive when things get crazy,i am glad i logged onto your site there are people out there who are having a worse time than i do at times,but it is such a comfort to know i am not alone.Thanks again.

 

[dedicated doe]

some advice please.

HI Again, i have been alittle frustated today can anyone advise me, as usual on sundays i like to get my ironing done as there is never enough time in the week,and have noticed how restless my husband is becoming, he was in and out of the back room constantly asking me to sit with him i told him i had to iron and he could come and sit in there with me but he just sulked started wandering about then continued to nag at me,i moved the ironing board to the doorway so he could see me he seemed o.k. with this for a while till i finished,one thing that has upset me is the sly comments he has starting making towards me if i ask him again what he has just said he just grins and denies he said anything,i feel he is punishing me in some way because he is now very clingy to me,says he does not want to go to the centre but i get insistant with him, i am feeling guilty with myself for going against his wishes i do not know how long it will be before i give into him what do i do for the best! Thanks Dedicated Doe.

 

[Nell]

Dear Doe,

It is so difficult in every way. I think you need to hold onto the fact that your husband's behaviour is the illness and not the real person. When he looks sly and won't repeat what he said, it may be because he cannot remember what he said. Or if it is because it was something nasty, he may still realise he shoudn't be saying such things . . . . ?? Who can know??

i am feeling guilty with myself for going against his wishes i do not know how long it will be before i give into him what do i do for the best!

Please keep insisting that he goes to the centre, even if he doesn't want to. You need the break and there is no justifiable reason for him not going. Chances are he could say later you prevented him from going!!

Someone else said on this forum recently:
As Carers, we do what is right and not what is easy. It would certainly be easier to give in to him, but in the long run, neither of you would benefit. I hope for your sake you can keep insisting he goes to the Centre.

My heart goes out to you and all Carers with a loved one patient at home. You are amazing and I am truly in awe of your commitment. But when you can no longer do it, there is no shame or disgrace in admitting he needs more care than you are now able to give.

Thinking of you.

 

[Grannie G]

Hello Doe,

I think when our husbands are unable to occupy themselves usefully they resent us having things to do. It makes them feel more useless than ever.

I have the same with my husband, if I garden, or iron or do any form of housework. Sometimes we can joke about it, and he`ll say,
`I`ll do the ironing.`
And I`ll say `You iron creases into a handkerchief, `and we`ll both laugh.
Years ago he tried to iron, and literally did iron creases into a handkerchief, so he remembers it because it was so long ago, and can see the funny side.

He likes to vac, as it`s one of the things he can still do, but he doesn`t move any furniture, so just vacs what he sees. And I leave him to it.

But I can hardly do any gardening now, as he is lonely sitting in the house by himself, and hates gardening.

He also follows me around, asking how much longer I`ll be. It is really hard as they just don`t know what to do with themselves.

The sarcasm is a means of defence. `if you can`t fight, wear a big hat` type of thing. It`s hurtful, when you are trying your best, but it isn`t seen like that. It just highlights all the things they can`t do.

But at least you`ve managed to get your husband to go to day care, which I haven`t even been able to suggest. So you`re not doing so badly.

It`s very challenging, very upsetting and hurtful and we can do little about it.

Love xx

 

[dedicated doe]

sylvia and nell

Many thanks to you both for your comments,i will just take each day as it comes and if i get upset with what Dave says or does i will think of all the other carers who are or have been through these problems with me.Thanks again Dedicated Doexx