My Pals doesn't want to go out anymore..

[poppy62]

We reached a new situation today, it's been coming for a little while. My Pals doesn't want to go out anymore, not even to see his elderly parents and sister who live 40mins away by car. His mobility is failing but he can still do a few steps, enough to get in and out the car, transfers etc. He doesn't even want to get dressed and snuggles under the duvet naked...I have to nag him to put underwear at least on when visitors are due.
He doesn't take his anti-dep meds at all, and resists all help to make him more comfy, he 'endures' gp/nurse/physio visits, you can see it in his face that he can't wait for them to go, he just wants to be left alone, apart from me that is, who he requires by his side at all times..and I am, apart from bathroom visits and trips to the kitchen.

I love him to bits and am doing my best to look after him but the prospect of not setting foot outside the door for who knows how long is a bit daunting.
I actually don't 'need' to go anywhere (but it would be nice to know I could pop out). I shop online, meds are delivered, even the gp does home visits. My children come by now as it's been getting harder to visit with hubby as he is.
But now I find myself wanting an hour or so by myself. Not for any great purpose but just a change of scenery, a bit of window-shopping, recharge my battery, think of something other than hubby's als. Does that make me a bad person?

I know he is frightenend to be on his own for any length of time, I can't leave him but I have just recently considered getting a sitter, which didn't go down well. I can't make him see I am affected by all this too. It's not that I want to leave him, I just need a little break away from it now and again. He behaves like I want to vanish into the sunset.
It doesn't help that the weather's turned and he feels the cold so bad but he won't wrap up

My daughter said she would stay with him for me to visit my grandchildren but he said no. He can be a difficult man. Do I just go ahead and bear the brunt when I get home?
How do so many people cope with their loved ones? How do you cope with yourself if you do leave your Pals with a sitter (family or other)? Am I selfish for wanting an hour out? Any advice welcome, any different approaches I could use?
Has anybody left their Pals with a sitter against their wishes...how did it pan out?

 

[momap53]

So sorry, Poppy! You really do need to get out for a bit on your own. You do need to recharge your batteries. You'll be a healthier and a better caregiver for it. I'm so sad that Clive is refusing to go while he is able. It will become increasingly difficult for him. It's a real shame to miss out on the opportunity to go while he can. Please discuss his behavior with his doc.

Prayers for the both of you.

 

[vzandt]

You absolutely need an hour to yourself now and then. There is nothing wrong with it and you have nothing to feel guilty about. I need time alone and if I don't get it I get cranky. Even if I stare at the wall looking stupid...I need time. You've got someone to sit with him. Take some time Poppy. You deserve it.

 

[ottawa girl]

I understand a bit about Clive wanting to hide out- I've felt that way a time or two myself. That being said, love in a marriage is a two way street (in my world). You will be drained and of little use to anyone, especially to Clive, if you do not take care of yourself first. (like on a plane when they tell you to put the oxygen mask on yourself first and then help others). Quite frankly Poppy, and with all due respect, you must not enable Clive's behaviour- if he chooses to stay in, he is choosing that for himself- not for you. We're not talking about you going out at all hours, painting the town, we're talking about a walk in the park, grocery shopping, coffee with a friend, attending church etc. He needs to made to understand that you are going out- and he has the choice to go with you or stay home alone or with a friend. You owe it to yourself. You owe it to him. Maybe a dose of tough love is needed to shake him out of his funk- stop rearranging the chairs on the titanic- get out there and live your life as best you can- guilt free- and in keeping with the circumstances we all find ourselves in.

 

[caldona]

Tell him your there as his wife and that you love him but that you don't need his permission to go someplace. I encourage my husband to go places we have someone to come in three hours a day. I think you will burn out if you don't get away.

 

[Ms. Pie]

I do too! That said, I understand not wanting to go out. I won't go out without my big strong husband. He can lift me where my wonderful neighbors and friends cannot. It's so difficult to go out. Lots to consider such as bathrooms, transporting from car to wheelchair, and what if I choke? It's very draining.

 

[HelenL]

I also understand not wanting to go out much... bathroom, bad weather, cannot transfer... I just get too tired.

BUT I certainly do not expect to have someone by my side 24/7... you need to go and have some time to yourself... and not feel guilty about it. Arrange for someone to be with him and tell him when you 'll be back.

 

[happygardener]

My husband wont even leave the den..all summer long i managed to get him out in the sun and for the occassional drive but ow he wont leave his chair,wont go to clinic ,wont takes meds and only i am allowed to care for him..I am a prisoner in my home..I have friends to get groceries .Our children come visit..but this is how he wants it...and im trying to abide by his wishes..for as long as i can

 

[Barbie]

poppy and Happy gardener--Oh I feel for you! I was also in your shoes in the beginning of this H---. Like you, I could understand his feelings and out of love went along with it. but really, things must change for you to stay sane and you must be the ones to make the change happen. Not all Pals are like our husbands, but we can not change who they are just how we react to them.

What I did was let him stay inside and away from people, but I began going out once a week just for fun. I had my teens take care of him and he did grumble and complain and say very mean things at first but I didnt give in. Once, I was at a ALSsuppport group meeting (for my fun) and he was sending me nasty text messages the whole time because he didnt like the way my kids fed him...

His attitude did improve with time and drugs and though he prefers me he now lets others care for him. So I say, get someone you love and trust to help you out. get it all ogranized and planned and then spring it on him. And do not give in and get out for some R & R. A couple of hours a week will not hurt him and will help you feel great--which in turn will make you a better caregiver.

 

[Katie C]

I agree with everything Barbie just said! You MUST get some time to yourself. You also need to figure a way to get his anti-depression meds into him. Somehow we CALS go into this with the idea that the PALS is going to call all the shots and we're just there to fulfill their wishes. Wrong! We are dealing with a disease that sometimes lessens the PALS ability to make wise decisions for themself and others. We as CALS must shoulder the responsibility for the physical AND psychological well being of the PALS, ourselves, and our family. We can't do that if we burn out!

 

[poppy62]

Oh ladies, thank you all for your responses. Good solid advice and from both sides of the fence.
I have just been trying to motivate him a bit to see that there is some life left to live but I think he has given up,
and I think I'm having trouble coming to terms with what is happening too.
I also think I've been looking for permission...because I sure as heck won't get it from him...
and then there's that niggling in your head saying "what if....while you're out?"...
Now...I just need to grow a set and do it..

 

[Ms. Pie]

You go girl! You need to live life as well. I encourage my hub to go hiking, skiing and camping whenever he wants. Maybe you could get some in home care while you're gone. Medicare will pay a set amount for doctor approved cases. Check it out!

 

[poppy62]

Yesterday, after a trying kind of week, I did it, took in the sunshine and fresh air.
I gave him an hour's notice then went up the local shop and library, half an hour in total.
He just looked at me..and when I came back he was under his duvet, cwtched up, didn't say a word.
Made me feel selfish, guilty and sad at the same time.
Looking at it now, of course he is going to rebel because he is afraid, frustrated and he has an anxious personality.
The fact he didn't rebel this time made me even sadder.
So much has changed in less than a year, I look at our wedding photo often and can't believe the changes in him.
He's hardly had anything in the last couple of days, I still have fingers crossed he will go through with RIG.
So many issues, so many emotions, its too much for him to come to terms with... he has no fight in him, I think I finally see that now

 

[Danijela]

You will not be able to be there 24/7 as things move on. Introducing assistance now and adapting to changes gradually rather than collapsing with physical and emotional exhaustion later on will benefit both. L is in the vent 24/7. He still goes out, shopping with careers, going to see our son play toddler tennis, nursery pick ups. It takes ages to organise each trip and a lot of sacrifice to manage it. But he's still alive...D

 

[Barbie]

poppy I am so sorry that clive doesnt want to fight. There is always life worth living, and most Pals here exude that. For you, it is terrible to see the love of your life giving up when you don't want him to.

I hate to say it but no matter what you must keep on living dear lady. keep on fighting and maybe it will rub off on him.