Exhausted, Worried and Trapped by Caring

[Stacey]

I have been so tired the past week I feel like I have lead weights under my eyes.

My husband has been very poorly, worse than I have ever seen him, but it is par for the course with COPD. My sister's immune system has packed up and she is in critical care with a relapse of viral encephalitis and now she has spinal meningitis. The encephalitis nearly killed her five years ago and left her with brain damage (no sense of smell, no navigation ability, and short term memory problems) and worst of all, chronic pain which can only be controlled by morphine.

The docs have no idea why my sister had a relapse, but she is improving and mentally there appears to be no damage. She lives in New York and I have not seen her since December. I cannot even talk to her because there is no phone in critical care. When I first learned she was ill I told my husband I wanted to see her. Not only is it torture not being near her, but she has been taking care of all the admin involved for my father, his home and carers. My father has been in and out of hospital in the past six months and my sister has managed all of that. She goes way overboard and have told her so ... but she bit my head off. I think all of the stress contributed to her getting sick now.

I wake up very early every morning and cannot go back to sleep. On the one hand I have my husband not wanting to eat, coughing violently and telling me he, "wishes it was all over." When he heard my sister was improving all he said was, "good, you don't have to go now."" Have to go? I WANT to go. Me screaming at him followed. He refuses to go in the Hospice because he cannot do what he does at home - smoke and sip whisky all day and night. At the same time, he is extremely ill, very dependent and I would have to pay a carer to stay with him all the time because he is refusing the hospice.

So, I have my husband with not long to live, my sister with life-threatening illnesses and my 93 year old father with demetia and a failing body. Heck, I am not surprised that I am stressed, but I have never felt so trapped by caring. I know once I can speak to my sister I will feel better, but there is no assurance that her state of health will improve. It really just hit me that there is no way I can ever get to her quickly and it has me distressed. I actually found myself more than once with the thought that I wish my husband would hurry up and die . And of course, that distresses me as well. Argghhh!

[Myrtle]

Nothing I say will help, I know what it's like to want to be somewhere but not be able to go
((((((((((((((((((((((((((((((((((((((hug)))))))))))))))))))))))))))))))))))))))))))))

[susieq]

Stacey - wish I could help or offer you some comfort, but just know that we're all thinking of you and sending up a prayer or two.

(((((((((hugs))))))))))

[Nilla]

Stacey words are in-adequate at times like this but I give great hugs

((((((((((Stacey)))))))))))

[marie66]

Hi stacey and big ((((hugs)))!
Just a thought, instead of the hospice, which your husband is really against, could you possibly arrange for care workers to come to him at home and let you get some respite?

That's what I do as OH would never agree to go into a residential place.
We use a Direct Payment scheme which allows us to cover respite in this way.
Maybe somebody from social services could help sort something - I know, I know - they're a bit hit and miss!
Sometimes they are totally useless but other times they can help with these sort of issues!

marie x

[Alix8]

Stacey, my thoughts are with you. More than once i have just wanted to be away, just go, and maybe not come back. Sending you massive (((hugs)))

[entity]

Hello Stacey,

I'm lost for words and feel helpless hearing your story.

Thinking of you Stacey, never feel alone because the carers on this site are wonderful people who are hear for you in your time of need.

[Caring_Mind]

Oh Stacey - I echo what others have said. These are the times when I just want to physically help - and I can't! I hope that it will strengthen you knowing that so many people are thinking of you. Sending you love and (((((((hugs)))))))) xx

[Eun]

Does your Hospice supply a "Hospice at Home" service whereby the staff will come to your house rather than the cared for person going to the Hospice?

Our Hospice does this but it is a service we have not used as Robert prefers to go to the Children's Hospice at the same time as his mates are going but I have heard it's a very good service.

Eun

[Stacey]

Thanks everyone for "listening" to me and your support.

It's a very distressful situation and the reality is that I have to accept that my place is with my husband. He has been very ill the past week and although I could get a live in carer I would be very worried about him. Our local hospice is great and honestly so is everyone else involved in my husband's care. I thought about asking the palliative care nurse and district nurse to stop by if I was away, but it is the rest of the time I would be worried about. Plus, when any medical staff asks my husband how he is he just says, "fine." It does not matter how bad he's been, he's always "fine" or "the same." It's me and my big mouth most of the time that gets him what he needs.

My sister has a terrific husband, daughter, and is very close to sister-and brother-in-laws. Her husband and in laws are very helpful. She knows I love her. It's only me that can help my husband and I know that if I was in my husband's situation I would not want to be cared for by a stranger.

The good news is that my sister is making more progress in the right direction. My brother-in-law Tom says she might be released later this week or during the weekend. She will be far from well, but she wants to go home now and is brushing her hair. Her sister-in-law is a nurse and said that when women in hospital put on lipstick, then you know they will be released. Tom has taken over handling the carers who look after my father and told me not to worry about him.

So ... like everything else I will just have to get through this as best as I can.