Care and the cared

The cared and the carer

My husband and I hit crisis time last night.

There are times when the cared and the carer forget to communicate. We just went on in our usual way.

I sometimes forget that having to look after me was not to the fore in our minds when we married 10yrs ago.

It came as a shock to both of us when I was diagnosed with Parkinson’s Disease.

Initially it was a relief to both of us as terminal conditions had been flying around in our heads.

Yes, Parkinson’s is not terminal but degenerative. However it does, indirectly, in many cases shorten one’s life expectancy. This can be due to the long-term effect of the medication or the high risk of falling as an example.

We set out our plan as to how I would manage and how hubbie would help. We have went along with the same plan for the last 5yrs and it seemed to be working fine, however my condition had deteriorated and we had not considered a change in the way we do things.

One of the major issues for us is the inconsistencies in my condition (the fact that we do not know from day-to-day or minute to minute what sort of day I am going to have).

My husband is in one way pleased when I am having a pretty good day and can get more done.Yet, at the same time, it’s very frustrating for him. This is because he has to be on standby 24/7 as I can go from coping to unable to do things in a very short space of time.

I got annoyed when I came home from my daughter-in-laws, who lives just around the corner, to find the house empty. Having to phone to see if he was at the club was bad enough but as usual was told he wouldn’t be long and finally had to phone, as I was unable to prepare the tea, and needed him home.

Resentment was beginning to raise its head. Naturally he resented the fact that, even though I was having a good day, I still needed to know where he was.

I know I only wanted to be aware of his location in case of emergency, but his lack of thought to leaving me a note as to where he had gone upset me.

With hindsight I should have phoned only if I had needed him, as I was pretty sure he was at the club.

Pretty sure, I knew he was there! His port in a storm, his sanctuary, unfortunately it had become his home from home and too much alcohol was taking its toll on our relationship.

We both let rip that night and ended up sleeping apart (myself in a local hotel), promising to talk in the morning.

We came to an understanding, but things are delicately balanced at the moment, it is not easy to get used to having to rely on a carer and it certainly is not easy for a partner to take on the role of carer.

I am equally responsible for the situation we are in. I have let my hubbie go to the club on far to many occasions without saying that I was concerned about his going so often.

It is much easier to just go with the flow rather than rock the boat but in the long run the situation has always got to be resolved and with leaving it the angry boils away inside and as happened last night instead of just having a talk it blow up into a full blown fight.

I hope we can work everything out. We have to remember what we said years ago, that if we are unhappy about something, talk.

Here’s to communicating.

5 Replies

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  • Well done for leaving your comments on this site, very brave.

    I see the problem from the other end of the telescope, as a carer. Talking is the way forward, but there are resources for carers who would find them useful, just as there are for you both as cared and cared for.

    Keep talking! Even couples with no real challenges in life don't do enough of it.

  • We, too, married ten years ago, I coming from another 32-year stable relationship, he coming from a series of failed relationships. I was the one who wanted to bring him comfort and care, yet my diagnosis with Parkinson's Disease only a year into our marriage put him into the caregiver position. I felt so guilty and disappointed and cheated! I am very frustrated when I'm unable to "carry my load" of household responsibilities and he overextends himself to compensate. I rebel when he suggests that I get more sleep or not do something that I really want to do and might feel capable of doing at the time. I want to be strong and independent again, and I worry that he will tire of caring for me. Communication is indeed the key, frequent and honest communication. He has backed off from telling me what I "should" do, and I have tried to be less critical of myself for circumstances beyond my control. I also try to be aware that he is trying to help me in the best way he knows how. Neither of us anticipated having to honor the "in sickness and in health" clause of our marriage vows so early in our relationship, but my condition is what it is, and we're having to learn not to let it define who we are and how our relationship functions. We're gradually growing around it.

  • Yesterday I overheard wife saying to my uncle's wife. " You don't have to be obligated to your hubbie like I'm to tony!!!

    I'm still trying to figure it out,, am I too demanding? and It came to me wife is getting tire!

  • Antonio_Montolio, I am new to the group and I was reading some of the questions and answers. Yours touched me and I was sad that no one responed to your post. So I thought I would. I hope things are better now since this post was dated Nov 2011. I am my hubby's care giver. 24-7. It is a hard job but I can't think of anywhere else I want to be. It also does get tiring but I remind myself how tiring it is for my husband... more so than what I am going through.So I go on. I hope your wife is still there for you. God be with you both and give you His Grace to undrstanding and love and patience. God bless you!!

  • People afflicted with Parkinson's look at things from a different point of view. The World changes. There is anger. Guilt. Fear. Goals are modified. Compensations are made. A humbling of egos takes place. An appreciation of friendships. People learn what true love is. And then there is hope that love will conquer all.

    Let there be peace!

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