Keep Breathing…

I’ll start this post tonight, but it is unlikely I will finish. It’s 23.16 and I really should be in bed, but as usual I am not. I’m tried, emotional exhaustion as opposed to physical exhaustion, although it’s there too.

I’m listening, and I can’t hear anything and it’s a blessing, it means all is peaceful, something that in this household has been severely lacking of late. There is no shouting, crying, cursing or stamping of feet. The Mothership is in respite and I can breathe.

A few weeks back a routine glucose check promoted an urgent trip to the hospital, where it was discovered that she has iron deficiency anaemia. They don’t know the reason and because of her level of understanding are not sure they can complete the necessary examinations. 9 hours we waited while she was topped up with both blood and iron. We hoped that perhaps that had been the reason for the decline in mood, but we were wrong and things steadily got worse.

The Fathership contacted her social worker and when she eventually returned his call a visit was arranged. They discussed carers, incontinence clinics, day care centres and medications. There was no discussion about what you do when you feel you’re at the end of your rope and have no strength left to tie a knot and hang on.

We persevered for another couple of weeks, but there was no improvement and neither of us could remember the last time there had actually been a good day. Her new favourite word became no, which she said a lot when we were trying to get her to eat and drink, a vital part of staying alive.

I’ve cried so much this last 2 – 3 months, because there really is nothing else to do when you feel there is no where else to turn. You look at the person before you and in your head you check off all the tactics that you have tried to stop the shouting and crying, and when you realise that you’ve actually reached the end of your list you think how, how the fuck am I going to deal with this person.

In sheer desperation the Fathership contacted her Doctor and outlined everything that had been going on, the lack of eating and drinking and the increase in the aggression and she took the decision to have her placed into respite for a couple of weeks in order that she could be assessed to see if perhaps there were any other underlying reasons for the decline.

I cannot explain the weight that has been lifted off our shoulders even if it is for a short time. How delighted I was to be able to sit down and watch the TV or sleep all through the night, something that I had not been able to do in the last 2 months.

It’s not been the stress free week that I hoped however, one set of worries just becomes replaced by new ones, like how is she getting on, will she kick off with the staff, will she fret for home and also, will she hate us for placing her in there in the first place. There are still things to be done, certainly a lot around the house and lets face it the cooking and cleaning never stops. I badly need to catch up on sleep, because the world is a scary place when you are suffering from a lack of it.

She’s been in for almost a week and I have not yet been to see her. I’m not sure people understand my reasoning, but in order for me to make the most of this time I have been given I need to try and distance myself, because if I go to visit and she is either upset or accusatory then it is going to take away any of the benefit that this period of peace should have.

Others have reported that she is doing well. albeit she will not eat and drink more than the minimum for the nurses either. She seems to like the company and to be honest that was a fear of mine for the last few weeks, that she was lacking the interaction with people other than myself and the Fathership.

We have big decisions to make, but I think we all know that the time is coming when we will have to choose where the best place for her to be is. We can’t seem to make her happy any more and if she needs that connection with others then perhaps she needs to be where that can be provided.

I’m trying to take one day at a time, but already thoughts of her return home are crowding my head, because when you have had that little bit of freedom and realise what life can be like, you realise it’s going to be very hard to return to how things were.

One day at a time eejit, one day at a time. Keep breathing.

(As predicted, this post took me 4 days to complete)

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41 thoughts on “Keep Breathing…

  1. Whew ! I am so pleased that you said it took four days to write this post Juls, as you said it was 23:16 hours and I was reading this at 23:14 hours and an hour ahead of you. Heck, for a few minutes I thought I was in a time warp or something. :roll:
    What I am pleased about is that you have a couple of weeks of “me” time. I know what you have been going through and I am so happy that you have a break. I cared for a friend for a year until she died of cancer. I could have walked away at any time, but didn’t, so I cared for her, not only out of a sense of duty, but there was no one else in Spain to do it. The Spanish social services said it would be at least 10 months before I could get any help from them. Learning from that experience I do know that the carer needs as much support from day one as the patient does.
    Please do make the most of this break you are having and do something out of the ordinary and memorable while you have the chance my friend. Big hug. Ralph xox <3

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  2. Oh, hon. I’ve not had this struggle, but I did see my mother through to the end of her terminal cancer. She wanted to die at home and we couldn’t do that for her, so her last few days were in the hospital. She didn’t hate us for it, and she was perfectly lucid. Most of the time, when not under heavy morphine. Mothership won’t hate you. She knows, down in there where the she that is she still is, that you can’t do it anymore on your own. You have done so, so much.

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  3. Hi Juls, firstly enjoy the respite….you have done all there is to be done and probably way beyond the call of duty…..when dealing with parents in this state I know it can be extremely difficult mainly because we have this sense of being responsible for them. A very good friend of mine had her mother go down the same path as yours is going. It was an extremely difficult time for her dad was also there and trying to deal with a wife who accused him of no end of sins the poor man would never have contemplated let alone committed. Eventually they placed her in a nursing home and like you suffered all that ‘guilt’ associated with that decision. But it was the right thing to do they knew no matter how much it hurt at the time. I think there comes a point as you say when there is not much else you as a daughter can do. You have to live, you have to survive, both you and your dad have a life you both have to lead. Its a tough business I know and when the time came for me to put my dad into a nursing home I suffered huge guilt but I knew he was in a place where was being cared for, and he was.
    Take care of you, I imagine your dad will need you very much…..plus you need to be able to get up each day and NOT look for that rope!!!

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    • Thanks for your words and I know you are right. Everything is just so all over the place right now, I want to jump up and down for joy at the fact that I have free time, but in the back of my mind I’m thinking she’s going to come back, how will I cope.

      At the end of the day we both want what’s best for her, it’s just a shame it has to be us making the decisions.

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  4. Yep. I’m going through this for the third time now with an older relative.
    Is there a support group you can sit in on, for people in a similar situation? Might be helpful to go someplace and vent with people going through the same thing…

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  5. What an impossible place you’re in…..guilt at your own life’s blood? I think you’re doing exactly the right thing not going to visit her right now. Much more important to get yourself back up on your feet and in better frame of mind. I’m hearing more and more in your posts that you and the fathership are both realizing that there is a decision to be made….hard though it may be to make that decision, it’ll be done with love and compassion and insodoing will give 2 people back their lives and perhaps even add something to the mothership’s existence at this point….better for her to be surrounded by people TRAINED for this and much less emotionally-invested so that your future time together can keep the family dynamic intact (i.e. mother/daughter – husband/wife) rather than stretch that to its limits and perhaps totally lose the good that’s still there. Sending big hugs for you Juls and am proud of you for realizing that you gotta take care of you right now!

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  6. When my father was dying I saw him as little as possible. I didn’t want my last memories of him to be tied to dying and hospitals and him not really being my father at that point. Take care of yourself, first and foremost. <3

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  7. From my experience…sometimes it’s just time to let go. Your mum is in a different place mentally and sometimes it’s best that they are also in a different place physically with similar “lost people” with people who are so caring and can put up with the hard times because it’s not so emotionally upsetting for them as they didn’t know this person when they weren’t “lost”. You’ll never lose those memories of your mum but sometimes by not letting go those beautiful memories might be superceeeded by less beautiful memories. Does that make any sense? That’s as serious as I get…I’m off to do a Sia impression now ;)

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