Week from hell didn't get better

With the ER visits and three doctor visits, falling and dentist and that was just Charles.

My job is taking me to a different division. Most certainly because I have a sick husband but they didn't say so. Brother said "sent me to the glue factory." All in this week.

Adding up to the stress and the crying, which has stopped, the sadness is overwhelming.

I still have some pride but adding the job change to everything else made me less confident I can withstand the onslaught.

Thank you, everyone, for your many kind wishes and total understanding. My support system was there via phone but ONE person said come over for food and wine. I hadn't eaten all day.

Love,

Cuttercat

13 Replies

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  • Hi, Cuttercat: sorry to hear that things spiraled downward all week. Let's pray that, beginning right this second, you will feel positive vibes throughout your mind, body, and Spirit. And that next week is more tolerable for you and Charles. I wish I could help you in some way, but as you know, I am not leaving R for very long at the time.

    We are at the Outer Banks this week, and our time has been gloriously wonderful. We have extremely attentive family and close friends (8 of them) who have given R such amazing help as he enjoyed fishing, sight-seeing, and even venturing into the pool with help. Been really good for me too, as others have taken on watching out for him for large portions of the day. Tomorrow it's back home to the real world, and Monday is a two hour trip to see the dr in Winston Salem.

    Will be thinking of you, whispering prayers for a much better week.

  • Sorry to hear your feeling so sad, yes sometimes it would be nice if somebody said come over for wine & food & most of all, company, or even ill come over and bring wine & food,

    Xxx

  • My sister quite does that, when she knows I am down. Cooks dinner, her and husband come over, stay the night, so she helps me put S to bed. Then I get a shoulder to cry on. I would have gone under years ago, with out this sort of support.

    Lots of love

    Heady

  • Hi Cuttercat, I'm sorry you are having such a rotten time. In a previous post you said you had to make some decisions and mentioned retirement. Has that time come? Is Charles on his own when you are at work? If someone is looking after him, going to work is easier but there comes a time when he will have to be watched all the time if falls are to be avoided. I was really sad when I had to retire a year early and miss the move to the amazing new building from the 1960's monstrosity I'd worked in for 20 years. It was, however, the best thing I did. At that time C was still able to walk, with support and we were able to spend time going out for day trips and we have lots of very happy memories of that time. If I'd left retirement much longer I would have missed those good times as his condition progressed quite quickly a few months later and we were unable to do things we had done earlier. I was also more able to cope with the everyday problems that hit us. I didn't have to worry about work but had time to take up new hobbies, spend more time with my dad, sons and grandsons. The last time we were able to visit any of our sons was October 2014. I'm so pleased we made the most of the earlier years of this awful condition.

    As each new situation arrives, I say to myself, and C, what can I do to make this easier. Retirement was the first answer, then calling on different organisations for help, getting the house more user friendly and even now there are decisions to make but I know it is only I who can start the ball rolling even though final decisions are often made by outside agencies. If we burn ourselves out we won't be able to continue what we are doing so problems have to be solved before they break us totally.

    I do hope next week is better for you, better for all of us. Every day is a challenge with frustrations, sadness, etc but I pray we will all have the physical and emotional strength to cope with whatever hits us and do what we can to improve anything we can improve.

    Sending you a big hug.

    X

  • I'm in the throes of those decisions. He wants me home and has said so. I have help now and he goes to day care so things are stable but he is failing fast. You know how it is.

    I would be taking early retirement with no pension and when his social security ends I'll truly be in a bad way but with the job situation I may have to.

    My life will close up, friends will be few and far between but I know I have ALL OF YOU to help me.

    Prayers are always welcome. Thanks so much.

    Cuttercat

  • Friends don't have to be few and far between. I have more now than prior to PSP because I joined classes to go to when C is being looked after. I've already got 2 Christmas lunches booked which I'll take C to if the carer can't come. The only thing that stops me going out is if he is really ill which isn't often. I invite friends round for morning coffee, lunch, afternoon tea or an evening takeaway. It's important we don't isolate ourselves. Laughter with friends can make everything seem bearable.

    X

  • The sermon today was on contentment. Preacher : "I will be content when I am happy" but he contended that Happiness is the bi-product of contentment....therefore the opposite(?) (he did not use the word, 'opposite' ) is true: "I will be happy when i am content" using true introspection, service, embracing ones life and truly leaning on the Lord is the path that leads to contentment.....I really heard that sermon today.....Just like I did your message today. Thank you

    AVB

  • Oh for that one person! That's what I call real support.

    Cattercat, life is very hard, especially at the point you now find yourselves in. S and I have gone past the giving up everything stage. In some ways it's better, less far to fall, when you crash, but equally there are very few highs in our lives.

    PSP only ever takes, you have no control on what it wants out of your life today. You just have to try and get control of things that YOU can. S is struggling to swallow now, is down to puréed only meals. I have been at my wits end, not knowing how to get on top of this. I now buy ready made puréed meals, my time, that was spent cooking, puréeing, clearing up the mess afterwards, is now spent "relatively" calmly feeding S. Another stressful situation, bought under control, well for today at least!!!

    Sit down, make a cup of coffee and think where are my stress points? Why can't I cope with that? What would make the difference? Am I fighting a losing battle with this? Is it time to give in to that? There are lots of things that I swore I would NEVER give into, but looking back, it's laughable and quite honestly, pathetic. All that time wasted,precious moments ruined, for what?

    We all know our loved ones lives are short, please try to make the most of your time left, as stress free as you can. The big things you can't control, but there are lots of tiny things, you can. Keeping things you know Charles needs, close by, so you are not constantly hunting for them. If he wears glasses, get another pair, because we all know they are always in the wrong room! I use to be quite an untidy person, now the house has to have everything in the right place, I can't cope otherwise. In other places, my standards have had to drop, but that's fine.

    Top of your list should be, buy some ready made meals, so you don't go another day without eating!!!

    Sending a very large hug, to add to that wonderful thing called hindsight!!!

    Lots of love

    Heady

  • Very sage advice. We are also in pureed meals. I made crockpot cabbage style soup and pureed it. He was happy. We still laugh, hug, and enjoy each other's company but since I have to work it is just so little time since he's ready for bed when I get home. You know how it is.

    Not making big decisions right now, just taking one day at a time.

    The stress is bad but I have always been a tidy person, and have done "everything" there is to do to prepare. From POA's, house, will, funerals, etc. It's the day to day and the unknown that makes it hard.

    Plus the isolation. I never thought we'd be far away from family but alas.

    Love you for thinking for me right now, I truly need it.

    Much love,

    Cuttercat

  • So sorry that things have brought you to this point. Praying that you be will given the strength to carry on. You know you can rely on us to listen and support you even though we are not physical there.

    Lots of love, Nanny857 xx

  • A very difficult position to find yourselves in, I'm guessing you can't concentrate fully when at work as always fearful that Charles will fall and seriously himself and yet being in a normal working environment is probably something you would like to hold onto for as long as possible. Throwing you into a new working environment whilst dealing with PSP seems a step too far, I hope it works out for you whatever road you have to tread.

    Love and hugs

    Kate xxx

  • You "got" the picture. Thanks for saying what my heart is thinking.

    We are managing for the time being and Charles and I are enjoying each other more each day.

    Cuttercat

  • How heart warming that you and Charles can enjoy being together still. Being together means more than anything. You are still making memories which will sustain you in times to come.

    I'm sorry to read how frightening your future looks. I hope you can find some support but we are all here, any way.

    Love and a big hug, Jean xx

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