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Thursday 13th



Today has been a day of frustration. I feel as if I am walking in glue and not getting very far. I know we all have days like this but why is it happening to ME!!!!


Ray's new medication is giving him diarrhoea. He is supposed to settle down "soon" so the pharmacist told me. It is an "initial reaction". It is also a nuisance as I did laundry every day this week! Luckily the weather is warmer now and it has been fine with a nice afternoon breeze to waft through the clothes. I bring the sheets in ready to go straight back on the bed. So to Ruth and all those caregivers I have given advice to on such issues I finally understand, truly I do!


My respite provider rang me yesterday afternoon while I was gardening. By the time I rang her back she had left the office. Another woman rang me today to say my respite care in December which is only a week starting 8th December has been cancelled! WHAT? HOW COME? WHO IS DOING THIS TO ME? ETC. I finished up in a flood of tears imagining Ray still having the present difficulties and me coping without respite till heaven only knows when. I care for Ray the best I can and will do so as long as I can but honestly I need my little breaks so PLEASE....


Ray's care provider rang me to say she can't provide the two hours extra care for Ray tomorrow so I would just get an extra hour. I have a lot of business to take care of as well as the visit to Mum so I was hoping for five hours off and now I just have four. I guess I will do most of what I need to do. It is the shortness of available time that leads to me rushing decisions and making the wrong ones. And that, as most caregivers will tell you, is what leads to frustration. A caregiver never gets all the time he/she needs to do all the chores that need doing. It is a never-ending story and another reason for a caregiver finally putting his/her loved one into full time care.


I have been leaving messages about Camp Breakaway as Ray was supposed to be there Tuesday to Friday next week. The Camp he and I went to was for Carers, this is his usual Frail Aged Camp where he will see a lot of the people he usually goes with. His booking had not been confirmed. And again I missed a call and found a message saying he is not booked in! OH DEAR! more floods of tears. Luckily at that point the person I had contacted first rang back to say she had passed the message on to another worker and Ray WILL be included in the Camp so someone will come out to do the paperwork on Monday...PHEW!!


The respite care provider just rang back to say she is working on moving someone else who is having respite to another room so Ray CAN have his week. But that is just maybe until it is confirmed. Another cliff-hanger! No wonder my fingers are sore from hanging onto this cliff. I just hope there is a safety net down below in case I fall! I certainly feel like letting it all go right now. I doubt all these agency workers know what havoc they cause in our land-locked lives.


I try not to be a "fair weather caregiver" as I've known some people who are. They are happy looking after whoever is the recipient of their care until the first hurdle comes into view and then it is all too much for them and they collapse and someone else has to take over. I try to battle on and fight through whatever is bugging me right now. Mostly I do okay and within a few days life goes back to normal again. But some issues like the incontinence keeps re-appearing to make my life miserable. I say I choose to stay and look after Ray as I wake up each morning. I'll try to go on making that same choice day after day. I was never raised to be a quitter.


So maybe a cup of coffee, a chat with a friend on the phone for half an hour or maybe an hour reading a book will help my day to come right again. I will worry about tomorrow tomorrow Today I will just trust that life will come out with the good days outnumbering the bad days and I will be able, with some help, to cope with whatever lies ahead.


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hey Sue:


you are strong woman. I would have quit long time back. life is tough sometimes but you are in my thoughts and prayers to get through this difficult days quickly & get all your respite break to be able to take care love of your life.




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You are one of the strongest gals I know of. I hope you do have a Wonder Woman outfit for everyday of the week so you don't need t do extra laundry than you already are. Hope Ray adjusts to his new medication and the diarrhea is eliminated sooner rather than later.


Hang in there dear. There needs to be a caregiver poster designed showing a caregiver "hanging in there".

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Sue you are amazing.... so please put your right hand on your left shoulder and your left hand on your right shoulder ... now squeeze... this is a huge big hug from me.. I know it is an extra expense, or don't know if you could get them medically covered, could you use some (we call them Chux pads) they are blue plastic on one side and soft absorbent tissue on the other. they come in a few sizes.. maybe you could put some under wherever Ray sits for now.


Also maybe you could phone the Dr and see if Ray could take some imodium (an anti-diarrhea) med along with the new med for a few weeks. Can he have more cheese or foods that may help firm up his stool. like bannanas, rice, toast a bit on the dark side.. here they call it BRAT diet for diarrhea. bannanas, rice, apple and toast.


I will keep good thoughts that the respite care comes thru.. for you as well as ray.


warm hugs, bonnie




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Dear Sue,


I'm so sorry you are in a bad place right now. Just remember, we only do this for a day at a time. Yes, we have to plan for future dates, but we don't have to live in those plans. The toileting issue is the one thing that can send me over the edge. I hate that I can't seem to maintain. I don't express my feelings though and I know that isn't good either. I just think how awful it must be for him. And there's Bill, just as patient as you could ever imagine someone being.


I think the reason he won't go to his respite time is that he was afraid of an accident. Of course, now he doesn't qualify for that respite because of incontinence.


I will sure send some prayer for grace for you right now.


Love to you and Ray, Ann and Bill

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