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coping day to day



Lately I have been fending off people who tell me it is time to put Ray into care. Largely it is because they like me and want me to survive being a caregiver. I know what they mean about the chances being loaded against the caregiver and the posibility that the caregiver will die first. A lot of caregivers do here. And those who outlive their care recipient often don't go on to live a good life as their health finally breaks down from the stress and strain.


I'll go on looking after Ray for a while yet, with maybe three breaks this year as I can afford to fund them. I used to save money each year to go on holidays, now we don


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You know Sue,


One thing that would help you help Ray would be a person that could come in say at 7pm to 3am, sorta like a nurses shift at a hospital. You could get some sleep for 5 nights at least. Now the cost of this service would be the problem. People can say put your spouse in a facility but they are not in that situation. It's very hard to live without your spouse when you have been together mostly all your lives.


I know now from experience as a survivor I could not be without my wife near by unless it was absolutely no way I could handle her condition or afford in house help. It was hard on me being downstairs in a hospital bed when I first came home unable to walk and she slept upstairs in our bedroom.


One of our church member's husband was in a regular nursing home, she paid a nurse who wasn't satisfied being there working and caring for several people 6 days a week to come work for her taking care of him 5 days a week for the same rate she was paid at the facility.


She is able to pay because of his income alone. Not everybody could afford that arrangement. We just can't pay out money we don't have. I'm wishing the best for you and Ray. I admire your love for your husband and I feel my wife is the same as you. One day at a time is all we can ask for in this world these days


Take care Sue!

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I know how hard this is for you. I have those same feelings myself. When I end up cleaning up and showering and remaking the bed at 2AM. I am not a happy camper. I have had the wait in the bathroom for it to come experience. I hate that at 2AM and 3AM and 4AM in the morning. William always says that I sound angry. I know that i do. I am so tired. Luckily that doesn't happen every night.


You know all of the statistics on caregivers giving too much. But, it is so hard not to.



I will keep you in my prayers as always.



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Okay young lady .... 2 lemon meringue pies coming right up. ( MY very favorite too...)


I am not sure about your health care over there, but Fred has an idea.. Maybe you could have someone come in.. even a few nights a week possibly a nursing student or a health aid . I am sure it would be hard to sleep through someone cleaning and showering Ray.. you would wake up... and help.. so I know this thought.. may be easier said or thought of than what would actually happen.


It is hard to run on low energy alone.. let alone run on low energy and be Susie sunshine while cleaning up poop. As to easier clean up methods.. I think you do most of it now


The plastic matteress pad. the bottom sheet.. one or 2 sheets folded and put across the bed horizontally, a throw away under pad.. we call them Chux here. and pull up's, or an adult diaper. but then that may frustrate Ray when he does get up to go.


Have you made a list of foods he has eaten during the day..... and see if there is any pattern to the "accident's" certain fruit... or whole grains maybe giving him more rice ?


Keeping you in my thoughts and always sending Hus to you both, Love, Bonnie


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I usually don't bake but I will learn to bake for you and make that lemon pie for you and also ask Bonnie to bake too for bakeup. I know with all this incontinence you got enough lemons for pie. I admire your strength, love and courage to go on caregiving for Ray even when its so difficult sometimes. Though he defiffeintely is getting better care at home. Fred has great idea.


sending you lot of hugs.




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Sue: Bonnie had excellent suggestions. We also have pads that the individual can sleep on - waist to knees, slightly stronger than a Chux-I use one under the bottom sheet and one on the bottom sheet. We are doing laundry daily and this will cut down on some of it. I got them at our medical supply store. One other suggestion in regards to the falls, have your considered bed rails? They fit on any bed, under the top mattress. Again the medical supply store. I had to purchase mine - $60.00 for a queen size bed-but possible you could rent. We also have a place here where we can get used equipment (a disabled vet, god bless him) really cheap. The deal is you return the equipment when you no longer need it and they ask you donate any equipment that you own when you no longer need it and they will give you back your money and some for the stuff that wasn't theirs. Friends have suggested Ebay or perhaps a local flea market. Rather than a shower, consider a bed bath and deal with a complete shower in the morning if the accident isn't too extensive. I too agree Ray is getting the best care with you. I can't bake but send you hugs and prayers.

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We've been through the blow-outs before. It does always seem worse at night. I have learned to lessen my expectations. These days Dick sleeps on a hospital bed with a plastic mattress. I just have the one sheet on it then cover that with disposible pads that are big enough to catch any splatter. Dick sleeps in pull-ups so that eliminates PJ bottoms. If we have a problem at night I try to take care of it at bed-side. I keep disposible wipes on hand and plenty of trash bags. Usually I can get by without having to do any laundry or shower at night. I have also learned not to give certain foods to Dick. Another thing that works (but is not popular with Dick) is that regular diapers seem to hold more.


Getting enough sleep must be a priority. If you cannot get enough sleep you begin burning at both ends and in the middle. Then even the little things seem large. And of course our health spirals down as well.


Of course Ray is getting the best care at home. It is wearying when well intentioned friend think they know what is in your best interest. When the time comes you will know it. Do as my daughter always tells me to do, just smile and nod!

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