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so...how do we cope?



I have just been to a one day seminar called “How do we cope?” and I can tell you that the service providers and helping hand professionals have not a clue what we go through! It became obvious when we did a hypothetical this afternoon that giving us a few hours respite care a week is as far as they are prepared to go. It is as if they are blinkered and do not see the need people are in OR see a gaping hole and know they will never fix it.


I try to manage with the level of care I have and never complain but I know I am going to complain because I do need more time off than I get and so I get too tired. Then because I am only human it all comes tumbling out – in a big ugly vent. The person who mostly cops this is Ray as I express that I don’t want my life to go on like this etc etc. Sometimes Trev turns up at the wrong time and I tell him or I simply come on here or go onto Facebook chat and tell the next person I talk to all about my problems. It is one of those “better out than in” events but it is tiring in itself.


One man at the seminar was so angry I thought he was going to have a heart attack as he shouted: “Don’t tell me what is available tell me what you can actually do for me!” It reminded me of all those political promises we get every few years, help for carers, better access to health care, better assessment services…oh yeah? And how is that all going to be funded pray tell? The angry caregiver looks after his wife who had MS and has been doing so for 22 years. Wow, that is a lot of caregiving hours.


We finally had a BBQ last night for Mother’s Day. It was late starting and it was really cold out by the time the boys has finished BBQing. The four children, Tori, Lucas and the two little boys flashed in and out of the lighted areas with various adults calling out: “come back to where we can see you!” No harm came to any of them though they might have been a little hard to wake up for school and daycare this morning.


My daughter’s parcel arrived this afternoon, just a few little bits and pieces chosen with love. I like the framed cross-stitched picture that reads: “Housework is the crabgrass in the lawn of life”. She gave me a bag that announced it was a sewing bag, which I will use to take my knitting to craft group on Tuesdays and a pen and pencil set plus two nice cards, one from the grand children and one from her and Craig. It is good to get presents, harder to buy for an older person like me without access to a lot of things. Trev bought me a new electric kettle and a bag of potting mix, Steve complained that he didn’t know what to buy me…sigh.


Ray and I seem to be getting on okay but I notice now that his long term memory is going. It was my fault this morning that the sun shines in the window in winter when he is having his breakfast and “blinds” him. It was my fault as I was the one who bought the house. Well no, we bought a small portion of it 41 years ago and have built onto it three times and the winter sun has always come in at that angle. I finished up moving the table slightly but also thinking what a pity it is that he can no longer remember all the memories attached to our three lots of renovations and all we have been through together here. It is quite obvious now that he really has little idea of our joint past.


I saw a few people at the seminar I have been on other courses or days out with, one has promised not to lose touch with me this time but we all say that don’t we? It is sad sometimes to see faces more lined than the three years since you have seen them would explain. It is not easy being a carer for older parents, spouses, children or that odd unrelated person that somehow comes into the care of a benevolent friend. I don’t know what the answer is except: CARE< LOTS OF CARE< A LOT MORE CARE etc. And it would help to have the appropriate level of easily accessible respite too.


If the best things in life are free why is everything I do so costly?


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As I have read your blogs over the last few months I feel you are really feeling the load of cargiving an awful lot. It is difficult to keep going and going because we really are not like the Energizer Bunny. I do feel the sadness that knowing Ray has no recall of past events that seem to us so memorable. I learned yesterday that Dick has lost all memory of his trips to Alaska in the Motor Home which were amoung his most cherished events. Since Dick's aphasia has become so bad I think I assume he remembers more than he does. And of course there are those brilliant days when he seems so much more lucid. All I can say is to try to cherish every moment that you do have which I know is difficult at times. Sometimes it feels we are dragging ourselves through water or in slow motion that we feel in dreams but after a few days our perspective changes and life keeps rolling on.


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Sue, you are always in my prayers, I have said it many times before, "I don't see or know how you have made it all these years in care giver capacity! You are an amazing woman in my mind and my book! I honor you for all you do daily!


My wife has been in there with me all the way since 2004, but my condition is only a small part of what you have faced for so many more years now!


I always think of Jean and Don the same way I do you and Ray. God bless! :Clap-Hands:

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