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how do others see us?




We just had our northern kids and grandkids here for four days. All last week I did extra jobs to make sure the house and yard looked as good as I could make it look. It was a HUGE effort. I was pretty tired by the time they came here but Oh so glad to see them. I do miss them all so much and although we see each other at least twice a year it is not the same as when they lived two suburbs away.


My daughter and son-in-law have a big job running a Salvation Army Corps in a large Queensland town/city with all its problems. Like most "churches" they have a few committed older folk and a bigger contingent of younger folk who have not yet got to the stage of really committing themselves to sacrifice some of their precious "family time" for the good of their local community. This mix means that although there appears to be plenty of people to do all the work required in a church that is both spiritual and practical it is in fact often left to the "oldies" and the officers to do most of the hands-on-work the public expects from the Salvos. And believe me in our changing social times there is far too much need for the churches to cope with.


Shirley and family had come down the coast with a camping trailer using camp grounds that were animal friendly as they also had their cat and dog with them. They had taken four nights on the 1700 miles from Cairns. They picked up the other mum-in-law and went down near the Snowy Mountains for a week then dropped her back in Sydney and came up here. It was lovely to have them with us. We had nice weather so enjoyed a family bbq, a day at the beach, a shopping day and a night out. The days just flew by as they always do when you are with people you love for such a short time.


I must admit that it was an effort to keep up appearances. I had a couple of incidents with Ray when it was a scramble to clean him up before everyone else got up in the morning. I did up his meds in our bedroom, set up all his clothes, helped him dress etc so we could go out to the living area with bright, happy faces. I think I could only keep up that effort for a short time before the cracks began to show. Ray was very good, only had a few moments when he said something silly and I could count the seconds before someone said: "Right..." and changed the subject. No nastiness or "arguments" from him thank goodness. I do want time with our family to be good times and for them to have happy memories of both of us together.


Which brings me to the question: "how do others see us?". I know our son Trev who lives here with us, sees the bad times as well as the good and probably has a clearer idea of how Ray's condition has altered and with it my ability to cope with it than the other two do. He sees me down on my knees cleaning up the mess, exhausted late at night after some of our bad days, desperately trying to keep it all together. He says that he tried to tell his sister about it but she said her Dad looked okay and she was sure I was coping okay. I am sure that IS how it looked too as we were endeavouring to make life look "normal". So should we let our families see life in the raw or should we protect that family image?


I am coping better with the thickened liquids now and have a range of containers I use to take drinks for him with me when we are going out. I didn't take anything with us on the night out as I was too flustered getting Ray and me showered, changed into clean clothes and ready to go out. But I made him a "drink" of vanilla dessert sauce and orange juice which whipped together seemed like the right consistency. It was probably WAY too high in calories and upped his sugar level but sometimes you have to improvise and compromise at the same time. And necessity is still the mother of invention.


Today I have been trying to get some shopping done and pay some overdue bills. I let things slide a bit while I concentrated on the house cleaning and the refurbishing of the wardrobe. There are only so many "spare" hours in the day and I was filling them pretty full. So at last I have the bills off my conscience again. And the fridge and freezer have some newer occupants. Anyone else find that when the medical problems crop up they take so much out of your day? And that other things like shopping for groceries seem less important and so don't get done? I guess the garden needs some attention too so I'll spend some time on that tomorrow if the weather keeps fine.


I am hoping to get a few days to catch up with letter writing etc, I seem to get way behind in that. And I'd like to have time for reading in the sun before the heat of summer comes, and sorting out my wardrobe as some of last summer's clothes definitely won't do this summer ...and...and...and..lol you see why I keep a list handy eh?



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I'm so so glad you had an enjoyable visit with your northern family. How nice for you and Ray. Your comment of how much to tell our families is an excellent one.


I think when it comes to family or even with our friends we try to maintain that all is fine when, in all reality, that may be farthest from the truth. I'm not totally sure why we tend to do this; perhaps it is an extension of denial. If the truth be told, then we believe we'll lose our standing of being strong and can do and handle anything. Unfortunately, by keeping any trials and tribulations to ourselves, it begins to snowball and we reach a point of not being able to express things how they really are to those around us for to do so is really losing "face".


There are instances in families where there is denial on the part of those outside looking in when they are faced with what is going on.


In my family, I see it from two different viewpoints. My Aunt, who is now 65, is disabled and has been in a wheelchair for close to 40 years. She has also developed emphysema and is on oxygen 24/7. Her immediate family goes through their own various stages of denial with regard to their Mom even though she is quite vocal about her needs. In their eyes, my daughter and I have no real needs. Promises are quick to be made but quite easily broken.


So...what do we do? I dunno - wish I had a suggestion. What we all do have is a safe place to retreat and vent to release some of the pressure on us.



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I get overwhelmed by just reading your todo list. I think you need to go easy on some unessential things like gardening, wardrobe cleaning & as such. I think maybe it's good idea to tell your daughter on the phone all your trials & also let her see some of things you need to do to keep strong image around. but at the same token family who is far & can't help out in anyway there is no point in burdening them with our problems. you can see I don't have magic bullet answer for you, I wish I had though.




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I think Asha has made a couple of good points. Maybe there are some things you could skip sometimes. And your daughter is a grown woman and should be able to understand that you have a lot on your plate. Give yourself a break...you do a wonderful job taking care of Ray, but you are also human and get tired. Your daughter should know that.


I have actually been amazed with the way Paul has taken on the role of caregiver. He doesn't have to do nearly as much for me, but he has had to clean up a mess or two. :blush: And we pay to have Misti come in everyday through the week to help me bathe and dress, plus do laundry. We also have a girl come in to clean the house. (I never had that done before the stroke.) All our children live a distance from us so they can't help.


Take care of yourself.



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Sue, I think your daughter should know. Keepin up "appearances" .... is pretty hard on the shoulders. Your daughter should be aware of her dads condiion, but also that you have a LOT to do and how wonderful a mother, wife and carefiver you are.


Life is not always "normal" Your daughter and son in law are in the business of "caring and understanding....


your phone chats with your daughter could be more open and undetstandding..


Do you have boy scout type groups there? maybe you could contact one, some of the boys could come help with the yard or outside work.


please take care.... you do soooo much, Bonnie

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Thanks for the support from all of you. I know it is okay to tell my daughter how hard it is for me but I know she has enough troubles poured out to her from members of the public plus she has a widowed mother-in-law who needs a lot of attention so I guess I try to put up a strong front so as not to worry her too much.


I do as much as I can independently but know that Ray and the work he generate for me is sometimes too much for one person to handle. The carers that come in and the supported Daycare he goes to helps a little. As of this month Scallywags is fortnightly so some "time off" has disappeared there. Plus his Daycare day is about to be changed as the govt "streamlines" that service to make it more cost efficient. Don't they know stability is important to the people who use the service? In carer support as in everything else it is the dollars and the bottom line that counts not the needs of the individual.



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