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well meaning people


swilkinson

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There are a lot of well meaning people in my life. They come from all walks of life and from just about every period in my life. They may be friends of long standing or more recent friends. Some are maybe more in the casual acquaintance category but in the past those have sometimes turned into friends too, so I don't as a rule categorise them. They are all friends to me.

 

I am one of those people who encourages others to voice an opinion. I do so here on my blog and in chat. I allow for people's ignorance of all of the facts and as much as their answer complies with my thoughts on the subject I am happy to say; "Sure, that is worth a try." I then consider how this will fit in with the strategies I am using and then give it a go.

 

There are people here like Annie, Babs, Sarah, Jean and a lot of others who are in similar situations to what I am. They have husbands/partners who have had multiple strokes, who's conditions have maybe been better than they are now, and who get an uncomfortable feeling when they look too far into the future. I value their advice above a lot of others as I know they know what caring is all about. Others show sympathy, encouragement, hope in what they write and I am really glad to have their comments too. Still others offer a friendship based on mutual trust and caring and that is good as well. I am very blessed by you all.

 

In the past week I have noticed that a lot of my friends, acquaintances etc in real time want to give me well meaning advice. The crux of this is often: "In order to save yourself you need to put Ray into a home. " It may be worded so sweetly and couched in flowery phrases but the bottom line is just that. This is very contrary to my feelings on the matter.

 

I do not want to put Ray into a hostel or nursing home. I want some advice on little steps to take so I will feel comfortable with the way things are and be able to cope again. I know this might be just for a short time but the longer we are together and I can keep Ray in his own home the better. I find it hard sometimes not to be angry at what the well meaning friends say. But it is their view on what they see as the problem and as long as I do think they understand at least some of the situation I need to listen and pick out the pieces of advice that I can implement.

 

A friend of long standing said to me today:"I know you don't take advice well." She is wrong, I do take advice. I look at all the angles of what needs doing and I eventually decide how I can do it. I can't see that any of us do anything different to that. Listen, learn , assimilate. Am I right here?

 

We all live in a bubble of our own making. Sometimes we park those bubbles side by side and speak to each other. We communicate in whatever way we can our thoughts, hopes, dreams and aspirations. We do it in conversation, in chat and in a more obscure way, in our blogs. I am not saying to you straight out:"I am losing it. I am going mad. Ray has to go." That might be the truth for a moment or two but the next minute after that I might say."Look, he's sleeping now, I'll put my feet up. It is okay, I can cope for now." That is the way life is, it is not like a solid Easter egg, chocolate all the way through, it is more like Forrest Gump's "box of chocolates"...

 

So I need to say to myself, let it all flow, take it easy, let time take care of your worries, keep on keeping on, take some time for yourself. You have all given me this advice at one time or another and I am really grateful for it. The wisest words are often the most trite, those sayings that seem to be overused are that way because they are wise words. Wisdom is just common sense in a more poetic form.

 

It is coming up for eight years since the first of Ray's major strokes, 19th April, 1999, the day life changed forever for me. Maybe that is why I am a bit bristly and uncomfortable with life, why I am at odds with what I say and how I feel. This too will pass.

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Sue,

 

I can't offer much more than a virtual hug :hug: and a gentle reminder that all those times that you felt like you were alone when you saw only one set of footprints in the sand, it was HE who carried you through. As long as you are here, you will never walk through this alone.

 

 

Sarah

 

 

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Sue,

 

:hug: :hug: to you dear lady. No, you are not walking alone. Even those of us who walk kinda funny are right there with you.

 

 

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Sue,

You have been a wonderful friend to me, and I want to say: Thank you. You have been my mentor, and have stood by me when I felt all alone.

 

You have had the life experiences that I have yet to have, and therefore I can't give you the kind of support I would like to. Who would I be to give advice to the sage???

 

The friendship you have given to me and others so unselfishly has made a difference in our lives. It can be felt all around the world.

 

Kristen

 

 

 

 

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((((((((((((HUGS)))))))))))) your way.... As Jean always says.

 

"caring is not for sissies" You are not alone here. You have support of other "carers" and survivors. This is a safe haven for you. You give everything you do 200%

 

You will and do make the right decesions, We all get exhausted, trying, caring.. etc. we get a little rest and the sun seems a little warmer, the day a little brighter.

 

only you will make and know when the decesions have to be made, not others outside looking in.

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Sue,

 

I just came from Associated Content where I was reading an article written by a young mother complaining about how friends and strangers alike offer her unsolicited parenting advice. This is nothing new in our lives for people to want to "help" or give their opinions. We're just at a different place with different opinions expressed but no less annoying, in those times when we can't let it roll off ours back. Most people truly are well-meaning people who are just trying to show concern, how ever misguided or inapproperate it may be.

 

One thing people don't understand about putting someone in a nursing home is how it impacts the spouse's income and ability to hold on to assets so that he/she doesnt' have to live below the poverty level or loss the home they've known for many years. At least over here in the USA that's the way it is...not sure if the is true in your country.

 

Caregivers, in my opinion, are not living in a bubble at all. We understand what we are giving up to be a hands-on caregiver and what we'd give up if we gave that care over to an instituation. Life is not always easy or fair but we all have to make our own way in the world. Part of making our way is to appreciate the fact that 'well meaning people' usually are not being nosy or critic or judgmental. They only see themselves in us and think they would do this or that differently. The hard reality of it is that when they DO get do where we're at as caregivers they, too, will find out that it's not so black and white. Ethics, emotions, strenght of character, committment and the major life style chances all get weighted up, sometimes on a daily basis, by the caregivers.

 

Jean

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Dear Sue--You are making the best decisions possible for Ray's welfare and for your (yours and Ray's) situation. You make those decisions out of love and caring.

 

The "well-meaning" people don't walk in your shoes. They don't and may never be in your particular situation. If they were in a similar situation, perhaps they would place their loved one in a nursing home.

 

When I cared for my parents, I kept them at home as long as I could. My Dad died at home. Unfortunately, I did have to place my Mother in a nursing home in the Alzheimer's wing eventually. But I kept her at home for as long as I could.

 

I feel my parents were much better off in their home. I think the environment kept them healthier for a longer period of time. One thing I learned is you do not remove a patient of dementia out of their environment (learned that when I took my Mom to Greece.....oooohhh, boy!).

 

Another thing I decided when I took on the job of caring for my parents: I decided whatever decision I made for them, I would not make myself feel guilty about. I have a lovely habit of lambasting myself. The decisions I made, I made out of love for my parents, wanting to do the best for them and based on the information I had on hand at the time.

 

Please do not worry or feel guilty about how you handle your situation or any decisions you make; do not second guess. You are the best person for Ray and you are doing your best which is far better than anyone else. Take Care. LK

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Sue,

 

I look forward to Tuesday nites and caregiver chat. You have been so thoughtful to me and others. Myself and other caregivers understand that you are doing what YOU feel is the right thing for you and for Ray. No one else can make those decisions for you. My own daughter doesn't fully agree with me keeping George at home and it has only been almost a year since his stroke. But I try to explain to her that is what I want to do, even if I do get tired and stressed and worn out. It is still what I feel is best for us. Maybe some day down the road I won't be able to care for him but for now it is what we do. :) Talk to you next Tuesday and take care down under.

 

Wendie :gleam:

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Dear Sue,

 

I'm just catching up with some blogs since there was a "glitch" for several days that involved me not being able to get onto the board as "me".

 

 

I understand exactly where you are coming from. It runs the gamet for me from, 'Ann, you really have done a great job taking care of Bill - but don't you think it's time to consider Skilled Nursing Care?' to 'Bill seems to be getting better, don't you think?' (that from his mother yesterday) Nobody else walks in our shoes. Nobody knows the impact their "suggestions" make on OUR psyche.

 

When suggestions about MY husband's care are made to me by well-meaning friends I, too, smile kindly. Now I reply that the situation is much more complex than may be viewed at first blush. As Jean says, making a move like that is a huge decision and will impact my financial situation tremendously. Right now I don't think I have the energy to pack everything up and move into a smaller apartment, go back to work in the outside world and say "good-bye" to our life together. Somehow people who aren't where we are don't understand the trauma we will experience when/if that day comes. All they can see is that our husband isn't the way he used to be. They do see all we do - even when or husband doesn't. I understand they think I've "done enough" and should now let others take over. Well, they don't see that I'm not ready yet. I made a promise to him and to me to take care of him - the same way I hope he would have taken care of me. (Of course there's no guarantee there!!)

 

Anyway, dear one - you are right when you say we understand. We are right there with you. You know I don't have any great words of wisdom - except that there will be time enough for Hawaii some day, right?

 

Love,

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