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landscape

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Here's my list of Do’s and Don’ts for Friends of the Caregiver

1. Bless you for NOT giving me advice unless I’ve asked for it. (OK, I’ve been guilty of advice-giving in my time but I’ve learned a lot in these last two years!) Be my friend and not my health care professional, I’ve got plenty of professionals to whom I can turn.

2. I do appreciate those wonderful people who shovel my sidewalk when it snows! You never have to ask if I’d like it done! But check with me about other jobs. What may look like work to you might be recreation for me. I love my garden and I love being outside so although my lawn looked a little shaggy this summer I enjoyed doing the mowing when I got around to it.

3. Don’t tell me you feel sorry for the ”terrible job” I have to do. That’s not how I see it. To paraphrase someone else’s words, “Care-giving is the last gift of love”. We’ve been married close to 45 years and everything I do for my PALS is done with love. I’m fortunate to have a partner who is so grateful – and tells me so. It makes this road such an easy one in so many ways. I’m a sole caregiver but I have the skills and the physical ability to provide care and I have wonderful support from the ALS Clinic & Society. Does this mean that I’m never bone-tired, that I’m never sad, that I’m not afraid? No, no and no. It just means that I take pride in providing care.

4. Thank you for giving me unconditional support. I don't share emotion easily but if I trust you, I'll cry on your shoulder when I need to.

5. Don’t urge me to ‘get away’. We are content in each other’s company and know that we do not have it for long. I do have someone who comes in for four hours once a week but when I’m away I’m always anxious to be back home again. When I need help I promise I’ll ask you for it!

6. If you have a choice, write or e-mail me or rather than phone me. Cards and letters are always welcome and if you e-mail me I can choose when to read it. If you phone I may be in the middle of looking after my PALS and I won’t be able to talk to you. My PALS sleeps a lot these days and if we’ve had a rough night I may sleep during the day too.

7. Let me know before you visit and I’ll let you know whether or not it’s a convenient time. Be aware that he eats very little now and what he does eat is limited in terms of texture. Don’t be offended if we don’t eat what you have brought--it's best to ask first. If I suggest a time limit for your visit, please don't overstay your welcome.

8. Don’t ask “Has he given up?” when I tell you my PALS talks about death. We are moving on towards acceptance and it’s a healthy and necessary stage.

9. Please keep in contact with me. Even if you don’t know what to say, tell me that you are thinking about us. Let me know what is happening in your world. Your messages mean a great deal to me.

10. Flowers and plants make wonderful gifts but please remember that we have pets and some plants are toxic to animals.
 

CindyM

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Thank you. We need more hints like this!
 

swmn

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Very Well said

As a Friend of a PALS, CALS who relayed such a message to a group of colleagues I'd like to add -That friends need to be aware of "holiday Teats" that are given in kindness, but the PALS is probably trying to concentrate on quality calories. If everyone brings treats to them, it is far too much and they would rather not have those temptations.

Be sure to offer choices if you plan to drop off a dinner, they may have something they would prefer over something else, besides the dietary concerns- and you want them to enjoy it.

Remember that CALS need a hug too, and they will have tough days that they may seem indifferent - but they appreciate your support - Talking about it isn't always necessary - a hug says it all.
 

Gina

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landscape!What a great post ...I didnt even realize how much less stressfull my life would be untill i read your rules.!Somedays my phone just rings off the hook and it just drives me crazy and they all want to speak to me because my husband is a man of few words.Another thing that really annoys me is when familly or friends tell me how guilty or ashamed they are that they havent been around and then want my sympathy so that they can feel better about themselves....I hope i dont sound bitter but i just dont think it is my job to take care of thier feelings.Often times when my husband takes a turn for the worst they will phone me and ask i think they should all come or is it that serious.Iget really frustrated and angry at that because he was given 2 weeks to a month a yr.ago and everyday to me feels like it could be the last.I also resent comments like" oh no you havent given up hope!" Or another one ive got is "Dont be a martyr"I guess what im trying to say is thankyou for putting words to my feelings and maybe i will make a list to give to some of those people to ease the stress!.........thanks so much ...Gina
 

Al

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Lee (wife) should have had that list to put in our Christmas cards this year. Great stuff.
AL.
 

swmn

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Ooops

.... be aware of "holiday Teats" that are given in kindness,....:oops:

OK - am I the only one who doesnt see typo's until after I hit SEND?:mrgreen:
Sorry - ment Holiday TREATS! - no offense...
 

myooshka

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I didn'nt even realize your error untill you pointed it out. Gave me a good laugh!:-D
 

CindyM

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One thing that my sister does when somebody gives well-meaning but misguided advice, is to look them straight in the eye and say with complete deadpan, "thanks, I never thought of that." She can pull it off because she says it without a hint of sarcasm, but it does stop the "martyr" comments and such dead in their tracks.
 
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beaner1

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What a great list - I'm going to print it off and hand out to everyone! I get so sick and tired of all the "free advice" - I know everyone (well, most everyone) means well but I find I have less and less patience with people - could be the average of 9.5 hours a day I spend caregiving (another great post!), plus work full-time etc., etc. If only everyone that comes to visit would be mindful of time spent - my husband gets tired so quickly! Al, great idea about sending it with the Christmas cards - if only I was doing some!
Beaner
 

Gina

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Hey landscape seems that everwhere i go today on this forum you are thier to help!Just wanted to tell you that i sent out an email to my husbands sister yesterday to set some limits with the visits and told her a little about our schedule....if you can call it that because it seems everyday something comes up that i have to take care of and throws it off again.I explained to her as you said in your post please email if you can ...and If glen has had a rough night then we may sleep in the aft.which we almost always do!She had phoned on the wknd.and left a message saying that they wanted to drop in but we must be out somewhere.I actually felt like replying to her that "Yes indeed we were out dancing in the streets"but i didnt i kept my cool and decided it was time for them to get a quick reality check AGAIN!...so off went the email and i was almost afraid that his familly would not recieve it well as i asked her to forward to all who had email access.Her response came this morn.and whew they seemed to recieve it well and again offer to help in any way possible and even thanked me for doing such a good job of caretaking.! in short i want to say thankyou to you for helping guide me through this.....o.k now i am just procrastinating over the phone calls i must make!......Gina
 

landscape

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CALS
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Erehwon
Good for you, Gina! Glad to be of help!
 
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