landscape
Active member
- Joined
- Jan 14, 2007
- Messages
- 84
- Reason
- CALS
- Diagnosis
- 07/2006
- Country
- CA
- State
- Western Provinces
- City
- Erehwon
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.
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.