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Old 01-14-2010, 11:06 AM   #1
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Smile Top 10 Do and Don't List for Caring for Caregivers

Thanks for all of your input on the previous thread. Here are my results based upon your comments and my personal experience. Hope they can help someone help a caregiver.

Let me know if I missed something major:

Caring for Caregivers Ė Do

1. Do take time.
Time is the best gift you can give a caregiver. Whether it is 5 minutes, or 2 hours, just knowing that someone cared enough to call or drop by is HUGE emotional support. It was such a joy to have friends just drop by and sit and talk for a few minutes.

2. Do learn a little bit about the disease the caregiver is dealing with.
This will be a great help in knowing how you can help.

3. Do acknowledge the stuggle they are going through.
Emotionally, physically, etc.

4. Do pray for the caregiver.
And let them know that you are praying. Better yet, call or drop by and pray with them in person.

5. Do offer to take the caregiverís child (or whoever) somewhere.
This was a huge relief for me, when my friends/neighbors would offer to take my daughter to karate, shopping, movie. Just knowing that she had a chance to get away and be normal for a little while was a blessing. I have a couple of women who have been such a huge blessing in this, and to this day, She is well-adjusted and happy because of them.

6. Do bring a sense of humor.
People have no idea how good it feels to laugh when you are dealing with an intense caregiving situation.

7. Do bring food.
And it need not be anything elaborate. Just not having to worry about what to fix for dinner once or twice a week is such a relief. The wonderful folks with the church's Manna Meals ministry are truely a blessing. Most of them Iíd never even met before, but they were a blessing.

8. Do continue to ask.
It need not be every day, or every week. Just knowing that people care really helps you get through the day.

9. Do offer to let the caregiver get away for a bit of respite care.
Caregiving is a mentally and physically exhausting job. Just an hour away from the responsibility is such a gift.

10. Do allow the caregiver Grace.
We are not perfect. And most of us are doing the best we can everyday. Sure, weíll make mistakes along the way, but there are no ďHow-ToĒ books for caregiving. Itís a learn-as-you-go experience.

Caring for Caregivers Ė Donít

1. Donít be afraid to ask the caregiver how they are doing.
The stress of caregiving takes a huge emotional and physical toll, and caregivers are the ones suffering the most Ė
dementia patients themselves are, most likely, not aware of their illness.

2. Donít over-promise deeds of support early-on in the disease, only to let it fade away as things progress.
Itís easy to have good intentions at the beginning. It is much better to have no expectations from the get-go.

3. Donít just ask a third party how the caregiver is doing.
I call this passive ministering. Several times Iíve had people tell me that Billy Bob asked about me. I wish Billy Bob would have called me, Iíd have loved to visit for a few minutes.

4. Donít say ďif thereís anything I can do, let me knowĒ if you donít plan to follow it up with calls periodically to see what the needs are.
This is probably the most over-used phrase that I have heard in the last two years, and from the caregiver perspective, it sounds very insincere. Donít put an additional ďthing to doĒ on them... caregivers are working 24/7 just trying to keep life under control Ė needs crop up and must be dealt with at a momentís notice. They donít think about what someone else can do for them Ė they just take care of the issue as it arises. And the needs change on a daily basis. The biggest blessings I had were when someone would call and say they want to do something today Ė what were my needs for the moment?

5. Donít say ďnothingĒ. I think most people just donít know what to say, so they donít say anything at all Ė
which leads the caregiver to assume that no one cares. Any words of encouragement are most welcome.

6. Donít take a chance meeting in a public place as your opportunity to ask the caregiver how INSERT PATIENTís NAME HERE is doing.
Talking across the front of a crowded store in front of strangers is not the venue to talk about such private and
personal things. It is extremely uncomfortable for the caregiver, and they wonít be able to tell you really how things are Ė this may come off to you as lack of communication on their part. If you are truely interested, please catch them when there is no one around and express your concern, theyíll be much more willing to open up just a bit.

7. Donít ask / expect the caregiver to take on additional responsibility outside of what they are already dealing with. Their life is a 24/7 road race already, and it only gets worse as the disease progresses.

8. Donít ask the caregiver if (after spouse dies) they will get married again.
Believe me, that is the last thing on their mind. And, really, itís nobodyís business. Even now that Iíve been a true widower for almost 10 months, that is still a very inappropriate question. Once I have figured it out for myself, and when I think ití is someoneís business, Iíll tell them about my plans for the future. Right now, I have a daughter to raise.

9. Donít make critical suggestions.
If you think you can do things in a better way, go for it. Iím sure the caregiver would love the help.

10. Donít use a gathering of friends/family to speculate about the caregiverís personal life (or lack thereof) / issues.
This is gossiping. If you are really concerned, contact the caregiver personally. They would love to have someone to talk with who is truely concerned with their well being.

 
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Old 01-14-2010, 11:21 AM   #2
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Re: Top 10 Do and Don't List for Caring for Caregivers

Great work. Ken. This should be given to everyone Anyone can suddenly be a caregiver .. it will happen at some tme to everyone ...

Love,
Martha

 
Old 01-14-2010, 12:46 PM   #3
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Re: Top 10 Do and Don't List for Caring for Caregivers

WOW... you about covered it Ken. Every person alive should learn that list and act upon it. Then caregivers would actually have support that is helpful and necessary. I especially like the Don't to Critical suggestions. When you are up to your neck in alligators you don't need somebody telling you to pay attention to a fish in the ocean or the alligator is not that big.

If you don't mind I am going to copy and keep this!

Love, deb

 
Old 01-14-2010, 12:49 PM   #4
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Re: Top 10 Do and Don't List for Caring for Caregivers

Please.

Copy it, share it, send it to whoever needs it. That's why I wanted to do it. Thanks for your input.

Love. K

 
Old 01-15-2010, 06:38 PM   #5
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Re: Top 10 Do and Don't List for Caring for Caregivers

Ken,
This is wonderful advice!!!! It is just so important for caregivers to have support. I am right now seeing the effects on a person who has had none. My uncle who looked after my grandmother as her sole caregiver, is here visiting with us for a week. My grandma died 9 months ago. I saw my uncle one month after she died, and now he is here again. Oddly, he looked physically better the first time I saw him. He is suffering, suffering from loneliness. Even after the extremely difficult (putting it so mildly) episode of caring for my grandmother....I think his mental state was better back then than now. Why? Well, I believe he can accept that she's gone, and no longer suffering. But now he is suffering from depression, and its effecting his health, big time. If he was given the types of support you mentioned in your post, he'd be so much better off. He never had time to himself, to keep in touch with friends....to keep him mind "alive" with something other than "dementia".....and its almost like he's forgotten how to "live". He gave everything he had to her.....and it's like he was holding everything in while she was alive in order to keep on going....but now there's no point...and he is just miserable. It is Sooooo important to keep some sort of normality while caring for someone....I cannot say that enough....you need something "on the other side".....something to pull you through and bring you back to "life" again......
As Martha says "God Bless All Caregivers".......

Love, Caroline xo

 
Old 01-16-2010, 07:02 AM   #6
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Re: Top 10 Do and Don't List for Caring for Caregivers

Caroline. THanks for your prop on the list. I just hope it will help people understand the life of a care giver.

I completely understand where your uncle is in his life. Being a care giver consumes your life. One does become isolated from the outside world. When you are used to being alone, you're not quite sure how to reconnect once the care giving is over. It's been almost 10 months for me, and I still am having this issue.

I'm slowly connecting, but honestly, I ask myself, "why do I want to reconnect with people who I've not heard a word from in 2 years"? Maybe I just start making new friends.

If your uncle is depressed all the time, make sure he's gone to see someone, maybe needs an antidepressant for a while. I've been off mine now for 6 months or so, and there are days when I'm really down, but more that are good. Now that the holidays are over, I'm much better. However, today would have been our 28th anniversary, so I'm not sure how I'll do today... but good so far.

Best of luck to your uncle. K

 
Old 01-16-2010, 05:29 PM   #7
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Re: Top 10 Do and Don't List for Caring for Caregivers

Hi Ken,
Just reading your message now....I hope the day went okay for you, I"m sure it was not an easy one..........sending hugs your way!!!

My uncle wont take anti-depressants....we've suggested, but he refuses. He had given them to my grandma and they had horrible side effects. We keep trying to explain to him that they will not have the same effects on him as a 95 year old woman with dementia, but so far, no luck in convincing. I totally hear what you're saying about the reconnecting thing, and you know...new friends can be really refreshing. If nothing else, this illness shows you who your true friends and family are!! Glad to hear you're off the anti-depressants - sometimes we just need some help with what life deals us, in whatever form it may be. I admire that you reached out for help..it takes courage to help pick yourself up from such a huge loss.

Nice to see you regularly on the board!!!

Love, Caroline

 
Old 01-16-2010, 05:48 PM   #8
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Re: Top 10 Do and Don't List for Caring for Caregivers

An anniversary is hard, much ike the first Christmas or birthday etc. Take your time, Ken. It is OK to feel 'down' at such times. But think of your life as getting better now, day by day. I pray for you as your horizons begin to widen. Who knows what may come? You are a bleesing to everyone on this Board, and I am sure you are a blessing to people in your life, new or old.

Love,

Martha

 
Old 01-16-2010, 11:42 PM   #9
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Re: Top 10 Do and Don't List for Caring for Caregivers

I hope on this anniversary you remembered the good years and the blessings ken. Each passing day will help so you are one more step into the rest of your life

Love, deb

 
Old 01-17-2010, 05:01 AM   #10
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Re: Top 10 Do and Don't List for Caring for Caregivers

Thanks for your encouragement. It was actually a pretty good day. Other than being rainy and gray. But I went out to eat with friends, so that helped a lot.

Deb, I like what you said about it being the next step into the rest of my life.

Y'all have a great day. I'll catch up with you later. K

 
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