My father recently died after fighting Multiple Myeloma and Hemochromatosis. Within 7 weeks of his death my aunt and uncle also died, but of different types of cancer. Needless to say, the past couple years have not been good. My mother was the main caretaker for my father and my sister and I would stay 3-4 days at a time at the house to help. Nobody understands what it is truly like to take care of a loved one that is so ill until you actually live it. It is so hard on everyone!!

Luckily, my parents have some great friends who did some fantastic things to help us out. Some would take my dad to dr's appts, others cooked meals, others would just visit, some would drop off videos for my dad, etc. I would never have thought to do some of the things people did, so I thought I would begin a collection of nice things that people can do for the caregiver or the ill person that really show you care. I would love to hear what others have experienced. What have people done for you that was really helpful or what did they do for the ill individual?

I hope that you get this message. I see it has been a couple months since you posted it.

NO one has done one thing to help me. My husbands family has no care what happens to him. He was always in a wheelchair and self sufficient. But when he contracted mono a few years ago it was downhill and post polio took over too.

One time, my husbands arthritis crippled him so much in his spine that the ambulance was called and the doctors said his scoliois was so bad that he may have to spend the rest of his life in bed. He has not completely gotten there yet.
At that time, I called a aunt he had who lives seven miles away and was always saying..If you need something honey, call Aunt Eva.

Well I did and all I said to her was "If you are ever in this area, not today or tomorrow, anytime even in a month, could you just drop something by no matter how small in a covered dish or bread or something to save me a trip to the store..anything!"

She replied this way! "I NEVER get over your way, I could never do that".

How do you think THAT made me feel. I knew she did not drive. But, she goes out every single day and she has other people from her church (who live in my town) to pick her up for lunch dates, doctor pedicure appts. And I found out she even had lunch around the block with the Italian American Club a few weeks later.

I was devastated. And this is the way it is with everyone. She is a christian too. His family could care less. So anyway, you asked. People admire me and all I can say is...one day their turn will come around and see if I help them out. For certain they will be calling experienced me.

My husband has Hemochromatosis, as you said your father did. He also has Hepatitis C. By the time he was diagnosed with the Iron Overload, he had a 97% saturation of iron in his vital organs, especially the liver. He went for a twice weekly phlebotomy regularly for eighteen months. I worked, earning as much money in two days at a nurses registry, as most people make in a week, so I was able to care for my husband during the other five days. A few years later I became very ill, and was diagnosed with Congenital Common Variable Immune Deficiency Disease. I was near death when I began to receive Immune Globulin IV's every three to four weeks. We have been members of two wonderful neighborhood churches. Our Christian family has made us dinners whenever we needed them to, taken us to and from the doctor, even if the doctor was at a University forty miles away. They have replaced the leaking roof on our house, to the tune of $7,000.00. They painted our house, and cleaned up the whole yard, which was a huge job! We hadn't been well enough to take care of it for years. They replaced our screened in porch when termites had eaten through the wooden beams that supported the house. A friend, not affiliated with the church, had the inside of our house painted, and put new Burber carpet down. Another friend brought her whole family, and they cooked and delivered the most wonderful tasting holiday dinners. The city that we live in delivered Christmas gifts for our fifteen year old daughter. A friend of means, sent money for a couple of years, every month to cover the cost of our medicine, and other medical needs. The money that she and her husband sent also paid for a weekly cleaning by a maid, and for someone to run our errands for us. Our church delivers a package of food every month, that includes fresh fruit, fresh vegetables, wonderful meat and desserts. Friends send money in the form of a money order or put cash in an envelope, without signing their names. I could go on forever about how we have been blessed! The Lord must have prompted each of these wonderful people to do these acts of kindness.

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What doesn't overcome us, makes us stronger!

Thank you so much for your e-mails. I made notes from both of the postings and encourage others to think of generous things people have done for those that are ill or are taking care of an ill person. Until you go through it, you have know idea how much a meal, or money, or handywork, or whatever it is - means!!

I noticed these posts because of the mention of hemochromatosis. my husband was just diagnosed with this and after years of being my caregiver we are now reversing roles. I have had diabetes for a few years, meniere's disease, and all of this started about 12 years ago when I have a bout of endemetrial hyperplasia and had to have a few months of not fun hormone treatments. ever since then my entire system has been in chaos.

anyway the smallest things that people just take for granted can mean so much. hubby works full time, lots of overtime, but when his treatment for the iron condition begins he will have to cut back. he takes care of all the house stuff and I have a nephew who lives closeby that used to come over and do the yardwork, car repairs, you name it, but he graduates high school this month and goes off to college soon. I don't know who I will find to help me do everything.

even things like laundry and watering the garden can make a huge difference when you are not up to the task.

just my two cents.
Colleen in chicago

Thanks Colleen, it sounds like your world has been turned upside down for awhile, but it sounds like you are a very strong woman. I appreciate your "two cents" regarding what people can do for those taking care of others while they are ill.

For the 3 of you who have replied to my posting, I would ask that as you progress through these journeys, if a thought like "Oh, I wish I had someone to do that" ever occurs to you - you visit this board and post what it is that you need. I would really appreciate it. Thanks, Lori

I am 41 and took care of my parents most of my life. My dad was sick with kidney falure since I was 11. My mom and I became best friends and we dealt with it together. A few years ago my mom got sick, It was so much harder for me to deal with by myself. Not that I was by myself I had a husband and two boys. But I still felt like I was by myself, even though they were helpful. I have two sisters who basicly where there at there convienence. So you are right no one knows what the caregiver goes through.
My sugestion to anyone who wants to help a care giver its time we need.
I would have loved for anyone to have givin me a break.
someone to come over and let me go out, for a bit. Stay with mom and talk to her, listen to what she had to say. So much of her life came out in the last few months that no one got the plesure of hearing..except for me. The emotional stain on the care giver is so great that you need to get away, clear the webs of everything medical...even just for a moment, stroll through a store, look through the library. But this is very hard to do if you feel you have a "babysitter" with your loved one. Try to be that interested friend, thats what I could have used.
I know that is hard to do, but now i also miss that person...because now mom has been gone for 2 years now and I have few to share her last months with. What made her laugh, cry, smile......
good luck

Thanks beebauser, I found that time was what my mom really needed as well. Some of the suggestions I have even heard is offer to visit with the ill individual on a Sat. night or a Sunday morning so that a caregiver can go church. You are right about the "babysitter" versus the interested friend or family member. Thanks for your input and if you can think of anything else, let me know.

It's been a while since anyone posted a message on here for you, so I thought I'd contribute a little. I have been housebound for 2 years now .. I am married , have two grown children, but no parents on either side to help,my siblings live miles away,or have their own busy lives.. I get out occassionally when I can,when my body will work!!; but the one thing I believe is so important to any one trapped at home is to just get a PHONE CALL from friends or an E/MAIL to let them know they're not forgotten! I really love it when a friend calls, it makes my day!.. I don't have a lot of friends, as I worked at home before becoming h/bound,but once I'm better , I'll be making up for it!.. will join lots of groups etc.! My husbands' friends are really nice and ask after me . Everyone is so nice and concerned , but they all work and are very busy, which I appreciate..so not much chance to help with anything .. this has made me very aware of the needs of others I may know who may get sick in the future.. I will make an effort to give them a call ..cheer them up..write a letter.. let them know they're thought of . There are other things can be done of course, but a phone call 'aint much to ask for eh?.. At least I have my computer and that is my outlet to the world at present!! So I hope this may help some who read this to think .. just even a phone call .. to both the ill person and to the Caregiver.. give some of your time to chat.. let them get things off their chest .. be a good friend and give some of your time .. TIME costs nothing ?.. Love Belle NZ

Thanks Belle. It is amazing how the simplest thing like a phone call or e-mail makes a difference. I have found that people just don't know what to say when they call or e-mail. Do you have any suggestions for things to say other than how do you feel? I wish you the best in your recovery and I hope that some people recognize how important it is to stay in touch with those that are ill/housebound.

Hi there Lorie416 http://www.healthboards.com/ubb/smile.gif
Sorry it took so long to get back to you..
I have been thinking WHAT can we say to others apart from how do they feel?.. That's a hard one as it really depends on the actual circumstances happening to those people..
If it's elderly people whom I've had a lot to do with.. I would tend to get them remembering the old Memories; or the people whom we mutually knew from the past , as old people never forget the old days, unless of course they have an Alzheimers type illness.
If it's a younger person, maybe ask them about their hobbies, favourite TV show,friends, Singer or Music.. Movies that are on they may like to see..Take them some interesting magazines .. Offer to teach them a Craft .. like Cross Stitch..Play some games of Cards.. You could even get a book out of Library to get ideas of interesting things to talk about..or do?.
As I said it all depends on the particular circumstance..
If it is a Caregiver, after asking how they feel , maybe you could ask if they are planning on having a break/ or have had a break from taking care of the ill person.. ? What would they like to do,.. how are they going to do it.. Make a suggestion of something good that may be available to go and see, do.. etc.. Ask if they have someone in mind to take their place..??
Apart from that , offer a LISTENING EAR.. more important than ANYTHING.. if they just want to talk ..
I can't think of anything else except ..
what about making a little gift ..a craft..a pot of jam.. some baking .. taking a book you've read .. some magazines..A video, offer to go out with them to a movie if they've no one else.. for a cuppa , Take them to a Library if they like reading , give them some TIME out!.. Ask what small thing might bug them that they can't do themselves and try to find a resolution..
Oh so many little things could be done..
So Laurie, does that help?..

I did start another post on Caregivers Topic page just above your message.. called it
"Help a Caregiver-Cheer them up-Time Costs nothing!" and I mentioned you and your page, so others would look at your's too..
Got some nice replies on it as well. So I think I've done my wee bit to help?

I hope you are feeling ok yourself Lorie, and you have some support too..?
You could leave me a message on my page if you like and let me know how you are ?..
You're important TOO you know!!
Well must go.. Take Care.. Belle NZ xxx

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A Friend!

Hi Belle,
You gave some great suggestions of not only things to say, but things to do. You certainly have helped me!! I will have to check out your page another time, as I am 37 1/2 weeks pregnant and about to give birth any day, so my time on the computer has been limited. I will check back when I am feeling a bit more comfortable. Thanks, Lori

Hi Lorie416
Just a wee message to wish you well and all the best for that wee http://www.healthboards.com/ubb/angel.gif baby you have coming!
I do hope you have someone to be your "Caregiver" when it's all over, to pamper YOU a little bit?
Kind Regards.. Belle http://www.healthboards.com/ubb/smile.gif xxx

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A Friend!