Welcome to My Caregiver Blog

My daughter has a chromosome deletion, but able to walk, talk, etc. She is almost 19 years old, but in her mind she is more like 6. I will have to care for her for the rest of her life, since her thinking is very limited. I feel often I have one head and 2 brains. That over tires me. I have a cragiver, spending 4 hrs a week with my girl. She is a grandmother and good to my daughter, but made comments I do not appreciate. She has 3 granddaughters-4,3&1 years old. Few times she told me her daughter has no help with her girls, referring I have it too good. How can I deal with this lady and not loose her services? Thank you!

Hi Suzanne, My name is Chris Capobianco and I own and operate Home Instead Senior Care in Bergen County New Jersey. I applaud your blog and commitment to helping family caregiver deal with the challenges of caring for a loved one. Like you, I see first hand the struggled many individuals face in managing the care needs of an elderly parent or grandparent. My heart goes out to them. “Care giver” burn out is increasing and many of my clients family have few places to turn for help. I’m glad someone else is there to help. I will certainly pass on your blog to the families of my clients. Regards, Chris Capobianco Home Instead Senior Care 57 Cedar Lane Teaneck, NJ 07666 201-833-1175

I am so thankful for what you are doing. I am caring for the love of my life who has a progressive form of Multiple Sclerosis. Finally, after about 20 years of symptoms, one doctor called it and it was a relief. Now that we have a support group in Pensacola, we are also focusing periodically on caregivers/partners. Your website is encouraging to me. Thank you for being there. I am trying to get my MS chapter in Jacksonville, FL involved in this program as so many of the people in this are have this illness and the public does not realize the volume of people affected by it.

I am 35 y/o who has been taking care of my mother since 1995 but FT for the last 4 years, it is very difficult to be everything to everybody, (I have a 11 y/o daughter that I have full custody of), its very frustrating especially when I also have to work full time and maintain an income to provide for everyone. Much less not enough time in the day to really feel like you've given enough to everyone, including yourself. I'm looking to chnage careers just so I can maybe do everything for everyone a little less stressed d/t lack of time in a day. My moms health started with her heart at 49, by 52 she had to have dialysis, a kidney transplant a second triple bypass,breast cancer, and now at only 60 she's on oxygen 24/7 and only 1/3 of her heart works. And the school is still fighting with giving her her disability! How do you find the time for everything & everyone and still maintain calmness & sanity for yourself? I'm good, but stressed some days. Deanna

Just want to give a very positive response to Suzanne Mintz's Family Caregiving Blog. Is there a way to subscribe??

I would like to know if a ny caregiver out there has found a way to earn a living from home that doesn't involve alot of computer technology. We have lived on savings for several years but now it's gone. I can find no one in our community who is willing to me work from home. The general thought here seems to be "yyou chose to not work. Why should we who g oout and work hard every day support you?" This statement came from an executive at our local LOA office! Please tell me how I can find help. I'm starting to think I should start my own non-profit to help with financial support of the other caregivers in my area but then I guess no one would contribute. I am amazed a the lack of empathy in the non- caregiving community. Thanks for being there.

I am writing to invite family and professional caregivers to visit CareShare, a free internet forum where you can ask, share, inform...and even gripe. Encourage others; help yourself.

I started CareShare(http://forums.delphiforums.com/careshare) shortly after my mother was diagnosed with Alzheimer's disease. This was back in the "stone age", when cell phones were just for making phone calls, and a blackberry was only a fruit. These days so many caregivers have the capability to log on and reach out to one another, anytime from anywhere. Why not use that technology to offer or receive support!

We are a great resource for one another. We know what its like to worry about a loved one's declining health while juggling work and other family responsibilities. So who better to turn to than other caregivers who can relate to these experiences. Besides, an objective ear, an open heart, and some common sense can go a long way. Caregiving is tough enough; why go through it alone?
And as I'm sure you know all too well, caregiving is rarely 9-5. Frankly, I've done some of my best worrying around 3am. Maybe its not a convenient time to call a friend for support, but its as good time as any to post a message.

Cellphones may have changed over the years, but caregiving issues remain the same. I hope that people will visit CareShare, start a conversation, join a discussion, and know they are not alone.
If you have any questions, feel free to contact me at
http://www.healthcentral.com/caregiver/c/99/2443/caregiver-blog/comment/
Thanks so much for your time,
Audrey Guggenheim

I want you to know about Journey Through Alzheimer's- a internet based tv program that can be viewed 24/7. The website link is www.intimetv.com/ medical/jta.cfm. This resource is invaluable. It is a great resource for caregivers and healthcare professionals. This weekly program will take you through a journey of understanding the disease, living with the disease, and research creating hope for the future. It is very unique in that it offers a manifold of perspectives on Alzheimer's disease- that of nationally recognized experts, physicians, researchers, family caregivers, and individuals living with the disease. Enjoy!"

Caregiving is and will continue to be one of our most challenging issues that will ultimately face us all. With millions of people currently acting as a caregiver in some capacity, and millions more to be added over the coming years, what is needed most is resources.

 

It's not always up to the family. Sometimes they simply need a break to enjoy a few moments alone with other family members and friends. Caregiving isn't something any of us set out for - we're thrown into it. Just remember to always take time for yourself, even if it is just for a few moments.

Suzanne, for the past few months I have scoured the internet looking for information on family caregivers, trying to find out what I should expect in my upcoming role as caregiver.  My 81 year old god-sister had a stroke in 2005 and had been living with my daughter in PA.  My daughter had her husband and two tweeners to help her with caregiving.  On July 2 we moved my "sister" to GA to live with me and my husband.

 

I started a blog (http://caregiversjournal.50andup.info) to chronicle our transition to caregivers and also to give and accept help to and from others.  I have bookmarked your blog and will check back often.

 

Also, is there any information here on finding a doctor for elderly patients?

I am the primary caregiver for my father.  Dad has primary progressive multiple sclerosis.  This is a journey.  I look forwad to reading more from you and continuing with my own blog.