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Joined: Tue Aug 24, 2010 1:45 pm
Posts: 35
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Hi,
My name is Kathy,62, and my husband is Tom,63. We live in Durham, NC where Tom was diagnosed 4 yrs. ago. He is in excellent health, physically, so it's a little difficult to determine what stage of LBD he is in. My problem is a lack of information on caregiving for people his age. Most programs are geared to the elderly who are also dealing with age related problems or other diseases. I've followed this site for sometime now and have found many helpful hints. I'm looking forward to joining the forum and maybe hearing from some of the younger sufferers and their caregivers about where to look for help so Tom can fit in. Thanks for making this website available to us all.

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Kathy, 63, wife & caregiver of Tom, 64 dx 2007 (later stage) lives in dementia care facility in Durham,NC


Sun Apr 24, 2011 11:33 am
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Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3124
Location: Vermont
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Welcome, Kathy and I'm so sorry that your relatively young husband is suffering from LBD. When you have specific questions about care, meds, daily living, etc., if you post them in the topic area that fits the best you are more likely to get responses from people, as it seems not everyone looks at the intros. and responds.
Do you belong to a local dementia suport group? If not, and there is one available, that may be a big help to you too. One of the local ones here also has a group of couples that spun off. That smaller group gets together pretty regularly and while the LOs who have LBD get together, the spouse caregivers get together to support one another. There are several couples in their 50's and 60's in that group. (a friend of mine and her husband belong to that one)
Best wishes as you navigate this journey together. Lynn

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Lynn, daughter of 89 year old dad dx with possiblity of LBD, CBD, PSP, FTD, ALS, Vascular Dementia, AD, etc., died Nov. 30, 2010 after living in ALF for 18 months.


Sun Apr 24, 2011 12:05 pm
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Joined: Fri Aug 11, 2006 1:46 pm
Posts: 4811
Location: SF Bay Area (Northern CA)
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Kathy,

Many in our local support group who have family members in their 50s and early 60s say the same thing about the lack of info. In fact, many of the spouses don't like the term "caregiver" at this stage and prefer the term "care partner." (Siblings or adult children don't seem to mind the term "caregiver.")

For these families, I encourage a few things. First, it's great if the person with LBD can join a local EOAD (early onset Alzheimer's Disease) support group. Second, it's great if the person with LBD can be in email contact with others who are young dealing with LBD. (You can meet a few of them here on the Forum.) Third, it's great if the person with LBD and the caregiver can join a YOPD (young onset Parkinson's Disease) support group. Locally, I attend a YOPD support group meeting probably eight times a year and find the group to be welcoming of anyone who wants to attend.

If you like the MD who did the diagnosing, you might offer his/her name. People are always looking for good MDs.

Robin


Sun Apr 24, 2011 12:24 pm
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Joined: Mon Feb 21, 2011 9:55 pm
Posts: 355
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Welcome, Kathy, you have come to the right place for help and support. Best of luck, Ger x

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cared for Dad who passed away on January 28th 2013 R.I.P.


Sun Apr 24, 2011 12:43 pm
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Joined: Sat Jan 03, 2009 2:59 pm
Posts: 1978
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Kathy,
Welcome to the LBDA forums, glad you decided to join us and sorry for your need even more so that you are both young but we have many here that are in your age group and a few LBD'ers who are younger.

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Irene Selak


Sun Apr 24, 2011 1:52 pm
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Joined: Fri Dec 31, 2010 3:07 pm
Posts: 1039
Location: Minnesota
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Welcome, Kathy.
My husband is 19 years older than I am. While his is not "early onset" dementia, I began my caregiving career relatively young, at 58. It has often occurred to me that this has been an advantage. I can see why older couples need to rely more on help from their children. It takes a lot of energy and stamina and resourcefulness and resiliency to deal with this role. I think these traits tend to diminish somewhat as we age. I don't mean they go away, just that I find them less robust in myself than they were ten years ago, and I expect that trend will continue.

Kathy I am truly sorry you have had to take on this role at all, at any age. May your relative youth as a caregiver serve you well!

With hugs,
Jeanne

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Jeanne, 68 cared for husband Coy, 86. RBD for 30+ years; LDB since 2003, Coy at home, in early stage, until death in 2012


Sun Apr 24, 2011 4:16 pm
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