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Joined: Tue Aug 12, 2008 9:54 pm
Posts: 4
Location: San Antonio, Texas
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Hello,

I am new to your group. My husband has mixed dementia, Lewy Bodies being primary and Alzheimer's secondary. He is a wonderful man and I love him with all of my heart!!

I have been caring for him for 24 hours a day, 7 days a week with no help. I finally hired college students to help 20 hours a week so I would have a break. I usually spend the time I have available paying bills, running our household, etc.

When my husband was first diagnosed, he was still in very early stages and could do most things. He made a list of everyplace he wanted to go, everything he wanted to do and everyone he wanted to see. We spent the next year or so of our lives doing the things on his list.

With a mixed dementia, he has declined rapidly. Last year at this time, he was functional and still worked a booth at a trade show for a product we have. This year, he is currently in the hospital, but does not know where he is, what city he is in , etc. The changes over the past year have been hard to keep up with.

I am having such a hard time with family and friends, they just do not understand and do not wish to take the time to understand. They do not help me, but they do criticize me and work against me.

I find myself tired, alone, distressed, defensive, angry and hurt by the unkindness of others. I am also afraid of my husband's children. They have done many illegal, manipulative and hurtful things in the past and recently.

I also love my husband so much and want more than anything to make his life good.

I find great comfort in your site and reading of other's experience along this journey.

Any help or advice you can offer me will be very much appreciated.

Thank you.


Wed Feb 11, 2009 10:33 am
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Joined: Sat Jan 03, 2009 2:59 pm
Posts: 1978
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Colleen,
Welcome to the LBDA Forums, I know this is a place to share and receive information, By educating yourself as much as you can and becoming a good advocate is the way you can help your husband, none of us can change the outcome of this disease but we can make things better for them, I am sure you will receive many answers to you valid questions but the one important thing is you are no longer alone in this disease, you may want to think about joining the online spouse only support group, many issues are discussed that pertain to spouses only.
I wish you well!

http://groups.yahoo.com/group/LBD_caringspouses/

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Irene Selak


Wed Feb 11, 2009 11:14 am
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Joined: Fri Aug 11, 2006 1:46 pm
Posts: 4811
Location: SF Bay Area (Northern CA)
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How disappointing about your family and so-called friends. You might give them the new LBDA brochure for the newly-diagnosed patient and his/her family.


Wed Feb 11, 2009 12:26 pm
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Joined: Wed Oct 08, 2008 10:30 pm
Posts: 976
Location: Henderson, Nv.
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Hello Colleen,

Glad to meet you and happy you are here but sorry it is under this circumstance. You are not alone here as others can relate to your situation. The information and support you will receive are invaluable.

Sad for you that your hubby is failing and you are having to deal with the cruelties that go with these dementia diseases but glad you had the chance to fullfil his "wish list." Your great love for him is very evident and wonderful. :)

Boy, can I relate to your saga. We also did trade shows, etc. Both of us were executives for other companies and then had our own products/company for 20 years. Worked together 24/7...now we work 24/7 on his disease which is a sad, cruel one...PD/LBD.

The stepkids issue was the same here...dollar signs instead of eyeballs. :lol: But of course they have not visited their dad in years! Not one bit of help.

If you haven't already done so, go to an elderly law attorney. It will be the best money you can spend and can prevent heartache for you in the future with these family members. You must protect yourself and your LO.

My LO goes through terrible times and says things which I know he doesn't mean but it still hurts and alienates family members and friends. It leaves me alone trying to deal with LBD by myself. Many are understanding for a while but many have deserted us. Their loss! Thank goodness a few good friends have stuck it out with us!

"Alone, defensive, distressed, angry, hurtful, maipulative, etc. says it all. If these people could only walk a mile in our shoes they would relate to what we are going through. This is such a difficult, sad, cruel journey we are on and instead of helping, many make it harder on us.

This site is a great place to vent and it will make you feel better. Others will have stories that will make you laugh and forget for the moment how stressed out you are. The relief is welcome.

Stay strong, be as positive as possible and take care of yourself. You will be in my prayers.

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Dianne C.


Wed Feb 11, 2009 1:13 pm
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Joined: Sat Jan 27, 2007 8:38 pm
Posts: 712
Location: CA
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Ditto on everything Dianne C. said -- and then some! Yes, I deal with the step-spawn issue as well. Do you have your financial and legal affairs in order -- e.g. living trust, durable power of attorney, medical power of attorney, advanced directive, etc.? Do see an elder law attorney if you haven't already. Having these things in place will make you feel much more secure about what lies ahead, especially where the steps are concerned.

My sister-in-law continues to think I exaggerate Jerome's condition. Last week he had no clue he was in our own home, and he is convinced his sister (same one) is married to someone named Cliff that she dated 50 years ago (not!).

In addition to the great information and advice on this forum, it's wonderful to have a whole load of people who KNOW you're not crazy, and really appreciate the daily challenges you face.

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Renata (and Jerome-in-Heaven)


Thu Feb 12, 2009 11:31 pm
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Joined: Wed Oct 08, 2008 10:30 pm
Posts: 976
Location: Henderson, Nv.
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"Step-spawn" ??? lol :lol: You are just toooooo funny!

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Dianne C.


Thu Feb 12, 2009 11:39 pm
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