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 Caregiving Gifts 
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Joined: Sun Oct 04, 2009 10:18 am
Posts: 276
Location: Washington State
Post Caregiving Gifts
Here are some gifts that I've received from caring for my LO with Lewy Body (as background, I'm an Engineer...caregiving is not my first strength):
I've learned patience. I used to have a screensaver that said, "patience, patience, patience" to remind me. Don't need that now.
I've learned to some extent what it is like to care for someone all the a child. Never had any kids.
I've learned how to communicate better. To be as clear as I can be. To listen better.
I've learned that mortality is not the worst thing. I do truly dangerous things sometimes. Sailing in areas with full gales where the hope of rescue is not reasonable. I think that when I can sail again I shall be fearless.
I've learned that there are truly kind people in this world who will do their utmost to help a stranger in need. I hope that I am one of them.

What have you learned? What gifts have you received?

Tue Dec 29, 2009 10:19 pm

Joined: Sun Oct 04, 2009 10:18 am
Posts: 276
Location: Washington State
Post O.K. one more gift
I thought of another one. When my husband and I are together, when neither one of us is caring for my LO, it is like we are new lovers. We have been married 28 years. But now, for the few hours that we are together, we appreciate each other. We celebrate being together. We have awesome lovemaking. We are creative. I know this is personal but let's be personal. Those of us in this discussion group are sharing this journey. This is our life.

Tue Dec 29, 2009 10:55 pm

Joined: Fri Aug 11, 2006 1:46 pm
Posts: 4811
Location: SF Bay Area (Northern CA)
Wonderful topic!

The gift I received is great contentment that I honored my father by doing the best I could in taking care of him.

Wed Dec 30, 2009 12:59 am

Joined: Sat Mar 28, 2009 6:01 pm
Posts: 101

Thank you for suggesting such a provocative and worthwhile topic: What have we gained through our caregiving experiences.

I have gained insights into dimensions of my personality that have emerged in response to dealing with my husband. I am much more complex and have a wider range of emotions that sometimes can all occur in a short timespan.

I have found that my love for my husband is very deep, and that somehow even though I have lost his companionship and support, I still love him so very much. It is that love that sustains me as I struggle with the daily ups and downs.

Yes, there are gains even as we measure our losses. Through caregiving, we are learning lessons in humanity.

Bay Area, CA

Wed Dec 30, 2009 2:39 am

Joined: Sun Oct 21, 2007 4:18 pm
Posts: 835
Location: Acton, MA
Perfect! :D It does make you think and appreciate the little things that tend to get lost in our busy days. My Gifts are:
I have been able to adjust to our "new normals" with very little effort.
I have been reminded how wonderful and supportive our girls are.
The home that we both strived to keep neat and in good repair is no
longer a priority.
On occasion, when he wants to be intimate, I do enjoy the cuddling
and try to remember....when. :wink:
If he could just remember me as a loving wife, of 47 years, and not
one who is busy running around on him, life could be good.

Thank you for making me take the time to think.

Take Care,

Wed Dec 30, 2009 10:28 am

Joined: Fri Jun 19, 2009 11:23 am
Posts: 201
Post gifts
The gift I have received from all of this is: The gift of growing love. I feel my love for him getting stronger. The faith in my Lord is getting stronger as well.
I always said, when I married my LO 52 years ago, I "thought" I loved him, but as the years went by so fast I felt my love for him grow and "knew" then a stronger kind of love.
Now I feel a different, stronger yet kind of love for him. Oh yes, I am still grieving for the man I used to have. I used to wish he didn't want to be intimate as much :roll: and now I have that wish, but glad for the memories.

Wed Dec 30, 2009 12:22 pm

Joined: Fri Jun 26, 2009 9:39 pm
Posts: 92
Thanks for this gift!! You are all so eloquent, sharing wonderfully.

I have learned to be quiet. And I love it. I think about how busy we were and now we're not. God is good and brings us to where we need to be.


Wed Dec 30, 2009 4:48 pm

Joined: Sat Oct 06, 2007 4:28 pm
Posts: 781
Location: LA
Post Wonderful topic
I can identify with almost everything said in the entries above. Recently in a lucid moment for Mr B, he reached out to me and said, "Honey, you know I never did blame you for that." I gave him a kiss and we hugged. He did not mention what it was because I knew and it had stood between us for twenty five years. Something that had puzzled and caused me grief. I learned from him that he suffered and covered it up with bravado. The Lord has been good to us through it all.


"See this lady she's 85 but she's nice", This is the way my husband, Mr B., introduced me in 2006 to the people only he knew. Death due to pneumonia. Lewy Body Dementia diagnosed post mortem at Mayo Clinic in Jacksonville Florida.

Wed Dec 30, 2009 6:19 pm

Joined: Thu Sep 10, 2009 2:29 pm
Posts: 68
Location: Marco Island, FL
Funny how you've made us think that Lewy can also be a gift. I've often thought of how much I have to learn to be the person I'd like to be--but I never realized the lessons would be so tough! I too have learned patience, probably much more than I ever had for my dear children when they were small. I've learned that love doesn't go away when times get tough, that it deepens, that I'm not a good judge of character--since some of the people I expected to be supportive and helpful aren't, and others have surprised me with their caring. I've learned that I can do more than I think I can as far as careviging. I've learned that when I thought life was hard before it wasn't, and that if I'm not on top of things my darling will suffer. I'm still learning!


"It's not what you look at that matters, it's what you see.".....Thoreau

Wed Dec 30, 2009 7:01 pm

Joined: Tue Dec 29, 2009 2:28 pm
Posts: 464
Location: Minnesota
I've learned that my mother was once a child, a very sweet child. It is a delight to get to know her.

My mother, even in dementia, has given me the gift of her strength yet again. Through all of this, she is still trying to protect her children. Though in the middle to advanced stage of LBD, she has yet to strike out or shout at us. I know she's wanted to.

I've learned what my mother and aunt lived through, first with their father's Alzheimer's and later with their mother's dementia.

I've learned that my indestructable aunts and uncles are vulnerable, worrying about how long before dementia creeps up on them.

I've been given the gift of one of those special moments, when my mother and aunt were working their way through their mother's scrapbook, both white-haired, almost identical, heads bent intently to see old pictures. I looked at my uncle and almost started crying for the sheer beauty of it.

And you, my new friends, have given me the gift of reaching out.

And you who are caring for spouses, Gerry, dorthea, AnnieN, sanfrett, Doris and others - you have shown me what it must have been like for my grandmother when she was caring for my grandfather, who had Alzheimer's. I had thought it was all misery, but you have shown me that the love still comes through. I now have a different picture of my grandfather's last years.

Thank you from the bottom of my heart.

Kate [i](Cared for Mom for years before anyone else noticed the symptoms, but the last year of her life was rough and we needed to place her in an SNF, where she passed in February 2012)[/i]

Tue Jan 05, 2010 2:19 am

Joined: Sat Jan 27, 2007 8:38 pm
Posts: 712
Location: CA
Since Jerome passed away in October, it's become more and more difficult for me to bring myself to this forum -- in many ways, the tragedy and ugliness and hardship of living with Lewy all those years is becoming a distant memory and only sweet and simple thoughts/feelings are left about the whole experience. I fear re-entering/re-living the Lewy cesspool. Yet I feel a responsibility (and yes, guilt) about all of those I've "left behind" who are still in the journey.

So with great reluctance, I dragged myself to the forums this morning, and though I usually go down the list topic by topic, post by post, it's been so long since I've been on the forums that I decided to just plunge in wherever my fingers took me.

They took me to this thread first, and what a gift it has been!!! All of your posts resonated with me -- so many changes I see in myself as a result of living in Lewyland, the deeper levels of love and communication Jerome and I shared as a result of Lewy, the people who stepped out of the shadows to take care of me these years and taught me about REAL friends, the clarity I've come to with respect to my religious faith and understanding ... all the things you've all mentioned in one way or another.

What a sweet and gentle way to re-enter the discussion to offer a helping hand to others still in the fray. You've tamped my fear about coming back to the forums. Thank you!

Renata (and Jerome-in-Heaven)

Sun Jan 17, 2010 2:21 pm

Joined: Fri Aug 11, 2006 1:46 pm
Posts: 4811
Location: SF Bay Area (Northern CA)
Best wishes to you always, whether you are here with us or not!

Sun Jan 17, 2010 5:51 pm

Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3441
Location: Vermont
Post My gift
I always thought I had just about the best dad in the world when I was growing up.
Now that his personality and everything has changed so much (and not in positive ways at all) I realize even more what a great dad he was. Many people grow up with dads who have personalities like mine has now. I was lucky to grow up with one who spent a lot of time with us and told a lot of jokes. I wish I had my dad back.....
In the past 6 months since he bacame so ill, he has thanked me 2 or 3 times for taking over all his business/financial stuff, and trying to deal with the VA to possibly get him some benefits. He even remembers once in a while to ask me if I've made any progress with the VA. Small, but moments I cherish as there are few lucid conversations nowdays.

Tue Jan 19, 2010 11:10 pm
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