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carolkuk

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Reply with quote  #26 
Gardener and Michelle,

Beautiful.  

Gardener, you have powerful stories to tell. The steps you took to place him in bed,  how you felt through the breaking of the news, the funeral; how did you recover from the passing, how did you have the strength to place him into bed in the first instance? How do you feel now?  Ok, I can go on and on with my questions for you. I feel you are a peaceful and courageous soul.  I feel people connect with you.  And, I believe you have so much to share.  Thank you for sharing with me.  Why?  You made a difference.  Thank you for telling me not to give up.  I'm trying.  

Michelle, thank you for even responding to my post.  I know without you and your family, your dad would not know love.  We have two very different situations.  The same disease.  Or perhaps the same opportunity, to share love, in different ways but with the same heart.  As always, I wish you love.  

Chat with you soon.....Carol

michele

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Reply with quote  #27 
Thank you, Carol.

There are support groups for families dealing with this disease. If you don't have anyone offering you support, maybe you would find some comfort in a support group? It is a terrible disease and one day I hope they will find a cure. My dad is 93, but there are other elderly people who are still so sharp. He was always such a smart, capable man, to see him like this is heartbreaking.

I know you are having a tough time with your dad. Are there groups or agencies that can help you help your father? I am lucky that my husband is so supportive, but if I didn't have him, I would seek help. I am in Toronto, and there are a lot of resources and programs to help. Do you have that where you are (in the States, I assume, but I don't know where).

I have read that you are hungry. Are there programs to help? I think Susie posted some links, it might be helpful if you contacted some of those, Carol. If there is help, don't hesitate to seek it. Also, take time for yourself --- most important. I don't know what communities you have there, or belong to, but reach out for help. Also, maybe you could get information from The Alzheimer's Association - 

 https://www.alz.org 

They have message boards for caretakers, resources, etc.

As for being hungry Carol, again, reach out for help. Susie had posted some links, I would suggest you start with those. There are people and agencies and resources out there for you, but you have to seek the help.

Good luck!



Gardener

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Reply with quote  #28 
I prefer to write about lighter subjects but if relating an experience can help someone out that is good. Life is full of ups and downs and things rarely go as planned. Life probably wouldn't be all that interesting if things always worked out. Some of the hard times I went through were because of fool's pride, refusing to ask for or except help from others. I worked at another store in Spokane and a customer would come in and I would ask him "What's going on?" and his response was always "Time and the river". I didn't understand what he meant at the time but like always one person's wisdom always sounds foolish to others.
carolkuk

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Posts: 143
Reply with quote  #29 
Thank you Michelle.

I actually joined the Alz. Assoc. two times in Springfield. IL.  I visited my State Senator and State Rep.  I wore the purple sash.  With Illinois in the budget crisis it is in, funding for our families individual needs is nil.  However, I was part of the group who 'lobbied' (Alz. Assoc. Advocates), to ask that Silver Alert be a part of our State.  Silver Alert functions like Amber Alert.  Basically, if an Alz. patient wanders from home a Silver Alert is activated across the state.  I was part of our group lobbying effort and I am proud of the result.  It is a far cry from helping the working poor in Illinois, who care for family members with Alzheimer's, and frankly, other diseases. We lobby, we care for relatives and friends with Alzheimer's and other diseases, because we see the need, we see no one else is there to help 24/7/365, so person by person, family by family, we downsize our lives to take care of our loved ones.  At our own risk.  And, the risk for many of us is hunger and eventual homelessness.  Check with the Alz. Assoc.  Many of us who care for loved ones with Alz., wind up homeless.  Many of us are already hungry.  I am speaking of something that exists, yet no one can see. We don't qualify for most programs.  We are that percentage of the working poor that no one seems to understand.  We work, we make just enough as a household to not qualify.  My parents are not hungry.  I would never let that happen.  I am hungry.  I have been for a while.  That doesn't mean I don't eat anything in a day.  But, I do eat the minimum.  And, I go to bed hungry.  I will attend the Alz. Assoc., lobby efforts in the Spring in Springfield, IL. I will continue to help lobby for the current Alz. Policy.  Just know hunger is a reality within our Alz. caregiving community.  And, after meeting people who are caregivers for other long-term illnesses, there are more hungry, working adult caregivers than I could have ever imagined meeting.  So, I thank you all for your advice, your tips, links.  I'm trying to impress upon you the greater issues of hunger among the working poor.  And, the dignity.  We are educated, we have been working in various fields for decades, and brought down by an illness in circa..2017...This is a different time.  A different year.  And in 2017, we are still in the shadows.  Maybe in the future, I will be able to post adult hunger on any site, and people will know exactly what it means.  And, in my wildest dreams, I would never have to talk about hunger ever again.
carolkuk

Registered User
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Posts: 143
Reply with quote  #30 
Thank you, Gardener.

I respect your choice.  I still believe you have so much to share.  I'm listening, whatever direction you choose.

Time and the River.  With Alzheimer's time stops.  The river is dry.  Only to be filled with tears.  And, with enough tears, the river flows again.  And, time is an illusion.
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