Wednesday, January 14, 2015

A video about my mom

For anyone who doesn't know, my mom has Early Onset Alzheimer's.

She's 59, and she'll likely die within the next few years.

It's one of the most devastating diseases I've ever seen.

It's really difficult for us, as her children, to explain to people just how horrific this disease is. It's also difficult to know how to grieve the loss.

I write poetry and transcribe her journals. My sister Maquel writes a blog. My other sister Jenni creates photo montages and slideshows. My brother Chris writes songs on his guitar, and also lives with my dad and her to help take care of her.

My youngest brother, Chad, has been staying with me since Christmas. He has had a really hard time with her illness since getting home from his LDS mission in Tennessee--she changed a lot in those two years, and it really rocked him. He has spent a lot of hours--over the course of months--compiling a video that showcases what happened to her during his two year mission. He has done this to help himself cope with the grief he is feeling, and to feel more empowered in the face of this devastating tragedy. The video highlights the severity of the changes that happened to my mom during those two years, and tries to capture a least a part of the loss we all feel.

While it's a little bit difficult to watch, I hope you take a few minutes to view his video and come to understand more about the nature of this disease and how it is affecting my family. (And the fact that you're supporting Chad by watching means a lot too--thank you. Also, Chad links in the video to a gofundme campaign he set up to help my dad--who was forced to retire early to take care of her--with her astronomical medical expenses.)


29 comments:

  1. So beautiful. It says a lot about her spirit that, even when everything is breaking down, she chooses to smile and laugh. A beautiful person.

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  2. I'm not sure I'm ready to watch the video yet but I wanted to send a note of support to you and your family. It has been 6 years since my father-in-law died after a 12 year battle with Alzheimer's disease and we still hurt from the pain of his suffering for so many years. It truly is a cruel and tragic disease that touches not only the patient but all those who love them, as well. I pray you and your family feel peace and comfort during this most difficult time and I pray for your strength and courage to persevere the many trials associated with this disease.

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    1. I've been trying to watch your video but haven't Ben able to! Why?

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  3. Josh,
    What a sweet yet heartbreaking video. It made me cry. Your mom is a lovely woman and she was always so nice and welcoming to me anytime I came over to their house with you and Laurel. Chad really is a mini you :-) Welcome home from your mission Chad.
    Emilia Sue ;-)

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  4. So heartbreaking! I read Still Alice last year, about a woman in a similar situation. One striking element of that book was how she feared the deterioration of her faculties as the disease began its course, yet how she didn't mind so much after it happened, because she didn't know what she didn't know and could enjoy being childlike again. It still is hard to see someone else go through that . . . perhaps more difficult than experiencing it one's self.

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  5. God bless you and your family in dealing with this devastating disease. It's a very long and drawn out process of grieving, I know from experience.
    God certainly blessed her in giving her this family, you are very wonderful indeed. Momiss

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  6. I watched my grandpa slowly die from alzheimer's. Even though his wasn't early onset, he was gone so fast. Only about 7 years from us noticing symptoms. Sending love to your family as you continue to grieve the woman, the mother, you have lost.

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  7. I just sat at my computer watching this, crying, my heart going out to your family. What a devastating thing to have to watch and experience. Thanks for the video, for helping the rest of us be aware of this - you never know which family it will be in.

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  8. I am so sorry your family has to endure watching your mom slowly go away. She looks like an absolutely lovely woman. I have to say, the thing that touched me most about the video was your dad's care of her. What a beautiful example of selfless love.

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  9. http://www.telegraph.co.uk/news/science/science-news/11280504/Has-Stanford-University-found-a-cure-for-Alzheimers-disease.html
    Josh, there is hope, this is an article that I read today.

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  10. So tragic, Josh. Alzheimers' and Huntingtons' are two of the most tragic diseases there are.Peace to you all.
    - Karen

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  11. I cried through this whole thing. I knew your mom just before things started getting really bad. She used to take walks by herself until a neighbor had to call someone to come and bring her home. Slowly but surely she has lost her earthly freedoms but thank goodness for the gospel knowledge that her spiritual freedoms, her memories and love, will still remain. I can't imagine how hard this is and it is honestly my biggest fear in life...to not remember. I feel for your Dad and am praying for him all the time! To have a companion for so many years and then to lose them in this way. Stay close to each other. Hang in there and know all of our prayers are with you guys! <3

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  12. What a sweet woman with a lovely family whose service and respect shown in this video is no doubt the reason she can laugh and experience joy during this tragic transition in her earthly life. Prayers and love to you all!

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  13. Your brother's video was sweet and powerful. And I love the role reversal you describe of you praying for your mom in a way that you learned from her in your Mother's Day tribute from 2013. This has given me lots to think about, with respect to trials. The love and testimony in the Weed family shines through regardless of the medium of video (your brother), words (you and Lolly), or steadiness (your dad). Thank you for sharing such a personal part of your refiner's fire.

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  14. Sorry for how hard this is for your family. I love how your brother joined in to help your mom say what she wanted to say....such a loving thing. Both of my parents lingered on this path for several years before their deaths. It is hard. I admire that each of you are addressing your grief in your own way.

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  15. I have been wondering how your mom was doing. Last time I saw her was when I was pregnant with my son Miner, and attending the institute as a PSY student in 2010. I remember thinking she had changed even then. I just love your family to the core. Your siblings, Jennilyn, your Dad, and your sweet mom. I really hope this doesn't happen to my mom, it makes me feel sad to watch this video. But also at the same time I am grateful that Chad made it because it shows me how Alzheimer's affects a family. I'm very sorry your mom is going through this. I think seeing your Dad care for her makes it very heart wrenching for me. Big hugs to your family.

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  16. Such a touching video. So sad. At least we can have hope in the Resurrection.

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  17. This is heartbreaking! Lots of prayers for you and your family especially your dad. Make sure he has a break from caregiving when he can. It can be very overwhelming. I know this from experience. May angels accompany you and your family in this journey. Lots of love and prayers!

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  18. My grandfather has had dementia for probably upwards of ten years. He is 92 and lives with my parents. I go over there often, at least once a week.

    These days he doesn't remember me.. except for the Tuesday before Christmas! I was over as usual, and he asked me, "Are you (insert my parents' names) daughter?"

    When usually I'm greeted with, "Now, who are you?".. his rembering who my patents are was pretty darn great!!

    But yes, I know its hard. I'm so sorry.

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  19. Even though the video brought tears to my eyes, what a lovely tribute!

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  20. I know it was hard to write this post and really hard to ask for help, so I thank you for doing something that really goes against the grain. Sometimes we do this hard thing that doesn't necessarily make us so much a better person but helps a LOT of other folks be better people - I thank you as one of those.

    I echo what everyone has said - it is so hard, and your mom is so lovely. I know from experience that her joy in life is not a given when dealing with this disease, not at all. My hat is off to your dad, and also I sadly agree with the person who said - you never know which family will be hit by this.

    Thank you, Chad for making this video and organizing the fund.

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  21. And here I was, sitting here feeling sorry for myself because my husband has dementia-like symptoms as the result of seizures, a few small strokes, and other illnesses. In the last year, my two oldest children - a son and a daughter - returned from serving their missions, and were both really shocked at the differences and deterioration they saw in their Dad. So I know they would understand where Chad is coming from.

    I don't know if one situation is more difficult than the other, but I'm positive that they both stink. A lot. Because of our own medical bills, I can't contribute monetarily. But I can send prayers and good thoughts to your entire family as you try to cope with your situation.

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  22. To all of the Weed family, I am so sorry for your pain.

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  23. Can you post something else now? I visit your blog semi regularly and everytime I see this post pop up it makes me really sad. I don't know if it is because I have a fear that this will happen to me or what, but please just post something else. Something more lighthearted. I'm not saying you shouldn't have posted this at all. It's just that it is heartbreaking and there needs to be some happiness on the blog now. A baby belly shot. Anything.

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  24. Hi Josh,

    Hope this email finds you well.

    I'm with HuffPost Live--the live-streaming network with The Huffington Post.

    TODAY at 3pm ET, I'm producing a segment on sex & religion and how the two worlds collide, and after reading your blogpost, I think you'd make a great guest on our chat.

    Would you be available to join us as a guest via webcam today for a 30 minute discussion? If interested or available, please let me know and I'd be happy to provide you with further details.

    Hope to hear from you soon,
    Felicia Kelley

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  25. I can't imagine the pain of having a parent go through early onset, she is so young. Alzheimers is a terrible disease. I saw my beloved grandmother dwindle away with it for years. A very hard thing to go through with someone you love. My heart and prayers go out to your family, all those who love her, and to your mother also. Your mother seems like a really lovely woman.

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  26. There is an excellent documentary about a family dealing with early onset Alzheimer's called "Forgetful Not Forgotten." I highly recommend it.

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  27. There is an excellent documentary about a family dealing with early onset Alzheimer's called "Forgetful Not Forgotten." I highly recommend it.

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  28. Josh. There is a lot that I would like to talk with you about. But set that aside, and the video of your mother, and your obvious love and compassion for her, frankly wrecks me.

    I lost my mother just a little more than one year ago. She had been suffering from dementia for over ten years prior to her passing. An amazing, intellectual woman, her deterioration was devastating to herself as well as her family. But she never lost the love for her children that shone from the core of her being, never lost the grace she felt toward every child that came into her view. I wish you, your family, and "Mother Weed" the very best that this world allows. Thank you for sharing your love for you mother with us.

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