Jul
09

6 Months

Pete, June 2012

I realize not everyone cares about what I’ve been going through as a caregiver to my step-grandfather. But with the crazy statistic that 65.7 million Americans care for a family member with a terminal illness, I thought I’d continue to share my journey with Pete and his Alzheimer’s with you. Previous posts here and here.

So here we are, six months later.

When I began taking care of my step-grandfather, Pete, I never thought it would go on for this long. We (me, my stepdad, and mom) are currently in the process of interviewing professional caregivers, both due to Pete’s deteriorating condition and my need to get back to my full-time job. I’m a graphic designer as well as a blogger, and while at first I was able to get work done during the day that’s no longer the case. I’m looking forward to the day when I can go back to being his advocate and not the bad guy.

Over the past three months Pete’s Alzheimer’s has progressed considerably, as we knew it most likely would. He essentially has no ability to make decisions, even simple ones like what he’d like to drink or eat. The repetitiveness that was already excessive has quadrupled, I think his short-term memory times out around thirty seconds which can be difficult for us to remember ourselves. It’s so easy to take such things for granted. One major change is Pete’s ability to become angry. He’s always been a very laid back guy, but now gets agitated and occasionally raises his voice. I know it’s the disease talking, but I’d be lying if I said it didn’t hurt to be on the receiving end of. His appetite, which has always been robust, has gradually begun to wan and his voracious newspaper reading has lessened as well. He’s also speaking much less often and has a tough time carrying on even the smallest of conversations. This most likely has to do with his shrinking vocabulary, he’s embarrassed at using the wrong words which elude him frequently. He also nods off much more often (granted, he is 88) and stares off into his own world for sizable parts of the day. Sometimes when he wakes up he has no idea where he is, or where he slept the night before. All of it breaks my heart, but I can’t even begin to imagine how terrifying it must be for him living inside that mind.

A few months ago we did start looking at nursing homes, where he will eventually end up living out his days. Lucky for us there’s a fantastic place only a few miles from my house that caters specifically to Alzheimer’s patients. I visited first, them took my stepdad, and my mom will check it out soon as well. The administration and staff are incredible, the coordinator herself having lived through the disease with her own mother-in-law.

Because I’ve been writing these post in three month intervals, it’s scary to think what might happen between now and the next one. The man I help to take care of day in and day out is now a stranger most days. I cherish the small lucid moments he experiences when he gives me a hug and says just how much he loves me.

46 Comments on “6 Months”

  • Danielle (elleinadspir)

    Oh Kel. This made me cry. You are doing such a wonderful thing caring for Pete. It is just one example of what an amazing person you are. Thank you for sharing all of this here for others, like me, to read.

    07-09-12 » 11:08 am »

  • barb

    Kelly,
    This must be so hard for you and your family. I am sure that Pete loves you so much, deep inside his heart. You are such a strong person and you’re doing a great thing to help Pete during this time in his life.
    Sending love and support your way,
    Barb

    07-09-12 » 11:10 am »

  • Jacquelyn | lark&linen

    I frequent your blog regularly but somehow missed your Pete posts. You are doing such a wonderful thing. I can’t imagine what you must be going through – seeing someone you love in pain is so tough. You’re in my thoughts!

    07-09-12 » 11:54 am »

  • karin rowe

    please oh please hold tight to the good moments and the great memories, the scared and angry is just the disease, not him!

    i thought this video was very moving… maybe something to try?
    http://youtu.be/Fw7Y78aqf_I (i promise this isn’t spammy!)

    07-09-12 » 12:05 pm »

  • Jessica

    Thank you for sharing this difficult experience with us. Life is so precious, and I believe it’s important to realize our daily blessings, whether big or small. Some day we’ll all grow old, and in the process we can only hope to have such caring people surrounding us, too. Thoughts and prayers to you and your family.

    07-09-12 » 12:13 pm »

  • joanna goddard

    oh, kelly, you are so inspiring. you are both amazing.

    07-09-12 » 12:14 pm »

  • Addie

    Huge hugs from me… :)

    07-09-12 » 12:28 pm »

  • Annie

    Thank you for sharing a little of your experiences as a caregiver. Both of my parents had to care for their mentally ailing parents, and I know how emotionally draining it can be. It’s not much, but I’m sure all of your readers are sending you good thoughts during this hard time.

    07-09-12 » 12:43 pm »

  • Meli (Blush + Jelly)

    I can not even begin to imagine how that must all feel. When my Dad went through a heart attack a few years ago he went for about a week not recognizing anyone and raising his voice at me constantly (even though he is usually a very laid back person). It was such a crushing experience for me – you are truly an amazing, strong, and caring person to be caring for Pete. My thoughts and prayers go out to you and your family.

    07-09-12 » 1:00 pm »

  • Noa

    Hey
    Just so you know – I think what your doing is amazing and it takes great strength and courage to help the way you do.
    My grandfather also suffers from dementia, though I don’t live so close to the so I see them only once in a month or so (more when Im off on school vacation) – yet I always feel on the one hand that I want to be with him as much as possible while he is here, on the other hand its so scary and frustrating to see him like this. So what Im trying to say – I know how you feel, and I admire your loyalty to your family.

    Stay strong, and I also wish you more “good days”.

    Noa, from Israel.

    07-09-12 » 2:39 pm »

  • rooth

    I really do appreciate you keeping us apprised of Pete and his condition and how honest you’ve been during this whole time. I’m sorry to hear that he has declined more since the last time we’ve heard about him but I’m glad you guys are hiring a professional caregiver. It should be a bit of a relief for the rest of the family and hopefully help you appreciate your time with him more

    07-09-12 » 2:48 pm »

  • Jenne

    Thanks for the update on Pete. Your comment about three-month intervals struck me particularly hard, and has inspired me to write about my own father’s progressive dementia. I hope you get enough of those lucid “I love you” moments. I admire your strength.

    07-09-12 » 3:39 pm »

  • Nicola

    I’m not sure if this can offer you any comfort but I hope that it does. I wanted you to know that although it can’t feel like it right now you’re very lucky to have had time to come to terms with his condition and to have been able to speak to him about the good memories he has and to have flashes of the ‘old him’ no matter how fleeting they become.

    When my own grandmother succumbed to dementia it happened so quickly (we had all missed the early signs) that we were completely robbed of her, and one of my deepest regrets is not getting to know her better.

    I too hope you get many more of the lucid moments.

    07-09-12 » 5:10 pm »

  • Mara Woollard

    My mom was one of the main care-givers for my grandmother who had Alzheimers, Parkinsons, and Dimentia when she reached the end of her life. It was always difficult when she didn’t realize who I was or who my mother was, but those moments that you have experienced when they express their love for you is really a wonderful feeling. She was treated wonderfully at a nursing home, and lived comfortably through the end of her life. I want to thank you for all of the updates about your Step-father, and tell you that I really admire your strength and your mother’s and step-father’s. It can be a hard thing, but I find it so heart breaking when people give up so easily when taking care of those with the disease. Thank You.

    07-09-12 » 7:08 pm »

  • Tina Ramchandani

    My grandfather had Alzheimer’s and I can’t imagine what you must be going through. I wasn’t with him all of the time so I don’t know for sure if he “knew” what was happening or was scared of it. But the moments he was “there” were the best moments, and made the other times more bareable. It’s tough, what you’re going though, and I wish you the best. You are doing a great thing, taking care of him.

    07-09-12 » 7:27 pm »

  • Miya

    This is heartbreaking—I feel for you so much. Hang in there.

    07-09-12 » 7:30 pm »

  • Gayletrini

    It is so hard to see the parent turn slowly into a child. I had my father visit me a few weeks ago and it was so unnerving to see the decline. I send you positive vibes and a virtual hug.

    07-09-12 » 9:29 pm »

  • Melissa

    I don’t know your pain first-hand, I never took care of my grandmother, but she had very advanced Alzheimer’s and dimensia before she passed. It was tough that she only ever thought I was the cleaning lady.

    I also taught watercolor classes at a nursing home that specialized in Alzheimer’s and Dimensia patients. That was probably the most heartbreaking of all. There was a woman who couldn’t paint, let alone hold the paint brush. It was like watching a six month old in an 80 year old’s body, seeing her try to make art.

    Her husband just so happened to be visiting that day, and as I was working with her he disappeared. He came back with a stunning floral painting, that she had done only 8 years prior. My heart broke to bits.

    I really believe that there’s something better after this life, and those whose brains and bodies that have been marred by diseases are mended and made whole in the after life.

    I hope the home or full-time care pulls through as a positive experience.

    07-09-12 » 9:58 pm »

  • Tricia

    I love your site…new fan. So I had no idea about what you have been going through personally. Wishing you much strength.

    07-09-12 » 10:00 pm »

  • The Lil Bee

    Kel, I had no idea. I’m so sorry. I’m sending you the biggest hugs. I always knew you were amazing, but your selflessness is what really gets me. I wish I had the right words to say, but all I know is that Pete feels your presence and love for him even when the memory of it moves on.

    07-09-12 » 10:07 pm »

  • Ally

    Kelly ~
    You are a kind soul with an amazing heart. Thank you for sharing this deeply personal part of your life. I’m sure deep down he loves and appreciates everything you and your family have done. My thoughts are with you and your family.
    xo Ally

    07-09-12 » 10:24 pm »

  • Melanie

    Kelly, this must be so hard to see. My mom has been going through this with her mother. My grandmother lived with my mother for a while, but is living in a nursing home now. My mom visits her several times a week, but most of the time my grandma doesn’t recognize her. They live in Louisiana, so I don’t get to see them as often as I’d like. I didn’t visit my grandmother last time I went there because my mom thought it would be better if I didn’t see her. It’s been almost two years since I’ve seen her. I think she knew who I was at one point during our visit, because she called my husband “Rob.” My husband’s name is Drew, but my ex-husband’s name is Rob. :) My mom told her Drew’s name and she was like, “I don’t know why I want to call him Rob.” I smiled and said, “Oh, it’s okay. I do.” I’m not sure if I will see her again, and that makes me sad. Sometimes I think I should go back even though my mom thinks it would be hard for me. My mom doesn’t even talk about her anymore and I know that it’s been so hard for her to have to watch her mother disappear.

    I’m sending lots of hugs your way. xoxo

    07-09-12 » 10:36 pm »

  • Stephanie Bice

    Kelly

    I must have missed the earlier posts about Pete, but I wanted to tell you how selfless and giving you are. It takes a special person to take on such an important but difficult task. I enjoyed the laughs last night and hope we can do it again soon.

    07-09-12 » 10:43 pm »

  • Maggie

    Oh Kelly, Alzheimer’s scares me so much. You and your family are doing your very best with your generous hearts to help Pete as much as you can. I wish you all much love.

    07-09-12 » 11:13 pm »

  • Kerry / Paper Dahlia

    Gosh, I can’t imagine living like that. It must be very disturbing for him, to say the least. My heart goes out to you and your family. Wishing you continued strength :)

    07-09-12 » 11:16 pm »

  • melissa

    you are true goodness. your family and pete are so blessed to have you and your selfless, loving soul. there’s hope for the world when i read stories like this…we need more beautiful people like you on this planet.

    07-10-12 » 12:39 am »

  • Chelsea C.

    I don’t know if you believe in God or Karma (or the same thing by a million other names), but just know that you’re a blessing and are making a difference in the world in a very tangible way. My grandmother recently passed and she suffered dementia at the end — I firmly believe that those memory-stealing diseases are the hardest on the family. I guess the only thing to do is to cherish the lucid moments and keep them to look back on during the tougher ones. I’m so sorry for what your family is soldiering through, but so grateful that Pete has someone like you. Hang in there. xoxo

    07-10-12 » 12:42 am »

  • Kirsten Grove

    You are amazing Kelly!!!! My mother and I took care of my Grandma the last 2 years before she passed away and it was emotionally draining. But through it all I realized how blessed my grandma felt, even though she sometimes couldn’t express it correctly. It takes strength to see this through and you are one strong cookie! I’m praying for you dear friend.

    07-10-12 » 1:22 am »

  • Bea

    Thank you for posting this. I´ve never been through something like that but i can imagine… You´re so good and brave. Stay strong!
    Bea

    07-10-12 » 7:42 am »

  • Erin

    Kelly, I think it’s so important that you’re writing about this experience. Thank you for sharing, my thoughts are with you and your family. You are amazing!

    07-10-12 » 9:06 am »

  • gorillabuns

    selfless and caring. we all should be so lucky to be on the receiving end of what you give to him during this time.

    I admire you.

    07-10-12 » 9:51 am »

  • Heather

    Kelly,
    Alzheimer’s has effected my grandmother in the exact same patterns. It’s very hard to watch. It’s a sickness that takes people prisoner. A couple things that have been really successful for us. 1. Get him a baby doll. I know this sounds crazy, but its unbelievable how much it helped. My grandmother loves caring for the dolls.
    2. Picture books with simple reading. I’ve spent hours reading Laura Ingalls, Dr. Seuss, etc.
    Just thought I would share what’s been working for us. My grandmother is in a care-giver home for all Alzheimer’s patients. It’s a really difficult thing, my heart goes out to you.

    07-10-12 » 11:10 am »

  • Rachael

    Kelly,
    I missed your previous posts on Pete as well somehow, I had no idea this was going on in your personal life.
    Your strength and courage in this situation is admirable. I’ve had a grandmother pass a few years ago after years of Parkinson’s and dementia, eventually she didn’t know who my mother was, let alone me. It was hard to watch, and I learned a valuable lesson: my mother was the one that needed comforting through this, not my ailing grandmother (well she did, but her confusion progressed the point she was blissfully unaware of anything but chocolate) — my mother was witnessing an presence she had her entire life disappear before her eyes. My purpose came as a steady support system for my mom.
    If you ever need anything, a helping hand, a cup of coffee with a friend or just someone to hash it all out and vent to — please don’t hesitate to reach out to me.
    Also, since I missed designcrush’s bday on Sunday, we should all do dinner again :)

    07-10-12 » 11:28 am »

  • Alison

    My mom went through this with her mom, but at the time I was too young to really understand the extreme toll it took on her and the whole family. Thank you for being willing to share your story.

    07-11-12 » 12:03 am »

  • Ann

    What an incredible gift you are giving to Pete and the rest of your family. May you know peace and courage in the daily grind and in the days ahead. Even in the smallest of details your care is an ever present reminder to Pete that he is not alone.

    07-11-12 » 3:18 am »

  • michele

    truly. my heart goes out to you. strength isn’t born. it’s created through endurance. and it hurts. i wasn’t there for my own grandfather when he went through dementia. he was up in NY; i’m in VA; we have a huge family so noone asked for my help. I would go to visit with my mother though. It was heart breaking; he lost all english and forgot names. It just doesnt seem fair and makes me fear the aging process. We too shall be there one day it would appear my friend… may we have loved ones there to support as our grandpa’s (step or direct) have had. Big hugs girl <3 You're an angel.

    07-11-12 » 5:13 pm »

  • Emily

    I second Rachael’s recommendation about simple reading. My grandmother (I don’t know if she’s been diagnosed with Alzheimer’s—it’s possible that she has been and my mom has not told me for some reason) loved Nancy Drew as a girl and we thought those books might be a comfort to her, but soon realized that the suspense of the mystery stories, by nature, was upsetting if she was having a bad day. The Little House books and E.B. White’s books have been much better. Has Pete ever been a comics guy? He might enjoy those, or graphic novels.

    Music has also been a source of healthy stimulation for my grandmother, and it has a calming influence on us when we’re with her, too!

    07-13-12 » 10:09 am »

  • krystal/village

    I admire you so much. I have a masters in SW and specialized in gerontology…then worked as a case manager with older adults and families going through this (before I moved to where my degree is not valid!). it was the toughest thing i’ve ever done though, especially having watched my great grandpa move through alzheimers and now my great grandma. I live so far away and was just home in May and got to visit her everyday – I understand your last line about the moments of lucidness when they are back! It’s the best thing in the world. Keep up your amazingness – you are doing one of the hardest jobs ever.

    07-14-12 » 7:13 am »

  • Jen

    Hi Kelly. I just came across your blog and feel like I came across a diamond! You beautifully vocalized so many of the emotions I’ve experienced in the last 5 years caring for my grandmother. Most people don’t fully understand how draining caregiving is at every level. I send you prayers of strength and love as you go through this. I’ve realized the caregiving experience connects you back to the cycle of life, forcing you to confront fears and ultimately reminding you to appreciate the blessings you have now.

    07-15-12 » 9:31 pm »

  • Tina

    I’ve admired you for taking in foster dogs, and today I learn you’re looking after Pete as well. You have a beautiful heart, and I thank and acknowledge you for that.

    07-16-12 » 12:31 am »

  • Lucy Mitchell

    I rarely read about someone who is dealing with dementia themselves. It usually seems to be experienced(by my peers) at a remove, a grandparent or great aunt. My mother started developing dementia at the age of 66, (she is 75 now, in a nursing home)so I know what you are going through too well. It is nice though, to read about it alongside beautiful things. Its hard to explain but I think what I am trying to say is thank you for including your step dads illness on your blog. I wrote a blog about my mum for a while but found it hard enough living the experience, reliving it to write about it seemed a step to far. The very best of luck with the transition to the nursing home.

    07-16-12 » 7:34 am »

  • Sandra

    I admire you and also send you virtual support during this. Our design-y art-y bloggy stuffs are all about beauty and loveliness and often the reality of life is in the background. The far background. Especially the caring for aging parents and grandparents stuff.

    When your parents and grandparents are young, you can’t really imagine what it’s like to be that sandwich with small kids on one side and the elderly on the other. But it’s real life and we’ll all be there someday too.

    My grandmother had Alzheimers and although my MIL doesn’t, she is 88 and has some short term memory issues. Still in her own home but teetering on the edge of needing full time care. So far so good.

    Just having all that on your mind like you do but still living your day-to-day life makes for a lot of grown up thinking and sometimes not a lot of fun.

    Hang in there. And know that you are doing a gracious and loving thing.

    07-16-12 » 9:46 am »

  • Ellen

    I can’t even imagine. You’re all so lucky to have each other.

    07-16-12 » 7:54 pm »

  • Barb @ getupandplay

    Found you via designmom and I am so glad I did. I’m weeping over my keyboard. Hugs.

    07-18-12 » 9:14 pm »

  • Ashli Presley

    Thank You so much for sharing your story. My dad’s story ended in tragedy. You can read about it here:
    http://www.greenvilleadvocate.com/2012/04/18/authorities-find-missing-man/
    Please consider telling your readers about the non-profit agency http://www.projectlifesaver.org
    Project Lifesaver is a company that provides training and resources that help police agencies search for individuals with Alzheimer’s, autism, Down syndrome, dementia or other cognitive conditions. Citizens enrolled in Project Lifesaver wear a small personal transmitter around the wrist or ankle that emits an individualized tracking signal. If an enrolled client goes missing, the caregiver notifies their local Project Lifesaver agency, and a trained emergency team responds to the wanderer’s area.

    07-19-12 » 2:17 pm »

  • Alya

    What you’re doing is wonderful, Kelly. I have no idea how it is to take care of someone with Alzheimer’s, but I do know that taking care of someone who’s old in age is extremely hard.

    We went through it with my grandmother, may she rest in peace, but I wouldn’t trade those hard days for the world!

    No good deed goes unrewarded, and you can be sure that when you get to Pete’s age, there will be someone as loving and gentle as you, who will be there taking care of you.

    08-25-12 » 6:18 pm »

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