PT. 10 CAREGIVER SERIES: HOW WE GOT HERE
Today is September 1st and I want to start this month out right. Yesterday I joined in the #plungeforalzheimers by jumping in a lake by my home. I decided to participate fully clothed in my purple pj’s because that’s what I usually write in and we jokingly call them my Alzheimer fighting pj’s but it is all in attempt to bring awareness to the WALK TO END ALZHEIMER’S coming up. Here is that video…enjoy!
We are walking in the WALK TO END ALZHEIMERS on Oct. 18th in Greenville, SC and I would love for you to donate to our team The Diary of an Alzheimer’s Caregiver the link to our team page is here
If you would like to donate to the Alzheimer’s Association their link is here
and now…
Part 10 of our caregiver series “How We Got Here”
This month mom and I celebrate our first anniversary in our new roles and as I look back I can see we have come a long way. The beginning was all about denial, grieving, anger and darkness. I don’t ever want to return to those days they were hard and I have alot of sad memories from those first few months.
Here we are 12 months later and I can say I wouldn’t change things for the world…unless I could make my mom better. I have realized over this year that it is never going to happen. I must deal with her today as she is. She is still my mother and I love her and respect her more than anyone else in the world. We’ve just added the caregiving title as another nuance of our relationship.
When we started down this road she was scared and in denial. She hid her symptoms well and would get angry with you when you brought it up. She still has those days, but they are so infrequent now. The look in her eyes when she is searching me out, looking to me to help in any given situation has replaced that look of hatred and I am so glad it’s gone.Things are calmer now, for the most part. I have a direction in which to head. We bob and weave like a boxer in a prize fight trying to avoid all the many pitfalls that could knock us down.
Stress is number one. This can take a beautiful day and turn it into a nightmare instantly. It’s like a one of those dark, rushing summer-time thunderstorms that you think will never end, but then they do and the sun comes back and you can almost forget it even rained. Back and forth, it doesn’t make for good digestion and probably explains the ulcer I now carry as a battle scar.
We have our established routine and things are good unless “real life” gets in the way and with family it always does. I sometimes feel as if I have a split personality because I have to go from mom/wife/mother/sister/grandmother/RApatient to caregiver and back with the snap of a finger. Sometimes it makes me dizzy, sometimes just really tired. Then I will take a break like my wonderful weekend in Charleston with my husband.
Just the two of us for a limited time only and we worry constantly about her while we are gone. Does she think we abandoned her, is she scared. She was well taken care of, but in the two days we were gone she called me 9 times. It’s funny…sort of. I really didn’t mind hearing her voice and knowing she was okay it would ease my own worries. That’s how it is now. I worry like a new mother leaving her only child. Remember those days, when you would go out for the evening and spend the whole time calling the sitter and checking on them. That’s where I am, but for now, it’s an okay place to be. It could be worse, it will be worse one day.
Remember to:
Appreciate the good, laugh at the crazy, and deal with the rest!
I love you momma!
I hope that walk raises lots of money to help find a cure for this awful disease.
From your mouth to God’s ears Robin! Thanks so much for commenting!
I give you big hugs for who you are, what you do, how much you love your mom and because I want to give you a great big hug. You are an incredible daughter and I am proud to know you.
Ah, Cathy you are one of the kindest, sweetest women I know and you very much an inspiration to me. Thank you so much!
You are doing an amazing job. I wish I had your patience. Fortunately, one of my sisters is a nurturer. She does most of the nurturing for my mother and I take care of her papers.
Thank you Suzanne! It is something that comes easy for me but you do what you must. It sounds like you have a great plan worked out and that is wonderful! Thanks so much for commenting!
It must be very sad to watch a parent suffer from Alzheimers. I think my Dad was starting to get it, but he died before he got too bad with it.
It is sad sometimes but on the other hand it is the most wonderful job I have taken on in my life. I love my mom and she needs me but we are making some wonderful memories. Thank you for commenting!
The plunge sounds like a fun way to bring awareness to Alzheimers. Awesome to see you doing so much to bring awareness to this disease.
Thank you Erica it is a cause that I live everyday and maybe with these donations that may the answer to a cure for this dreaded disease. Thank you for commenting!
It is a good step that her anger is gone and maybe some of her fear because of the job you do so well!
That was one brave plunge!
It is these days she seems much more secure than she did at first. I would imagine it’s a hard struggle for her to hand over the reins to her own life when she has always been such a strong, independent woman! Thanks so much for commenting.
THank you for bringing awareness to this hideous disease. Wow jumping in a lake you are brave.
Well honestly it’s a lake I swim in alot but at 9a.m. on a Sunday morning it was a little bit chillier than I had expected. Thanks so much for commenting.
Thank you for sharing your thoughts from the first year. It sounds like it is difficult but you are really handling well and giving your mother the best care possible.
I try everyday to make her happy. I feel that we are managing pretty good today but there is always tomorrow. One thing I have learned about Alzheimer’s is not to get to comfortable because it is constantly changing. Thank you!
When I read your posts I always feel a warm fuzzy feeling that just penetrates from your writing. I really hope your walk raises awareness and much needed funding to help give and provide the help that is needed.
Thank you Tiffany what a great compliment. I love writing and writing about things that means so much to me only adds to those feelings! Thank you!
What a wonderful mom you have that raised such an amazing daughter! My mom passed from dementia and she pushed us all away and would only allow her ex husband around because he reminded her of her dad. Thank goodness for him.
Dementia/Alzheimer’s is a very scary disease and how people act when they have it is something that can be so painful. I am sorry that your family has gone through this and that it was made more painful because of her feelings and actions. Thank you so much for sharing with me!
Congrats on “taking the plunge”! We did the ice bucket challenge for ALS earlier in the month – I’m so thankful there are many challenges these days to bring awareness to diseases that most don’t pay any attention to!
It is a big help! When the idea presented itself to me I thought it was a great idea. The walk just happens to be coming up soon so I thought what a great way to bring some awareness. So I jumped literally and figuratively! Thanks so much for commenting!
You are so inspiring and I hope you raise a ton of money through the walk.
Thanks so much Lois! Thank you for commenting!
I think it’s great that you took the plunge and that you are walking in the fundraiser!!! Sending love, prayers and good thoughts to you an your mom. It is such a horrible disease. I give you both so much credit for walking this tough road with so much grace!! xo
Thank you so much Kathy what a beautiful thing to say. It really means alot to me.
I hope these efforts will raise lots of funds for Alzheimer’s research.
So do I Veronica so do I!
I admire the way you keep on giving. Between your blog and your other inspiring activities – you’re raising awareness of a terrible disease. Hopefully some day we’ll find a cure.
Thank you so much! I hope that what I do someday helps someone else along the way. Thank you so much for commenting!
I’d like to do more charity events. This wall looks like a good one.
I am very supportive of the Alzheimer’s Association so anything I can do to help. Thanks so much! You can find a walk in your area by going to alz.org! Thanks for commenting!
I bet it was a bit chilly jumping in that water. I will have to see if I can find a walk near me to go out and help raise awareness.
It was! Although later that afternoon I was wishing I could do it again! Thank you for commenting! You can find a walk in your area by going to alz.org!
It must have been hard but how wonderful that you were there for your mother. Kudos for you for taking the plunge to spread awareness and support.
Thanks Onica. It’s an ongoing life changing situation to be sure. Thanks for the comment!
I haven’t heard of #plungeforalzheimers but I think it’s a great idea. Although the Ice Bucket Challenge has gotten a lot of flak for being gimmicky, it raised a lot of money. I think fun challenges are a great way to bring a lot of money and awareness to an illness. I love that you wore your “Alzheimer’s Fighting PJs” to take the plunge!
I do to and look now how many people are talking about ALS. We were told at the meeting last week that 80,000 South Carolinians suffer from Alzheimer’s and that is just one state! Thanks for commenting!
WOW well done you on your plunge – I have to admit I haven’t heard of it, but I hope it helps raise awareness. x
It’s a brand new challenge and we are trying to get the word out. It was thought of by Audry de Wys and Patty Chan Anker nominated me. Thanks for your comment!
It is a great thing that you do. I have heard stories about how this disease effects people.
It’s a terrific cause to stand behind. I hope it raises a ton of money. Thanks for your comment.
I love your video. Great job on taking the plunge! You are such an inspiration. 🙂
Thanks so much Tami!
I can’t even imagine having this disease and seeing someone with it.
I hope you never have to find out Amber. Thanks for your comments.
I watched the video and I love your purple pajamas, by the way. I am hoping that you raise a good deal of money with your walk.
Haha! Thanks so much Pam! I hope that it works and we raise a bunch of money! Thanks for commenting.
Hi Rena. The best of luck with your fund raising efforts. If I lived anywhere near I would be there with you. And I continue to admire your grace as you navigate this experience. As you say, “Appreciate the good, laugh at the crazy and deal with the rest!” ~Kathy
Thanks Kathy! There are walks all over the country being held in the month of October. If you go to alz.org you can find a walk near you for sure. I appreciate you wonderful comments!
My family participates in the Philadelphia area walks. It truly is a good cause. This disease needs a cure and there is a lot of promissing research.
You are doing an amazing job with your mother. Not everyone can handle it.
Thank you so much Doreen! Good luck to you on your walk it is a very good cause to get behind! Thanks you so much for your kind words and for commenting!
Caregiving is the hardest job. You’re really an inspiration, Rena.
Thanks so much Kathleen!
I would totally donate to your team if I weren’t already participating in this walk myself. Keep up the great work though! 🙂
That’s awesome Melissa and even better than a donation! Thanks for commenting!
That’s awesome that you’re actively participating in the fundraising too. I hope a ton of money is scored to help with the cause!
Thanks so much Rosey!
I’m so glad to read this part of the story. I love knowing that you’ve settled into a comfortable routine, all the anger is gone and your lives together are so much better.
Thanks so much Karen, it was a long road but things are much better these days. I know that will not always be the case but we live day to day around here and that is enough. Thanks for commenting!
What a wonderful thing you are doing. You seem like such a strong person. I hope you raise a lot to help this cause.
Thank you Melissa! I am not always strong but I am always able and that makes a big difference! I appreciate your comments so much!
You are doing an amazing job!! Hats off!!
You have become an inspiration for so many people out there and for me too 🙂
Thank you for your words of encouragement Payal! They really mean alot!
Purple PJs sound comfy. I am usually writing in my comfiest clothes too 🙂
Thank you for commenting!
I just posted a short video of a daughter with her mum, who has Alzheimer’s. Thought of you and all you have been though. You have my utmost respect. XO
Thank you Marcia! I saw that video and shared it on my The Diary of an Alzheimer Caregiver fb page. Thank you very much for sending it out and for commenting!
I’m so glad to have met you through this blogging world. You are an amazing woman and daughter, and I’m so happy to know you. LOVED your plunge video. Now I have to build up some courage – all the bodies of water around here are so COLD :)!
Thank you so much Lana and I am also very proud and happy to call you friend! My advice find a hot tub like Susan!
Fantastic way to start a new month Rena! I’m so happy and proud of you. I don’t like cold water so I really admire your gumption.
Thanks so much Elizabeth! I really appreciate your comments.
I know how hard it is to deal with someone that has alzheimers. My grandmother had it and it was some of our darkest moments. I’m trying to find a walk in NYC to walk in this year to help bring more awareness and hopefully give someone else the strength to go on another day.
It’s nice to meet a fellow walker! I am looking forward to ours I would just like to get a few more donations!
You’re so courageous. I admire you and how you share every little feeling and emotion you experience, in such a raw yet so beautiful manner. I am praying that jumping in your purple PJ’s raises a lot of money, and awareness!
Thank you so much Elayna! I hope it does too! Thank you so much for your comment it is very much appreciated!
Best of luck. It’s a terrible disease
Thank you Lucky
When you’re deep into a situation, you don’t always see the positives. It’s wonderful that you can look back and see them now. Bless you for what you are doing for your mother!
That is so true Diane! Hindsight is also 20/20 thanks so much for commenting.
My dad has dementia and I’m his primary caregiver. I do have help during the day so I can go about my business, but it’s still hard and stressful. But as long as I can breathe, I will never put my dad in a home. He belongs in his own home with me.
Right now we are fine without the help but I am sure we will be there soon enough. I agree whole-heartedly.
I laughed and cried through this post… Not because I’m an emotional new (kinda) mom, but because it is a beautifully written piece about the life of a caregiver to this disease. I’ll pray for you daily, for your continued strength and courage. I look forward to more post from you.
Alzheimer’s has always bothered me. Thanks for sharing this awareness.
Did i even say you rocked those pajamas????
Haha! Thanks so much Carol! I didn’t really think about the weight factor of the clothing and slippers! Very hard to swim with, but so glad you liked them!
I love that you jumped in in your purple pjs! Hope the walk garners a lot of money!
And, I’m glad that you and your husband could catch a break, even though I understand that it was under slightly tense conditions!