HAPPY HOLIDAYS…NOT!
PT. 5 CAREGIVER SERIES
HOW WE GOT HERE
This is a repost from July of 2014 that has been updated for the here and now. This is a look back at our very first Christmas together. Hopefully you can learn from my many mistakes!
The last 2 months of 2013 I spent correcting, reminding and bossing my mother around. We barely made it through Thanksgiving and Christmas Eve. Mom was extremely difficult on both of these holidays. She was unfriendly and wouldn’t talk to anyone. She sat in the corner and passed out dirty looks as if they were one of a kind Christmas presents. I couldn’t figure out why she was being so grumpy when her children and grandchildren were finally all together, especially since this is all she had talked about for weeks.
My answer wouldn’t come until many months later. You see, in my family we have a Christmas Eve tradition. This is when we all get together for a big dinner and exchange gifts. That’s the problem. Christmas Eve is in the evening and when you add the chaos of a houseful of company I was just asking for a disaster.
Sundowning is the term used to describe what begins to happen to an Alzheimer’s patient as the sun goes down. They become steadily worse as the later it gets. Lethargic, angry, agitated. They become dull or lifeless. By having our celebration in the evening we were unknowly setting ourselves up for failure. A morning brunch would have been the optimal time or maybe even a luncheon.
It made me realize that our tradition would have to be altered a little bit. As a caregiver you will have to make these little adjustments to keep the agitation and frustration from becoming overwhelming. You will have to learn to be flexible. Things can change on a moments notice and you will need to be able to react accordingly.
If I could give one piece of advice it would be this…Don’t wait! Don’t wait until you are a caregiver to learn what to do and how to handle this new role. If you have any idea that this is where you are headed start researching now. I wish I had…
Remember to:
Appreciate the good, laugh at the crazy and deal with the rest.
I love you momma!
I hear you on this one. Loud and clear. Great post, and we still love our loved ones. Forever.
Thanks Cathy!
This is a really great post, people really need to know the side effects to know what to look for, so when it happens, they know what to do.
Thanks so much Natalie!
Flexibility certainly is important but I can appreciate the amount of hard work that is needed!
That is one of the most important trait a caregiver can have. This is also something that has never come easy for me, but with time I feel I am getting better at it.
I totally can relate to this. I was 12 years old when I had to move with my mother into my great grandparents home to help out with both of them living with Alzheimer. There is nothing like family support and never being afraid to ask for help.
I have learned that valuable lesson lately. I always feel like because I don’t have a job that it is up to me to do by my self. But you still can’t sometimes I just want to be a wife to my husband and a mom to my daughter. I have had to learn to take off the caregiver hat sometimes and that it definitely doesn’t mean I don’t care.
Great post, I can not begin to imagine how hard it is.
Thank you Kay.
The holidays were always an interesting time when my grandma was alive. I know that for her she would just sit in her chair and hum and sing to herself. I remember one time in particular when my son was still a blanket baby that we let her hold him because she was in a big comfy chair and figured that would be okay. We looked away for a moment and she went from feeding him his bottle to feeding herself his bottle. Alzheimers can be such a tiring disease for the caregiver.
Oh my! I think that is one of my biggest worries. My daughter is having twins this winter and I want to be able to keep them enjoy every second of them and not be concerned with how mom will be. But I am scared about it alot.
I can not even imagine how hard something like this must be. Hang in there 🙂
Thanks Robin! when it is a loved one you just want to do the best job possible.
I think this is a blog that everyone should read. Your postings, not only apply to an Alzheimer’s caregiver, but to anyone who has to take care of a loved one.
Thank you very much Tami! When I first began this, it started out as a way to vent what I was feeling. I didn’t have friends here in SC at the time. I was so lonely and isolated and I still am to the most point but this has given me the motivation to step out of my comfort zone in other things too. So overall it has been a great catalyst for change.
Oh so true it is hard to be a caregiver but there are moments when it is worth it.
yes, there are. We have had some very bad moments but also we are closer than we have ever been.
Sad news is that the holidays will be here before we know it! Time flies!
Yes! It flies by and she even made the comment the other day that she couldn’t wait until Thanksgiving! I just smile and say I can’t either momma!
I can’t imagine what it would be like, definitely something we all need to be aware of as its a position we could all end up in at any time sadly. x
If you are not a caregiver the chances are you either will be or will know one. That’s alot of people in the world.
I was young when we took care of my grandmother. I can still remember how hard it was and the days of walking into a room where she was at and she had no idea of who I was. We finally got to where we would basically tell her the same stories over and over. I did love when she shared stories like she was a child again, getting to hear all of her memories and the things she did as if she was there was actually beautiful. I do wish she had not gotten sick, but at least I learned a lot about her life from it.
I have learned more about my mother’s life than I ever knew. I have written several stories on it in fact. That is definitely one of the up sides. You are also right about telling her the same stories. If we think of one that makes her happy we will tell it over and over.
I was a CNA and did not have the patience for the actual people I worked around (co-workers). I did however have compassion and understanding for my patients.
Yes it is amazing how much our patients grow for someone who can’t help themselves. Those that can is a much different story.
It’s great that you care so much and are doing all you can now. Learning from mistakes is the best we can do sometimes. I’m glad you were finally able to figure out the problem.
There is something new to learn everyday. Even if it is the smallest thing. My father always said the day you quit learning is the day you are dead.
I have to say this is a really great and honest post. I am not looking forward to these years when I will have to be a caregiver to my father. I need to start looking into this now. Thanks again for your honest and real emotions.
Thank you! It is a difficult thing to know this will someday be your future. But with learning I have learned to more patient than I have ever been and it really does carry over into everything. I am a nicer person than I used to be and I don’t get as flustered (usually) when things change suddenly.
So heartbreaking but so true. We just don’t appreciate the little things until they’re gone. Great advice.
Our parents knew us before anyone and I have always felt it was my responsibility as her only daughter to see her through until the end or as long as I can.
It has to be so difficult maybe she couldn’t remember some of the people who were there and it was making her upset or she forgotten what their favorite things were to get as gifts and oh so much more I am sure is going on in your mom. I watched my grandma dad in a nursing home he was trying to convience me he had candy from the bubble gum machine then he had me hide behind a chair with him as he though we were in the war. I went along with it being little it didn’t make since but now I know it’s just less stressful on everyone if we go with the flow.
Yes, in their world it is true and it does make all the sense in the world. When they look at you and you understand this calms more than anything else I have ever tried. I tell my other family members this. However she tells it, no matter how screwed up it is her truth now, go with it.
That is really great advice. You have to adapt and change your ways and think ahead. Proactive instead of reactive.
Yes!!! The more you know going in the more confident you will feel which in turn will show confidence to the Alzheimer’s patient. They will trust you!
Yes in every sense of the world. If I am in the kitchen I have to worry what is going on down the hall or outside all.the.time. It does get difficult we all have our moods and some are better than others. I think with Alzheimer’s those moods are enhanced for lack of a better word.
That’s true and something I try to practice while I preach it. It’s not always easy but ALWAYS worth it.
I like that amidst the chaos, you demonstrated flexibility to change the tradition to something that would be most serving. You are inspiring!
Your patience/tolerance/love level is high. That’s a win-win-win for you and everyone around you too. 🙂
You have an amazing sense of personality! Thanks for sharing this story
My mom took care of my grandmother and it was hard on her at times, great advice at the end.
I did a training in a hospice for 2 weeks back in 2005. It was hard. I don’t know how anyone would be able to do it. I admire you for staying so strong.
You definitely have to alter your life when you are a caregiver. However you get to make memories still, that will last a lifetime.
I’m sure this blog is such an important place for you to share your thoughts and experiences. I love how candid you are.
that was really interesting Rena – I didn’t know about sundowning but it makes a lot of sense (it affects midlife women too :P) Hope this year’s family Christmas went well for you all xx
It’s all about learning and adapting. We had to work our Christmas around nap time this year.
If we had only known then what we know now… alas, it’s too late 🙁
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Who knew time of day could be so important? Now that I think about it, I also see the same tendency in our toddlers and even our older grandkids. Mornings are definitely better!
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Hi Rena! really good reminder that so much of what we’ve done in the past needs to be reconsidered as things change. I hope that your current (2015) Christmas went much better and that you are facing and looking forward to a happy 2016 and everything it may bring. ~Kathy
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