PT. 8 CAREGIVER SERIES
“How We Got Here”
The night of January 10, 2014, ended on a fairly even note, but I knew things had to change. I could not go through another day like the one I had just survived. It was my 44th birthday and it had been awful. One I would never be able to forget and yes, I still couldn’t talk!
I went into my bedroom, my sanctuary from craziness, armed with my sweet tea (as usual), my tablet (as always), a broken heart and a feeling that if I didn’t figure some things out we would all go crazy.
I went to my old friend Google at first and just looked up Alzheimer’s Disease. Of course, I got the meaning, symptoms, and signs, but I already knew that. I had taken mom to two doctors already. I needed to know how to learn to live with it on a daily basis to keep myself from going insane.
I found an interesting website called the Alzheimer Reading Room (those that are here often know I talk about this site all the time), but this was my very first visit. That article I read “Communicating in Alzheimer’s World“, I believe it saved our lives. I read it twice and cried so hard because these were the answers I needed to hear. I actually left a comment and it’s funny I looked back to make sure I copied the link to that article correctly and my first comments ever made on any Social Media are right there…still. It brings back tears to see what I wrote and to remember the desperation and the depression I was feeling.
You see when I was released from the hospital one of the Dr.s that was taking care of me brought me a name and a phone number for a therapist. She didn’t want to upset me, but she knew I was depressed and overwhelmed and wanted me to talk to someone about it. I guess eventually I did…it was just Bob DeMarco and then all of you. If you go back and read this article and I really hope you do, check out the comments at the bottom.
Mr. DeMarco answered me back almost immediately. Somebody had actually heard me and was throwing me a life preserver. I stayed up that whole night reading article after article. The more I read the more confident I became. At first I was a little too gungho. I made so many changes at once that I overwhelmed myself that way. I started a rigorous exercise program, quit smoking and made many more changes.
Over these many months I have tried to figure out what works for us. I am ashamed to say that I picked smoking back up after quitting for two months, the exercise comes as it can for me with RA. If I can’t walk it doesn’t mean mom can’t. I have neighbors that keep an eye on her and since we live on a dead end road we are good for now. I know this will not always be okay. She stops and visits so I always know what houses she has been past and sitting on the front porch I can see all but about 500 feet of her walk.
I use many tips and tricks to make our life easier. Some days are good, some are great and some are just barely getting by. The main thing that I had to learn was that I can’t change mom, that was never going to happen. I had to change myself, how I thought about Alzheimer’s and most importantly that I WAS NOT ALONE as I had first believed. It is mom’s world now, we just live in it. If she says it’s raining out and the sun is shining brightly in our house, it’s raining. Whatever she says that’s just the way it is.
Remember to:
Appreciate the good, laugh at the crazy, and deal with the rest.
I love you momma!
Being a caregiver is very challenging. My Dad is gone now, but he could be very stubborn at times.
It is very challenging but there are also alot of cherished memories that we are making!
You’re right – it is important to remember what you can and contribute to being a positive force.
I have found that whomever is around her at any given time she will reflect their mood. If your stressed, angry or sad she will mirror those feelings and emotions. In the same token if you remain calm are upbeat and cheerful she will feel that and mimic it. Things go much easier if you try to stay with the later.
Great suggestion! I work in long term care and also love Hard Choices for Loving People. Such a sad book but inspirational and helps one accept their choices they have made with love.
I will have to check into that one thank you Maria!
My grandmother suffered from Alheimers and it was one of the most difficult things I’ve ever seen happen to a person. It’s incredibly hard for the person and their family to see them slip away.
It is Jen and I know that it will get much, much worse. Right now we are just trying to enjoy as much as we can before it does. Thanks so much for stopping by!
You have such a difficult job, being a caregiver is tough enough – being a caregiver for someone with alzheimer’s is one of the hardest jobs out there. Stay strong.
Thanks Jennifer this is my outlet for all that stress and it is such a great stress reliever to be able to pour it all out sometimes.
It’s so important to find a good support system when dealing with these kinds of issues! So glad you found your doc, and that you are using your experiences to help others, too!
This was way cheaper than therapy Kristen! Sorry that probably wasn’t appropriate because it is hard but if we can’t laugh we would be crying and I would much rather laugh whenever I can!
So wonderful you were able to make it through a tough time. It is important to know that others out there care and have had similar- or even the same- experiences as you. You aren’t alone!
Thank you so much for your support Samantha. I always love hearing from you and every time I see your name I think of wedding dresses and hockey sticks and it makes me smile…every single time!
Getting support and advice from others who had been there was the thing that helped us the most in our journey. You are so right that you can’t change the other person – you have to change how you respond to her. You’re doing such an amazing job!
Thanks Lana! I love my mom and only want to do what is best for her. I know I make mistakes all the time but I am trying my best and that is all we can do. Thanks for always being here for me!
My daughter has autism, and being a 24 hour caregiver in addition to every day life is taxing. But definitely rewarding. It’s nice to know that you aren’t alone in that though.
You are so right Kori! My nephew was diagnosed with autism when he was three years old so I have a small idea of what you are going through. I have always believed that my husband is an un-diagnosed case of autism just because of the things I have read about it. It must be so hard for you, but you are not alone. I am here if you ever need to rant or rave.
I am going to share that website with my mom who cares for my grandmother. Sounds like a great place to get support and resources.
I would be glad for her to join up Michelle maybe she would be interested in writing a story about her experiences as a caregiver. Sometimes that is all a caregiver needs is their voices to be heard. Let me know if she would be interested if not we are still glad to have her!
I am so glad you were able to find answers and support. Caregiving for a declining parent is never easy, but I am sure deep down your mom appreciates being there with you.
Thanks so much Jen!
What an enormous load you carry each day! And you do it with such grace! I’m going over to read the article you highlighted. You are such an example to me!
Are you kidding Diane, you are my hero!!!!!! I have looked up to you since the first time I read your blog way back when I was still on blogger! When I write, I always go back and read as if I were you. Would you like it, would you approve. I know I will never get mom’s approval for what I am doing she doesn’t understand, actually she just tells me I’m lazy believe it or not, because I spend a lot of time writing and she doesn’t understand the RA either but I know in my mind that it’s not her saying it, sometimes I have to remind my heart!
You must have gone through a lot but it is good that you know you are not alone.
Some days are great, some days are good and we get by on the rest. She’s alive and that’s better than not to me! THanks Kay!
this is the 2nd time today I’ve said that a sense of humor is a great survival tool! It applies in so many circumstances.
With a great sense of humor you can survive anything!
you are a very strong woman..may god give you the strength to survive all the obstacles in your way..
Thank you so much akshayravi! what wonderful words.
I’ve never had to take care of someone who’s had Alzeheimers before, though from this post I can tell that it’s no easy task at all.
No it’s probably the hardest thing I have every done.
I’m so glad you found a lifeline in Dr.Demarco and that now, looking back, you can see how far you have come in handling your situation.
I hope every caregiver finds his site Marcia it has helped me so much. Whenever I come to a problem I go there first and foremost.
I couldn’t imagine the struggle of becoming a caregiver for someone with Alzeheimers.
It is very hard.
I’ve personally never had to deal with Alzheimers but I can certainly understand the stress that it can put on on family members. Thank you for sharing that site so that if I’m ever in that position I can have a life preserver like you did.
I hope so Amanda but I hope more than anything you never have to deal with it.
Of course I would do this for a loved one, but I don’t know how well I’d handle it.
You would surprise yourself Heather. You find strengths and weaknesses you never knew you had.
My great uncle had Alzheimer’s and I recall how difficult it was for my grandparents to care for him. I will keep you in my thoughts and prayers as you embark on this caregiver journey.
Thank you so much!
Being a caregiver would be hard yet rewarding. It must be exhaughsting at times.
Yes sometimes it is Ann.
My old neighbor had Alzheimer’s . When we first moved in.we didn’t know . She would sit on the porch every day and when I’d come home she asked the same questions. What floor do you live on? Are you married children? Eventullay she remembered me , she was so sweet. I would sometimes sit and she would tell email about Greece, NYC, dress tailoring, and not to get old lol. One of my favorite things is when she saw my cat (he’s black & white with long white whiskers) she said I love his mustache lol I miss her
What a sweet memory Carra! Thank you for sharing.
I commend anyone who’s a caregiver. I’m honestly dreading the day I have to take care of one of my parents. I have very little patience for things and I’m always in a hurry to go go go…
Thank you Anna. It was something I new would be coming down the road. I just thought the road would be longer.
It’s really uplifting to see that you were able to find the support you needed. My grandfather is currently struggling with Alzheimer’s and it is heartbreaking to watch. But great point, always remember that you are not alone.
This is so true Cory. I am sorry about your grandfather. I hope you will seek support through this difficult time.
I admire you so much for taking on the role as your Mother’s caregiver!
Thank you so much Haralee.
I’m so glad you found someone who could help. What a challenge caregiving is. Sending out good thoughts to you and your mom.
Thank you so much Lois.
Your challenge is a big one but you face it bravely every day with the graciousness to share your experience with others. Thank you.
Thank you so much what a beautiful thing to say!
You are an inspiration to so many. When I read your posts, I am reminded that everyone has their personal struggles but we are all doing the best that we can, with what we’ve got. I strive to be a better person everyday because of people like you.
What a wonderful thing to say Tami. This actually brought tears to my eyes. Thank you so much! Sometimes as a caregiver especially to an Alzheimer’s patient you feel so unappreciated. This was nice.
It has to be a hard job being a caregiver. My mom does that for a living. She has more patience than I do.
God bless your mother Veronica is a VERY hard job. I can’t imagine doing it for a stranger she must be a very special lady.
I think that knowing that you are not alone must be a little helpful. One can breath a little easier knowing that there is someone they can relate to that can help them if they need it.
You are so right Gabby!
Awww that’s both sad but uplifting. I would never know how hard it feels like someone I love is in the same situation.
Thank you Roch
I’ve cared for the very young. I couldn’t imagine from the other side
It’s alot of the same Christie! You wouldn’t believe how much.
Being a caregiver is one of the hardest jobs ever.
So agreed Becca!
I can’t even imagine. What a patient and brave person a caregiver is.
Sometimes neither do I Amber!
The internet is so valuable for making connections like this. My daughter is autistic and having the support of an online community has been priceless!
You are so right Carly! No matter what your struggle is, everybody has them and connecting with other people could make a huge difference.
It takes a special person to be a caregiver. Thanks for the great inspirational post.
Thank you Nolie!
I can only pray that I don’t ever have to know what it feels like see the ones you love suffer from this disease. Praying that you have good days.
Thank you so much Marielle!
Caregiving is a very difficult job to do. A good laugh is needed for sure!
So true Annie!
I haven’t had to do this but i have seen what its like for someone else, it can be hard but its worth the memories you make while you can,
So true Samantha!
Thank you for sharing your journey, I’m learning a lot from reading your blog..
Thank you very much what a nice thing to say.
I love how you have made changes along with how you feel now with the things you now realize. You are a inspiration to many and you really should feel so good for that. I have always loved your quote at the end of each post also. Thanks so much for sharing.
What a beautiful thing to say Rebecca and I thank you very much.
My mom passed away not too long after receiving her cancer diagnosis, but I remember thinking that we could fight it, that we could go on and I’d just stay home from school (I was in high school) and take care of her. My entire life would have been different, I’m 100% positive of that. Anyone who makes the decision to care for someone long-term is an unhung hero in my book.
Oh Mandi, I am so sorry about your mother. It is never easy but I also lost my father when I was in high school and I don’t think it is something that you ever get over especially at that difficult age.
I think it’s wonderful that you found relief in online support. And now you’re offering the same to others here!
Thank you Rosey. This is so much cheaper than therapy! Just kidding!
Thank you so much Dawn what a beautiful thing to say.
I think the most important thing that I want to remind you is that You are not alone. Eventhough things can get crazy and overwhelming don’t forget that you are not alone.
Thank you Leira you are so sweet!
Such an amazing, yet difficult job you have! Prayers your way!
Thanks Angela!
It is good to know there are so many people out to support you and can identify with what you are going through. The internet is very useful for things like that these days!
Yes, it is Risa. I sometimes think about how people years ago had to deal with these issues.
Interesting post. GLad to hear of the new developments.
Thanks Krystal!
Hi Rena….it can be very overwhelming indeed in dealing with a Alzheimer’s patient. Lori’s mom started showing signs back in 02 and by the time we got married,it was there. I think her dad did a remarkable job in caring for her but he wasn’t as open minded as you were in reading up on it and getting yourself ready. You are a lovely daughter to embrace your momma and to care for her. My only concern is knowing what your limitations are,if it gets too much,can you recognize that and seek out long term help? I think you are brave in sharing your story..
Thank you Michael and this is something I think about alot. I know I have my own health concerns and today I feel fine but one day I might not. I basically deal with it on a day by day basis. If it should come to a point that I could no longer do it then I would make other arrangements. I will always be her caregiver even if she gets to a point where I couldn’t do it 24/7. I hope I could recognize it but if not my husband would and he wouldn’t take the chance of my getting ill again. I wouldn’t put him through it. It was a very tough time for us as you can imagine. I am actually writing a series about that next so stay tuned…so to answer your question I would hope that I would be able to recognize it and either arrange for help here or in an assisted living environment. I just want to keep her with me as long as possible but not at the risk of my health or marriage. I really enjoy these little chats with you. Hope you will stick around, I followed your blog this morning even off the thread. So I will get all of your posts in my email. I really enjoy them.
Thank you for sharing all of this. I’ve never been a caregiving but know a lot of friends who are. I will share your site with them.
I hope you will Sandy and that of the Alzheimer’s Reading Room. While I am learning about ALZ on a daily basis I know what it is to feel isolated and alone!
Caregiving is very challenging and it takes a lot of courage and patience to cope with everyday life. My father is a dialysis patient and I also experienced many negative things but I always think positively because at the end of the day their life is one of the most important to us.
Exactly Kathy I couldn’t have said it better myself! I am sorry for your family and I hope things go well with you. Thank you. I will keep you in my prayers.
A caregiver is a very hard thing to do especially when it’s for your parents.
That’s for sure Chrissy that makes it alot harder because it changes the whole parent/child relationship.
Your right, your not alone. Having others to talk to is helpful. I used to be a caretaker for a lot of different people and my last client had Alzheimers or at least showing signs of it. I’m glad that you post about what your going through. Take care.
Thank you Bonnie. That’s the worst thing about being a caregiver to family or anyone for that matter. You begin to feel isolated like you have been left out of the world and don’t know what’s going on this usually leads to depression.
I love reading about your journey because you give so much hope. However, you don’t sugarcoat it either.
Thanks Liz what a nice thing to say!
You have taken on such a big responsibility. I admire your strength.
Thank you Toni, although I don’t always feel strong.
I have always thought how awful it would be to deal with Alzheimer’s “up close and personal” … bless you for all you are doing to try to keep yourself as healthy and balanced as possible while taking care of your mom and trying to better understand the “new normal”.
Thank you very much. Learning that mom will never change was a big eye opener for me. I thought if I just reminded her enough she would finally be okay. That didn’t turn out so great. Luckily I found the help I need when I needed it the most.
Thanks for this! My grandmother has Alzheimer’s and my mom takes care of her too. It’s such a sad disease.
Yes it Rachel in so many ways and on so many levels.
I watched my grandfather struggle with Alzheimer’s. It was a very difficult process to watch. I have a huge respect for what you are doing.
Thank you Kathy but I really don’t have a choice. She’s my mother, I love her and she needs me end of story for me.
I’ve not been in your situation, but in general I think the best steps in any stressful situation is finding a support community and finding someone to talk to individually. You’re so lucky to have landed on that website. It was meant to be.
I have been blessed in so many ways since that night. I was given the knowledge and guidance I needed when I needed it most. It really changed my whole life. It opened a whole new world for me. Not only the knowledge I’ve gained about Alzheimer’s but also Felty’s syndrome and even Social Media. That article was like sticking my little toe in the water. Now I have dove straightmin and it has brought me knowledge, support and lots of new friends like you Karen!
deal with it and accept everything. its not easy but its already there. acceptance will be make it more light and good day by day and get used to it until you can notice that its not like there anymore. Goodluck to you dear all the best!
Yhank you Jane!
Great post. I recently lost my grandma although she didn’t have Alzheimer’s she was persistent and could be aggressive at times. In the end I learned as you did to just agree and we argued less.
That’s it, when I discovered my need to be right was what was driving up the stress level I was shocked. Letting that go was so hard but so worth it.
Though I have never personally known anyone with Alzheimer’s, my husband’s grandmother had it. He talks about her struggles often.
I hope your life manages to avoid it forever Dawn! I wouldn’t wish it on my worst enemy.
What a wonderful post! I have not had to care for a parent yet but I know my day will come. And, I can only hope that I will care for them as lovingly as they cared for me growing up. You have a wonderful perspective and I am so glad you have a strong support base. My Aunt was diagnosed with Alzheimers when she was just in her late 50’s and I have seen first hand the effect this disease has on the individual and those close to them. Many prayers for your mother and you and your family.
Thank you so much Suzanne. My parents were so loving during my childhood, myfather died suddenly when I was 15. So I feel I owe it to her because she took such good care of us.
It is not an easy route to take thus, I think highly of those who can engage with it as it takes a lot of patience, resolve to work in that field.
Thank you Aisha!
I commend you for being a caregiver to your mom. Not only is being a caregiver hard but I think it is harder when it is our parent whom we love dearly. I am glad you are finding it therapeutic by writing. We all need something that helps us with our daily lives. Your mom is very lucky to have you.
Thank you Patricia, I have been very lucky for 44 years to have her.
I don’t have any experience as an Alzheimer’s caregiver but I am the caregiver to a young child with Juvenile Arthritis and chronic pain. Finding other parent’s going through the same hardships made a world of difference.
I also started taking much better care of myself because I have to stay healthy so that all my focus can be on helping my daughter.
I love the post, Rena and hugs.
Thank you and I believe I recently read your blog about your beautiful daughter. Having Felty’s syndrome I know about her pain. It makes me so sad to think of a child going through that and you too as her parent. I hope God watches over your family. The way you have chosen to deal with it and teach her to be responsible for her own health really impressed me and touched my heart. She is a fighter and I will be cheering for her and you!
We recently lost my grandmother to Alzheimer’s, so I know that it’s a very hard process to go through! Your love, compassion, and patience will be rewarded one day, and it WILL make a difference to your mother! I also recently lost my mother, and I’d give anything to have another day to spend with her.
Talk about putting it into prospective Ashley! I am so sorry for the loss that you have had to endure. My thoughts and prayers are with you. Thank you I really needed to hear this tonight of all nights.
Care giving is a lot of work. You need to make sure your loved one is cared for while respecting their needs. Its not always easy but it has rewarding moments.
That’s so true Onica, thanks for reading!
this brings back so many memories of my own journey with Dad.
I’m amazed everyday how many people are affected by Alzheimer’s Disease.
The acceptance that you’re living in HER world now, that is perfect. I feel that way when dealing with patients who have incredibly severe symptoms.
I’m glad I read this today. I had lunch with my Grandmother, who has dementia, earlier today. My Mom takes care of her and I think having a community of support has been immensely helpful for her as well.
The need to do be right isn’t always what’s best. It’s more imortant for them to feel loved, safe and protected. Thanks Aussa best wishes for your grandma! And blessing for your whole family.