This post was originally written in September 2014. I have updated it for today.
Don’t forget November is National Caregiver Month. Be thankful for the caregiver in your life.
On September 20th, I will be mom’s live-in caregiver for a whole year. I should specify here that I’ve been her 24/7 caregiver for a year, but I have been taking care of her from separate houses for about 10 years. That’s a big one for me. I never thought I would survive it, but here we are happy and whole…for the most part. We still have bad days and good days, but how I handle it, that’s a whole new ball of wax.
I decided to make a list of the top 10 things I have learned about Alzheimer’s Disease and being a caregiver this year. I hope you will stick around because there is ALOT left to learn.
10 THINGS I’VE LEARNED ABOUT ALZHEIMER CAREGIVING THIS YEAR
10.) The signs and symptoms of Alzheimer’s and what to be looking for. I realize now that my mother had been showing the signs for years, but we just didn’t recognize them. Here is a post I wrote about this: 10 SIGNS OF ALZHEIMERS/DEMENTIA
9.) The lengths at which a person will go to hide their symptoms. This makes # 10 especially hard. Even though we’ve moved into full- on caregiver mode, mom still tries to hide her symptoms from me at times. OUTPLAYED…AGAIN
8.) How hard it is to diagnose Alzheimer’s. We’ve been to 2 primary care doctors and a Neurologist. Mom has had a physical, family history, MRI, clock test, the sage test and several other tests, but there is no clear cut diagnosis. They all agree that she is suffering from Alzheimer’s, but there is NO ONE test that will diagnose it. These tests were all to rule out things such as a brain tumor or depression etc.
7.) Patience and Understanding. This is a huge one. You really have to slow down. If you try to talk to an ALZ patient the way you would talk to anyone else they are not going to get it. Speak loudly but don’t scream, slow your words way down and use as few words as possible to get your point across. Long-winded stories are lost on them because by the time you get to the end…they have already forgotten the beginning. Spend more time listening to them than talking to them.
6.) Sundowning. Routine and schedules cannot be stressed enough. It makes life go so much smoother. When mom gets up and does the same thing every day, she isn’t afraid as much of what’s coming next. Instinctively she knows. Keep important things for morning time because as the day goes by so does their mental function. They become dull and lifeless in the evenings. One way I have found to help combat this is to leave all the lights in the house. Make it as bright as possible.
5.) How important is a POA (Power of Attorney)? This is a must for any family caregiver to have. As their mental function decreases so does the ability to make important health and financial decisions. If you wait too long then their mental capacity deficit may mean it is too late to sign one. At this point, you would have to hire a lawyer, go to court and request guardianship. This costs thousands of dollars and takes precious amounts of time and it ultimately up to a judge. GET THE POA: hundreds now vs. thousands later.
4.) Keeping track of everything. This is so important you must stay organized. In our house, because I must also deal with my own diagnosis of Felty’s Syndrome we are both frequent visitors to the Dr.’s office. New tests, medications, and treatments. I have several calendars and write everything down as well as file things in a filing cabinet.
3.) As Alzheimer’s progress’, you have to understand the fear of abandonment that goes along with it. If I am out of mom’s sight for very long she will come and hunt me down. She’s not being nosy she is just afraid of losing me. It can get frustrating but if you look at your loved ones face and see the look of happiness when they find you it makes all those frustration dissolve, at least for me.
2.) Hiding your own feelings and emotions. This is one of the hardest as a caregiver, you will go through so many emotions: sadness, frustration, anger and guilt to name a few. Whatever way you feel your loved one will mimic those emotions. If you are agitated and frustrated they will be too. Likewise, if you stay calm and keep a cheerful tone in your voice they will mimic that too and life will be so much smoother. Learning to be a good actor/actress is a must. ALWAYS WITH LOVE
Drum roll please….okay maybe not, anyway, the most important thing that I have learned.
1.) I have learned is that I AM NOT ALONE. Lean on family and friends when needed, delegate what you can use Social Media (it works for me, as you can see). There are also great organizations both local and online that can be a huge help. I have made a list of these websites below. This is not a “one person” job. Just like with a child as the saying goes…”it takes a village” seems appropriate. Ask for help when you need it. Don’t make others guess your needs, be specific. Take care of yourself too!
and as always…
Remember to:
Appreciate the good, laugh at the crazy, and deal with the rest.
I love you, momma!
Excellent post. Congratulations on making it through a year.
I agree that the care receiver wants to hide their symptoms. My late husband wanted to feel normal for sure.
Sorry you do not have tests available. I was able to get those tests early on and therefore have medicine prescribed that slowed down the dementia. Two years into the care of my husband we had an evaluation at the Johnny Byrd Alzheimer’s Institute in Tampa, Florida.
Thanks Carol! Your kind words are so appreciated. Mom has taken a battery of test and yet apparently not the right ones. I opted on my own not to put her through anymore of them. It just wasn’t worth it when I really looked at how it was affecting her.
What an excellent post! I’m bookmarking this for future reference ‘just in case’.
Thanks so much Michelle so glad it can help!
Congratulations on making it a year! Your posts touch so many of us who have gone done this road with a parent that your #1 for me is a bond with you! My Mom went through the anger phase, the calling me bossy phase, the accusatory phase, the helpless phase and like you say “Appreciate the good, laugh at the crazy and deal with the rest.”
What a wonderful thing to say Haralee! I am just trying to navigate my way through all the ups and downs and sharing it all along the way.
I worry about this happening to my parents, so I am going to go back and read the post about the early warning signs. That way I will be prepared.
I hope that these little tidbits may be of help. I also hope that you never have to go through this with your parents. THanks for commenting!
Congrats on making it through a year and a wonderful post it will help lots of people.
Thanks Becca! In some ways it doesn’t feel like it’s been a year but in other ways it feels like forever! Thanks for commenting!
Great list. I wish I had you and your blog when we were going through this with my mother in law. All great suggestions. Getting the POA is so important, and a step that I think people are hesitant to take because it seems so final. Hope you have a great week!
Thanks Lana! You are so right about the POA and it is something I will be talking about more later. We just actually did this about two weeks ago. It is so important and can save you thousands later! Thanks for comments and support as always!
Thank you for taking the time. As a gerontologist, I read about dementia and volunteer as a nursing home, but I really have no idea what family caregivers must do day by day, hour by hour to support a loved one with Alz. Hugs to you and your mom for reaching your one year anniversary in this relationship. All my best to you both.
Thanks Karen! As you know somedays are easier than others but I love her so that makes it easier I would say. I don’t know that I could take it if it were a stranger but I know mom is in there and that helps alot. I hope we have many more anniversaries to come!
This is such important information to know, and you’ve done such a service by sharing your story. I hesitate to congratulate you on making it through this year – I’m sure the whole thing is bittersweet – but what you’re doing is amazing and inspiring.
Thanks so much Lois! I think this blog helps me to not internalize her actions. I know the reasons behind her behaviors so it does make it easier. Even in the middle of a struggle I think “That may make a good post”. I definitely don’t have all the answers but as I find the ones I need at the time I try to share them for the next person! Thanks so much for commenting.
What an excellent post. These are all great reminders for those that have to care for a loved one with this disease. Thanks for sharing! And congratulations to you for being such a great daughter!
Thank you Carmen! I hope these tips will be of use to somebody struggling in the dark like I was for so long. Everyday is different with an Alzheimer’s patient and what works today may not work tomorrow! Thank you for your wonderful comments!
Fantastic post – I have to admit Alzheimers is one illness that really scares me, the idea of losing who you are. x
It terrifies me Sarah! It doesn’t have a cure and it is fatal. Alot of people don’t understand that part. They think it’s just memories but it isn’t. I know this disease will eventually kill my mother but it’s my job to try to keep it at bay for as long as possible and make what time she has left happy and safe!
WOW! You have learned so much in just a year! That’s encouragement for the next year, for sure!
Thanks Kristen! I strongly believe that knowledge is always power…even if we think we don’t want to know. Thanks for commenting!
I can not imagine how much your life has changed in the last year. I am so glad you are sharing your experience so that others that go through this can learn and understand what they are going to be going through.
Thank you Jennifer! I can’t say that I don’t miss my old life but I know that I am where I am needed the most right now! Thanks for your comments!
Wow, I bet you have learned so much with your experience. Thanks for sharing.
Thanks for commenting Amber.
GREAT post and congratulations and hugs also. You are right. You are not alone. I am no longer my Mom’s caregiver because she passed away but I am well versed in these issues now as a result of her health care journey with ALZ. Stay strong. It sounds like you are learning and sharing and you have the bases covered.
Thanks so much Paula! I am so sorry to hear about your mom though. I know that has to be hard and I dread the day when I will have to say the same thing. I appreciate your support and comments more than you know!
Excellent post. It is so scary as our parents get older.
Yes, it so definitely is Nolie! We don’t realize how vulnerable they are sometimes until we can’t NOT see it anymore. People handle things differently but this is the only way I know how to handle it is just to do it! Thanks for your comments and continued support!
Great post! Being a caregiver is so hard emotionally. My top is to be organized. Knowing a good medical history is so vital.
That is so important Maria and sometimes hard to find out. Luckily for me I have been taking mom to the Dr’s for years even before this diagnosis. She is healthy except for a little high blood pressure and acid reflux. So except for the Alzheimer’s things are pretty easy to handle most of the time.
It’s so important to know that you are not alone and to look for support groups for other caregivers. Sometimes you just need to let your feelings out to others.
That’s exactly right! and the reason for this blog. I started this blog after being in the hospital myself. I was sick, exhausted living in a new city, new state and didn’t know a soul. All my friends were back in KY and I felt so alone and isolated. I wrote my first post not long after and this is what I call my therapy! If I didn’t have this I don’t know where I would be!
You are incredible. I really learn so much from you, and I feel like one day you should write a resource or speak on the subject.
The resource book maybe one day. Public speaking never! I can’t even leave a decent message on voicemail without blabbering! I am not good with speaking in public at all! I am trying my hand at writing but it isn’t related to Alzheimer’s not yet anyway.
I agree with that POA, it’s not only useful with someone with alzehimers but I seriously think everyone should get one. You never know what can happen in a heartbeat.
That’s so true Amanda! We have just completed mom’s. I plan to cover it in more detail in a later post. If you look at some of the ads from lawdepot.com they have documents you can print off yourself and make.
These are a lot of great tips. I am sure they will help many people.
Thanks Janell!
I normally don’t copy other comments, but Liz Mays hit the nail on the head with her words. You are incredible and a wonderful daughter. I love reading your blog and I look forward to continuing to follow along.
Thanks so much Lori! I love writing it so here is to hopefully many more years! Thanks so much for your wonderful compliments!
Great post, as always, I’m reading this with interest as I keep a good eye on my mother. She is doing well, at the moment, the signs are there however. Thank you for sharing your experiences.
Thank you so much for reading them and commenting! I hope your mother stays well for as long as possible!
It seems like it’s hard to diagnose everything. Our bodies are so complex.
Yes, they are Heather. Thanks for commenting.
When I was in nursing school, I did my clincals at a nursing home and saw quite a bit of Alzheimers. Your number one tip is so important. Caregiver role strain can be so detrimental to your well-being, so it’s good that you have a support system!
Thank you Nikki! I am never alone I have all of you. I also have some family support too! Thanks so much for your comments!
Congrats on your 1 year anniversary. I appreciate this article and your openness so much. It’s wonderful that you have a support group to help you out!
Thanks so much Jocelyn! I am so glad you liked it!
This is such a great post. I was not aware that they will try to hide symptoms. We all need to be aware of the signs so we can help our loved ones. Congratulations on doing such a great job being your moms caregiver.
Thanks Ann! Yes it is something that was new to me also. Mom still hides the fact that she can’t remember something or she will make up excuses for her often odd behaviors. It is something we haven’t just gotten used to.
Valuable lessons, but last is best. You are not alone. Not only have you found support and dealing with being an Alzheimers caregiver, but you’ve found so much support in general just by putting your story out there.
The friends I have made since starting my blog are my most valued prizes. Friends like you who will listen when things aren’t going so good or cheer me on when something great happens. There is nothing more important than friends and I thank you for your friendship!
Alzheimer’s is such a terrible disease. When I first met my husband 6 years ago, his grandmother was being cared for in her home. She still had some memories of small things and could do a few things herself. She just needed to be watched. About a year later it got worse and she had to be put in a home. The only good thing about that was my step MIL worked in the home and could be there for her. She was perfectly healthy other than her mind stopped working. Now, as it quickly progressed this last year or so, they are starting to liquidate her assets to pay for funeral arrangements. Her body is now starting to shut down and they fear she won’t make it the rest of the year. It’s such a terrible thing to watch someone so healthy just fall apart. I have a lot of respect for anyone who has to go through this. I was thankful I met her when she could at least look at me and smile. Tell me thank you for being with her grandson, for what I see now is not the woman I know and I know its even harder for her family members.
Chrys I am so sorry your family is going through this! It is so difficult and I am not even to the place you’re at yet. It is sad to watch the ones we love just fade away. Keep the good memories in the forefront and support your family. If you need to just talk and get things out feel free to always email me at rm29303@gmail.com while I am the first one to admit I am not by any means an expert just someone struggling to find their own way through this horrible disease. But I am always willing to listen and sometimes that’s all somebody needs is for someome to hear them. I will keep you and your family in my prayers.
It’s awful, I know to hide the symptoms. I’m sure it makes it exceptionally hard on those around the person, but to be very honest, I can see myself doing it too if I were in the same position. I don’t want to need help, and I’m sure others feel the same. That doesn’t make it okay, I know, I’m just thinking out loud.
That’s the biggest thing of it Rosey. We know how much we value our independence and I am sure I would be kicking and screaming myself to lose that. I always try to understand this when dealing with mom. I want her to kept her self-respect and dignity she is already losing everything else so I can at least help her retain these!
A year..wow! You have done a marvelous job. I know its now always easy but I am so glad you are sharing every step of the journey with us!
Thank you Alice! I think sharing this journey with everyone is what keeps me sane! Thanks so much for commenting!
Thank you for sharing this information! It will be helpful for those experiencing this!
Thanks for your comments Krystal!
This is such a journey and I am sure everyday has its challenges. This is a great list of things that I am sure have made you better as a caregiver. Now you are able to share this knowledge and experience with others
That’s my wish Veronica, when I think back to the beginning of all of this it is like looking at two different people. I was so much in the dark in so many ways. I know I still don’t have all the answers but I now possess a self confidence that I have the tools to find the answers I am looking for and if I can help that one person out there out of the darkness than all the better!
Wow I admire you for what you are doing. Having to care for someone with Alzheimers is certainly a huge ordeal. Thank you for writing such a sincere post from your heart.
Thank you Melissa! I enjoy writing and there is always so much more to learn. I am sure there will be many horrible days to come but I feel like with help I can take it. I have a lot of great support and that’s a huge bonus!
These are great tips. I can’t imagine how tough it would be to experience this, but glad you made it through the initial shock and adjustment phase. Writing can be so therapeutic and awesome that you can help others going through what you’ve been through!
It’s alot cheaper than a therapist that’s for sure! I love writing and it is something I have always done in private now it’s more open and I find that it is what I have been missing in my life. Thanks for your comments!
So much to be learned in every situation. You have taken the best parts and put them down for other to learn from. This is a beautiful post!
Thank you so much Ashley your comments are much appreciated!
How wonderful to have all your advice and resources in one page! Thank you so much!
Thank you Roshni for your continued support. It really means alot!
I look down the list of comments and realize just how many lives you are touching. For the better! Way to go, Rena! You are a light to so many! 🙂
You are such a gem! Thank you for taking the time to share your experiences and knowledge to encourage others even with all you have going on!
Omg I just kept nodding my head yes as I kept reading the list! Great points and as for the part on hard to diagnose you are so right. Even now we face some moments when doctors go back and forth with my grandma’s issues. Excellent post, so glad I found you! I said I would follow via email but blog lovin caught my eye first lol.
I believe what you said was very reasonable.
But, think about this, suppose you composed a catchier
post title? I am not suggesting your information is not solid, but what if you added a title that makes people want more?
I mean TOP 10 TIPS I LEARNED ABOUT ALZHEIMER’S CAREGIVING – The
Diary of An Alzheimer’s Caregiver is a little vanilla.
You ought to peek at Yahoo’s home page and see how they create post headlines to get people interested.
You might add a related video or a pic or two to get people
interested about everything’ve written. Just my opinion, it would bring your posts a little livelier.
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Thanks for the critique. Some interesting ideas I will definitely look into.