CAREGIVING IS MORE THAN JUST A TITLE
PART 2 OF THE CAREGIVER SERIES “HOW WE GOT HERE”
A CONTINUATION OF “THE BIRTH OF A CAREGIVER”
My last post I explained how I came to become my mom’s “caregiver”. Just because you take over the title of caregiver doesn’t mean you really are one. This is a lesson very hard learned. Actually, one that I continue to learn every single day. When I started to make arrangements to move my mother into my home I had absolutely no clue what I was doing. I was devastated by just the mere thought that my mother had Alzheimer’s Disease. All I could think of over and over was that she would be forgetting everything. How long would it be before she forgot me? Face it, we have all seen those portrayals of an Alzheimer’s patient. The ones where they are in nursing homes screaming and yelling all the time. The ones where the patients start beating on people and accusing them of all kinds of stuff.
I had no idea what was going to happen. I just felt this desperation to stop whatever it was that was taking my mom away. I would wake up in a cold sweat night after night. I would sneak to the other end of the house and just sit outside her room waiting and listening to the sound of her breathing. I had no idea what I was waiting for. To wake up and it all had been a bad deam maybe. There had to be a way to stop this, cure this, anything…I would have sold my soul to the devil! This is the woman who held me through every betrayal, trauma and heartbreak I have ever had!
My mother and I have always had a very special relationship. I am an only daughter with four brothers. She and I have secrets that will never see the light of day. She has only let me down one time in my entire life and has spent HER lifetime trying to make it up to me. She who has been by my side no matter what, right or wrong. I have talked to her EVERY SINGLE DAY of my life either in person or on the phone. Don’t get me wrong, we both had our own lives. She worked and had friends and I married twice and had 2 of my children, she was just always a big part of my life. I lost my father so young and now mom too, I just couldn’t get a handle on it. I was so stuck in my grief, it was like quicksand and I was thrashing around sinking deeper and deeper with every decision I had to make. How would I ever survive without her?
I also grieved for what SHE was losing. She had a wonderful marriage to my father but she has been a widow for the last 29 years. She never dated again. Choosing one great love over many partial ones, as she puts it. She enjoyed her independence tremendously, a product of her strict upbringing and early marriage. She had sisters and friends that she traveled with frequently. She was an active mother and grandmother and she loved her life. It was to awful to even think that she wouldn’t couldn’t be herself anymore. I would cry all the time. I couldn’t look at her for months without breaking into tears. It was like she had already passed away. I can’t imagine how I was making her feel. She knew she was having problems. She had just watched her sister pass away and she knew how bad she had gotten. I didn’t have the guts to say the A-word in front of her. I could say she forgot, but not that A-word. It was worse than any curse word I ‘d ever said. You see, we had given that word SO much power. We let it own her. She wasn’t Lizza, wife, widow, mother, grandmother or friend. She had become an Alzheimer patient.
It took me a while to figure that out. We spent months just waiting for the crazy to pop out at anytime. Like one of those Jack n’ the boxes that you wind up. Which would come out, regular mom or crazy mom. It turns out that she just became sadder mom. She became sullen, unhappy, complained all the time. But, looking back she had way to many changes way to fast! She had no clue where she was at. She had no clue where her belongings were at. She has never asked me for anything. She would rather die than to let her children know she needed something. So the ONE time… the ONLY time she needed me to save her…and I can’t.
Remember to:
Appreciate the good, laugh at the crazy, and deal with the rest.
I love you momma!
PART 2 OF THE CAREGIVERS SERIES “HOW WE GOT HERE”.
STAY TUNED FOR PART 3!
Kungphoo says
June 30, 2014 at 9:37 amBecause of all the knowledge you have given me on your blogs.. I have a friend whose mother seems to be at the begginging stages.. Whenever i read your blogs, i then email or speak to her something new to look out for. It seems she is going through a similar thing now.
Rena McDaniel says
June 30, 2014 at 11:55 amHaving someone like you in her life can make all the difference in the world. I am so glad to be any help I can but I am definitely not an expert. I just write what I feel and what I see happening before my eyes. If you or your friend need anything or just someone to talk to they or you can always email me at rm29303@gmail.com
Samantha Angell says
June 30, 2014 at 10:59 amI think its so great that you and your Mom have had such a great relationship. Lucky for you and her to have that, especially in challenging times.
Rena McDaniel says
June 30, 2014 at 11:56 amYes Samantha it does make it all very special. I love her so much!
Diane says
June 30, 2014 at 11:13 amThe feelings of pain and uncertainty in your posts are just numbing. But the information is absolutely priceless. I understand what this is costing you!
Sharing with a couple of friends . . .
Rena McDaniel says
June 30, 2014 at 11:58 amThank you Diane your support means more to me than you will ever know! This is a very painful series for me but hopefully the ends justify the means and someone somewhere will realize that they are not alone.
Haralee says
June 30, 2014 at 11:29 amYou write so beautifully about this heart wrenching disease. Watching my own 92 year old Mother become a different person in her dementia, I understand what you do and I admire your courage and candor.
Rena McDaniel says
June 30, 2014 at 12:00 pmThank you so much Haralee, it is because of all the support I have gotten from people like you that makes me continue. I remember feeling so alone. It was the scariest feeling in the world and now I know that there are people out there going through the same things and they have survived. Sometimes that’s all it takes.
Cindi Schultz says
June 30, 2014 at 12:07 pmMy parents are still relatively healthy but my grandparents – 3 of 4 – needed caregivers at a point in their lives. It was hard as a younster to not understand the difficulty of such a big undertaking. Thank you for your openness about your experience.
Rena McDaniel says
June 30, 2014 at 12:29 pmUnless you are there on a daily basis there really is no understanding it. I changes on a daily basis! Thank you Cindi!
Paula Parker says
June 30, 2014 at 12:19 pmI am always amazed at the beautiful gift you give your mother. It’s amazing how strong we really are. Thanks for sharing your story.
Rena McDaniel says
June 30, 2014 at 12:31 pmThank you so much Paula. I never thought of myself as strong, just doing what has to be done. I cry, I get mad, I get frustrated but even then I love my mom and just want to do what is best for her.
Carol Cassara says
June 30, 2014 at 12:44 pmYes, if I could go back to the time of my mother’s illness (not dementia) I would give care differently. But we do the best we can.
Rena McDaniel says
June 30, 2014 at 1:03 pmThat’s all we can do Carol our best! Thanks for sharing this!
Magdalena says
June 30, 2014 at 12:48 pmNo one really understands what goes through a care givers world. We all have it in us – but it takes a special kind of love to honour this calling. Thanks for sharing.
Rena McDaniel says
June 30, 2014 at 2:29 pmYou do what you have to do when you have to do it. When it is a loved one it makes it that much more emotional on both ends of the spectrum.
Mrs. Mashed Up says
June 30, 2014 at 1:00 pmWow, great peace. My dad might be in a place soon where he’ll need a care giver. I hope I will approach it with as much love, and balance, as you.
Rena McDaniel says
June 30, 2014 at 2:29 pmThe most important lesson I have learned is that I am not alone as I thought I was in the beginning. Thank you1
Kira T says
June 30, 2014 at 1:02 pmThis is the first time I’ve been to your blog. I can’t even imagine the pain you and your mother are going through. It’s an unimaginable struggle and you both are lucky to have each other. I think your point about letting the disease define her is so important. Thank you for sharing such a personal struggle.
Rena McDaniel says
June 30, 2014 at 2:31 pmThank you for reading Kira! It is not all painful and sad we do manage to have a few laughs along the way too! Hope you stick around to read those also!
Rena McDaniel says
June 30, 2014 at 5:34 pmWell thank you very much! What a nice thing to say. I hope you come back often.
Marcia @ Menopausal Mother says
June 30, 2014 at 5:57 pmI cannot even begin to imagine what you are going through but I think it takes a lot of courage to share your thoughts here. Tweeted. Sending you big hugs.
Rena McDaniel says
July 8, 2014 at 2:35 pmThanks so much Marcia. If I didn’t love her so much I doubt I would have the strength to do it. But love makes us stronger.
Crystal says
June 30, 2014 at 6:35 pmWonderful post! I did know someone with Alzheimers. She did not want her family to see her slipping away either. It broke our hearts to lose her. 🙁
Rena McDaniel says
July 8, 2014 at 2:36 pmIt is such an all-encompassing disease. It takes everything from the sufferer and leaves nothing behind but sadness.
Rosey says
June 30, 2014 at 6:50 pmI think it’s so wonderful that your relationship w/your mom gets such a round of praise here. I am lucky to talk to my mom once a month, but I still like it when we do. I’m sorry that you’re facing such a difficult challenge. 🙁
Rena McDaniel says
July 8, 2014 at 2:37 pmThanks Rosey. Mother’s are the ones that give us life, teach us and love us unconditionally so when the time comes to take care of them that is what you do.
Rach @ EazyPeazyMealz says
June 30, 2014 at 8:58 pmSuch a hard disease to watch progress. You are awesome. I think caregivers get too little credit.
Rena McDaniel says
July 8, 2014 at 2:38 pmThanks so much Rach! I don’t know how people do this for a living it must take very special individuals. I love my mom it is that simple for me.
Joanna Sormunen says
June 30, 2014 at 9:51 pmPeople always say that caregiving is a vocation, and use it as an excuse to not value it with money, or not pay people enough. But caregiving is really a vocation. And it really needs to be recognized more, especially the true caregivers!
Rena McDaniel says
July 8, 2014 at 2:39 pmYes it does! It is a very hard job that has to be done. It is very important work and also the hardest but people don’t often think about the caregiver just the patient.
Jaime says
June 30, 2014 at 11:29 pmCaregiving is a tough, caring and wonderful job. My daughter’s caregiver is like family to us! Thank you for sharing your experience
Rena McDaniel says
July 8, 2014 at 2:40 pmThat is wonderful because they do become like a member of the family. I haven’t had to go that route yet but when we do have to call in help I hope I find someone like this.
Mary Ann says
July 1, 2014 at 12:32 amYou may not be able to save her, but you are there for her supporting her and loving her, and that’s all you can do. I am happy to hear that you have such a special bond with your mother.
Rena McDaniel says
July 8, 2014 at 2:41 pmThank you Mary Ann. I don’t know if it’s the mother/daughter relationship or the fact that I am the only girl with 4 brothers but we have always been close.
Michelle F. says
July 1, 2014 at 1:13 amWow I love this “Remember to Appreciate the good, laugh at the crazy and deal with the rest” . I have to share this with my mom when my grandma is having a bad day.
Rena McDaniel says
July 8, 2014 at 2:43 pmThat’s the only way to get through it Michelle. I have cried buckets but it doesn’t change anything and when I am having a hard day this is what I say to myself and it seems to get me through the rough times.
Hilary @ The RNY Life says
July 1, 2014 at 2:27 amI love how open you are in your posts. I remember watching a documentary about this disease on HBO and it was heartbreaking. My aunt (my grandpa’s sister) had it before she died. The last time I seen her she didn’t recognize anyone. Her daughter had to explain who we all were.
Rena McDaniel says
July 8, 2014 at 2:44 pmThat is what I fear the most I think…the day she no longer recognizes me. That day will come and I know it in my head but maybe not in my heart.
Becka says
July 1, 2014 at 5:06 amI can’t imagine.. My grandmother had it and she would often call and talk about things that happened years ago as if they just did.. She didn’t live long enough to suffer from the advanced stages and passed due to cancer but it is a hard situation to see someone you love and relied on to be gone but still here at the same time.
Rena McDaniel says
July 8, 2014 at 2:45 pmI am so sorry for the loss of your grandmother. It is a sad disease but having lost so many to cancer I don’t know which is worst. They are both horrible.
Rebecca Swenor says
July 1, 2014 at 7:43 amYou brought up a great point with the changes to fast. Normally that would be the last thing on your mind. I love reading your blog. I am preparing for the time when it will be me. Thanks so much for sharing.
Rena McDaniel says
July 8, 2014 at 2:54 pmThanks Rebecca I am so glad I can help. At the rate that this disease is hitting we will be caregivers or at least know a caregiver in our lifetime. I try to offer tips make things a little bit easier.
FamiGami says
July 1, 2014 at 10:35 amThis is such a devastating story. You have the strength many others wish they could muster. I wish you only the best.
Rena McDaniel says
July 8, 2014 at 2:55 pmThank you so much. I want to express the fact that while it is a devastating disease I would still choose to do this because she is my mother.
Joyful Gifts by Julie says
July 1, 2014 at 1:46 pmMy Mom had Alzheimer’s and my Dad just could not handle it. He passed away before she did. I really think my Dad died of a broken heart bc my Mom didn’t know who he was after over 55 years of marriage. We also had trouble saying “the A word” especially around Mom. We didn’t want her to know what was wrong I guess. Very sad times. Blessings for you.
Rena McDaniel says
July 8, 2014 at 3:14 pmThat is such a sad story. I am so sorry for your loss. Thank you for your support.
Ann Bacciaglia says
July 1, 2014 at 2:57 pmI am a widow and your moms quote “Choosing one great love over many partial ones” really hits home for me. Such a true statement.
Rena McDaniel says
July 8, 2014 at 3:15 pmSometimes one is all we need or want. I don’t think if something happened to my husband I would try again either. I am sorry for the loss of your husband.
Natalie says
July 1, 2014 at 4:21 pmI love reading stories about your family, your mother sounds like an amazing woman. It’s always nice to have a great relationship with your mother, something to cherish.
Rena McDaniel says
July 8, 2014 at 3:16 pmYes it is Natalie. I have always been close to my mom especially after losing my dad at the age of 15. Thank you so much.
Liz Mays says
July 1, 2014 at 4:32 pmSeeing the decline would be incredibly painful. I can’t even imagine. 🙁
Rena McDaniel says
July 8, 2014 at 3:18 pmIt is painful but the only thing you can do is deal with what comes. Thanks Liz.
Cathy Chester says
July 1, 2014 at 7:52 pmYou are a very special lady, and one who cares deeply for her mom. That touches my heart.
Rena McDaniel says
July 8, 2014 at 3:19 pmThanks Cathy that means alot to me.
Kath Rivera says
July 1, 2014 at 11:05 pmYou’re a precious gift to your mom. I’m happy that you took the initiative to love and care for her unconditionally. Since you’re the only daughter, I guess the relationship you had with your mom is very deep.
Rena McDaniel says
July 8, 2014 at 3:20 pmThanks Kathy it is very special. It makes it harder and more painful sometimes but it still has to be done.
cococute life says
July 2, 2014 at 1:10 amFamily are the only one who we can turn too in anytime especially on our most down time. I am so glad to read a story like this a great family relationship and this is really needed especially in our generation today. Family is the most basic part of the society and it is where the community will evolve if most of the family does not value the virtue of this then the community will reflect it all.
Rena McDaniel says
July 8, 2014 at 3:22 pmAlot of people today don’t feel like this. My lung doctor is from the Philippines and he explained the family relationship to me there because he knows what I am dealing with. He said he has patients that never see or hear from their loved ones. I can’t imagine how lonely and sad that would be.
Lana says
July 3, 2014 at 7:18 pmOh, Rena…I’m SO sorry you’re going through this. Having seen my mother in law through this, I can completely relate. You are such an amazing daughter and deep down your mother is very proud of you.
Rena McDaniel says
July 8, 2014 at 3:24 pmThanks Lana. It’s so hard sometimes because she doesn’t realize all that has to be done. She gets agitated so easily these days and of course that adds to my stress level. I still wouldn’ t let anyone else do what I am doing for her.
Karen @BakingInATornado says
July 6, 2014 at 10:03 amI can literally feel your pain as you mourn the decline of the relationship you shared with your mom. But to me what is most heart wrenching is hearing your guilt at not being able to stop it from happening.
Rena McDaniel says
July 8, 2014 at 3:26 pmWhen you care for a parent with Alzheimer’s guilt becomes something you deal with on a daily basis. It is easy to explain it in my head but my heart doesn’t always get the message. Thanks Karen.