Follow
Share

There are a lot of things the me from today wishes I could have told the me from 10 years ago. But if I could only tell myself one thing, it would be to tell myself that health events change people's personalities, not just their physical self. And that although those changes can be heartbreaking, new personalities can emerge after one of these events and you can create new memories with and generate new love and affection for that new person. It is hard, and you will always miss the person who you care for used to be, but that doesn't mean there won't be a new person to appreciate.

What one thing would you tell your prior self to help guide you through the caregiving process, whether practical or otherwise?

Happy Christmas and New Year's to All! May your cargiving be as easy as possible...

This discussion has been closed for comment. Start a New Discussion.
My golden nuggets of advise after being a caregiver and now a co-caregiver with my sister for our mother whose health is rapidly declining would be 1. Take one day at a time, 2. Don't take much personally-we have found that our mom becomes very critical during those times when she feels the worst and usually apologetic when she feels a little better, 3. "keep calm and carry on", to quote a quote that I have seen a lot lately, and 4. take care of oneself both physically and emotionally. I have been increasingly involved in my mother's daily life over the past 5 years due to her degenerative spine disease, resulting use of medications to manage the pain, and overall declining health. I am blessed that my sister moved to Florida from across the country in late August, is living with my mother now, (I live several doors down the street), and we have become co-caregivers, sharing the responsibilities, and the heartache of watching the woman that we knew as a strong, self sufficient , and brave woman decline. My mother is often angry at the world including the medical community who she feels has failed her, and my sister and I are quite often the targets of her frustration and anger, simply because we are the ones who are there. I know this is typical of the elderly who have lost quality of life, independence, and control over almost every aspect of their lives, but it still feels hurtful at times. It is good to have someone to share the physical, and emotional challenges with, and also good to have a site such as this one.
(3)
Report

My nugget would be not to count on medical providers to keep track of your loved one or know everything about their medical situation. I can't tell you how many times my mom's pro-time results (for her coumadin levels) have fallen through the cracks at the doctor's office. I have to follow-up regularly to get the answer to her changing dosages. Sometimes when her blood is way too thick or thin.

And I've learned that doctors don't know everything. Do your own research, ask around, talk to pharmacists and nurses to get the most information you can. And stand up for your loved one. You know them better than any doctor and you know what their "normal" is. Your knowledge and advocacy can save your loved one's life.
(5)
Report

When my Mother was in the ER a few weeks ago, nothing serious, she was dehydrated again, I was talking to the male Nurse that was doing the CT scan. I told him that Mom having Dementia was a lot like "Groundhogs Day" or "50 First Dates". Mom doesnt remember what I said 5 minutes ago let alone yesterday. Every day is a new day, a blank slate. I get huffy sometimes when I have to repeat things 4 and 5 times at a soft yell, and keep saying the same answer again and again, but then I slap myself and realize that it isnt her fault. Sometimes we crack each other up with a little humor. One time I was dishing up "a little ice cream" and found the mellon baller. I scooped the smallest, tiniest scoop of ice cream and brought it to her. She laughed and laughed. She thought it was great. Sometimes I have to remind myself to not correct her, if she thinks its gonna snow in Southern Calif, then let her think it. I just tell her that we can make snow women when it does snow.
(6)
Report

Seek the knowledge of an ELDER CARE ATTORNEY before it's too late!!! You will avoid so much confusion and heartache..
(4)
Report

My mom has ALZ and one thing I learned early on at a support group is that logic doesn't work anymore. It's so difficult to understand/remember/work around that, especially in the beginning, but life will be so much better for the caregiver and, therefore, the one being cared for if we can remember that. Thanks for the all the good reminders and all the best in the new year.
(4)
Report

Iadee--Thank _you_! I learn so much from all the different participants on this site!

Captain--that's such a great one. It's so easy to dismiss our elders, and it's so important that they continue to make active decisions for themselves so that they can feel independent and in control. And as you say, they have a right to their opinions and who knows what they know that we don't!
(4)
Report

I fight hard to keep at the forefront of my mind, during the times of anger ( Her at me, me at her) That it is the DISEASE we are mad at, not each other. And tell them you love them every day, and ALWAYS kiss them goodnight.
(6)
Report

NotHisFault - Your name is an important truth for us caregivers. It's hard to remember, but I am starting to remember it sooner more often.
(7)
Report

Good humor will see you through! I'm blessed that my wife has such a good sense of humor! But, she will still go into bouts of complaining and anger. Often I respond by saying, "Grumble, grumble, grumble." This usually brings a smile and a change of mood.
(5)
Report

My nugget......detach with love. It took me over a year and finally this very advice from a dear friend who is an Rn and had taken care of both her parents, to realize and accept that no matter how good my intentions were, my MIL would not or could not appreciate them. I struggled to be ever present, ever ready, ever prepared, anticipating her needs, wants and desires only to be resented and made to feel as if I were trying to run her life. She refused to do the things that needed to be done to keep herself healthy and no matter how I approached it all I got was a pissy look and an " I'll do it however I dam...well please." attitude. She is now in an ALF just five minutes away but a world away as for my own health and peace of mind. I still take her to all her appointments and get her meds,etc. what I no longer do is walk up to her apt. ,which is on our property, four or more times a day to check on her and see to her needs. Back to my nugget....I had to learn to let go of the "need to be and do everything" ( detach) and love her anyway. As some have said on this thread, Someday that person may be me needs the care and understanding. Laugh often, it helps a lot.
(6)
Report

My advice to myself would be: not everyone is cut out to be a caregiver. That's me.... I never had any children to practice on or any siblings to learn about family disagreements.... my life was my career.
(3)
Report

I haven't found the golden nugget yet, but reading these words brings tears to my eyes. That is a good thing because I always hold everything inside. This website has been so helpful to me! I hope this new year will be good for all us caregivers and our loved ones!
(8)
Report

One day at a time.
(4)
Report

I learn from everyone on AC daily..
(5)
Report

I would go back and tell myself not to drive yourself crazy expecting siblings to help out with the caregiving. It will only make you more stressed than you already are.
(7)
Report

I am only four years into caring full-time for my husband, who has later stage Alzheimer's now. If you're caring for a loved one with dementia/Alzheimer's, they just don't remember things from one minute to the next. So I think the one thing I would say is my 'nugget' (so far) is to try your hardest to just let things go, put incidences and situations behind you and move on. Early on, I would carry hurt and resentment - even though my husband had long forgot. It's one of the hardest things I'm still learning to do - but, by far, one of the most helpful.
(11)
Report

just be kind even when your brain is shorting out. the elder is not long for this world and there are no do overs. i took my mom to look at a lift chair only days before her death but she didnt like the chair being offered. upon returning to the car she started crying cause she expected an ass chewing. i told her sweetly that it was ok, and it didnt hurt to come to town and take a look to which she sweetly replied " thank you " . she was a brilliant adult smarter than ill ever be and if she didnt want the chair it was her right to decline the damn thing.
(10)
Report

AKA, I truly appreciate what you said about making new memories with what the present gives us.... my 'nugget' is to always be yourself... don't forget who we are, what we stand for, appreciate my own sense of humor.... that gets me thru some of the worst times....I see the world a little 'skewed' at times anyway... so why not lighten the load and see humor in some of it.... thanks for this thread... there will be some great comments....
(5)
Report

I just found your website yesterday and feel so blessed that I did. At this time I'm trying to fill out a VA application for admission to a VA nursing home for my dad. Hopefully, I will be able to keep him home with me for awhile longer. He is getting weaker and has 2 Nursing home stays where I work at for Rehab. Of course, problem is it cost too much to keep him there. I work full time, so he does receive Aid & Attendance so someone else can watch him during the day. His all mine on week nights and weekends. At 58 he still thinks I'm a child, telling me all the time what to do and how to do it. It's okay though, as I know one day I will miss even this interaction. Thanks for the quick answer to my question from yesterday. I know have found others here that I can support as well as get support from. May god bless each of you and your wonderful family member you care for. PS I have been working at a local Skilled Nursing facility for 12 years now.
(5)
Report

Whoops, pushed the wrong dang button. Oh well... I'm thinking we need to get going, what's the hold up? This went on for 20 minutes until we hit a passing lane. As we were zooming past the old people driving that slow car, I saw IT WAS MY GRAND PARENTS!! Oh my gosh. So my advice to that younger version of myself would be... don't get in such a hurry, because someday that is going to be YOU!! ♥
(9)
Report

About 40 years ago my girlfriend and I were coming back from the beach after going down for the day. We were both in our twenties, and I had a really fast car at the time. We hadn't got very far from the coast when the traffic started backing up. Well I'm thinking, 'LET'S GO ALREADY'
(0)
Report

Thanks, Lisa! I've often thought that there are so many people on this site with such great experience that if we all pooled our knowledge and wrote a book it would be just about the greatest guide ever to how to be a caregiver and how to laugh while doing it! :)
(7)
Report

My golden nugget would be to accept those things I cannot change.
(9)
Report

AKA and Jinx, I love both of these, thanks! My mother moved from four states away, to one mile away from my house, coming on 10 years ago. I'm not having to care for her yet, but she's a real emotional burden and I had years of depression and confusion. When it hits 10 years I may know what my piece of advice is ;) but now I do wish I'd drawn more boundaries, more quickly, and without guilt. I was very passive to her rages and control growing up, because she was the only parent (and no one else in the house)... then I never stopped to correct the pattern since. I'd like to testify that MY reactions to her add so much garbage to the whole deal; like with 99% of people out there, you realize they aren't so much trying to mess up your world, as doing their own personal dance. I'm learning more and more to just draw a line when I'm being threatened, then leave her alone (in my mind as well). As I've made strides in this, I'm also finding several of my long-standing friendships no longer 'fit'... odd sidedish. But I'm going with it. In all things, only be with people who treat you right, they may be good people but lose the ones that don't feel like joy most every time you see or talk to them. Be well, all you awesome caregivers! Lisa
(10)
Report

I had no idea how much humor can help! my husband and I can get a little short with one another. If I can stop, breathe, and call him a poopyhead, he laughs and we both feel better. My daughter spent 5 minutes mocking him because he always says, "Hmph! Why don't we ever have any tissues around here?" while sitting with his right elbow resting on three boxes of tissues. She danced around holding a box of tissues beside each ear, complaining that there were no tissues anywhere! No sensitivity at all, just open mockery based on a VERY loving relationship. He was holding his sides laughing along with us.
(9)
Report

This discussion has been closed for comment. Start a New Discussion.
Start a Discussion
Subscribe to
Our Newsletter