Things I wished I had known when I became a caregiver
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Things I wish I had known when I became a caregiver
I was thrust into the caregiver role on April 4, 2007, the day my darling father died. My parents had moved to Arizona 25 years before but came back home to Maryland every summer. 12 years before, they sold their house, I sold my townhouse and, together, we bought an old farmhouse on 2 acres of land. Our own little nirvana.
When dad died, mom just came home to stay - and, for that, I'll be forever grateful. She's now 95 and the pride of my life. My journey becoming a caregiver has so enriched my life that I wouldn't have missed it for anything in the world. I do, however, wish there were some things I knew right off the bat. The learning curve into my caregiving career has been rather steep. I'm hoping that this lens will help others who are in the same situation and can reap a few benefits from the stumbling path I've taken.
UPDATE: My mom fell in November 2011 and broke her hip (actually, she had a pathological fracture so her hip broke and then she fell) and there's so much more to do now that, at time, I'm floundering. There's even more I wish I'd known about caregiving before I took on this job!
UPDATE: 3/30/12 - My darling Mom passed alway peacefully on Feb 15, 2012. I'm updating this lens with information I gleaned during the last two months before she died. I learned a wealthy of information about those last 8 weeks.
When dad died, mom just came home to stay - and, for that, I'll be forever grateful. She's now 95 and the pride of my life. My journey becoming a caregiver has so enriched my life that I wouldn't have missed it for anything in the world. I do, however, wish there were some things I knew right off the bat. The learning curve into my caregiving career has been rather steep. I'm hoping that this lens will help others who are in the same situation and can reap a few benefits from the stumbling path I've taken.
UPDATE: My mom fell in November 2011 and broke her hip (actually, she had a pathological fracture so her hip broke and then she fell) and there's so much more to do now that, at time, I'm floundering. There's even more I wish I'd known about caregiving before I took on this job!
UPDATE: 3/30/12 - My darling Mom passed alway peacefully on Feb 15, 2012. I'm updating this lens with information I gleaned during the last two months before she died. I learned a wealthy of information about those last 8 weeks.
A purple star!
Awarded Sept 1, 2011
I write a lot of different type lenses on Squidoo but my caregiving articles mean the most to me. They don't make much money but I do know that they help others who might be trekking my same path and, for that, I'm forever grateful that I can write. For a full directory of my caregiving lenses, click HERE.
The Complete Eldercare Planner, Revised and Updated Edition: Where to Start, Which Questions to Ask, and How to Find Help
Someone bought this book from this article (thank you!) and I was just thumbing through the Amazon copy. I wish I'd bought this book! Better yet, I wish I'd written this book! It appears to be very comprehensive and will greatly help organize a new caregiver.
The Complete Eldercare Planner, Revised and Updated Edition: Where to Start, Which Questions to Ask, and How to Find Help
Amazon Price: $10.08 (as of 05/30/2012)
Check out this book! With a section called "Caught off guard: suddenly you're a caregiver", this book would have been quite helpful to me in my early days of caring for mom.
1. I wish I had educated myself about caregiving
before I "took" the job
In my quest to become the best caregiver for Mom, I've purchased or borrowed many books about caregiving but, I didn't think of this until just last year. At that point, I was into my caregiving career for 4 years! Don't make the same mistake I did - get a few books and read them cover to cover the minute you become a caregiver, or even earlier if possible.
Get online and join a few good caregiving support sites - there's a few resources for you below and here's an article you might like to read too:
Everything about senior citizens.
Get online and join a few good caregiving support sites - there's a few resources for you below and here's an article you might like to read too:
Everything about senior citizens.
Don't skimp on the books and don't underestimate the amount of knowledge you'll get from reading other caregiver's stories.
The below are top selling books on Amazon.com about aging.
Some of my favorite websites about caregiving
Online caregiver support groups have made me feel much less alone as I walk this path. I'm also reminded daily how lucky I am to care for such a loving Mother as I could be way less lucky.
- HelpCare.org website
- This website has some wonderful articles about how to avoid caregiver burnout. With a large and participating audience, you'll find loads of information to make you a more competent caregiver.
- CareGiver.com
- The Caregiver.com website is a great resource for any caregiver. On this website, you'll find ideas for meals and how to make mealtime more enjoyable, tips for caregivers, along with an area where you can find local resources.
- Resources for caregivers of aging parents
- I wrote this article to put the resources for people caring for their aging parents in one spot. It's worth the read.
2. Being there is the most important thing
My friend, Sharyn, sent me this excerpt from the AARP magazine regarding caregiving. It's things like this that make me document the value of friends in this article (click the blue link).
The question was "What do you wish you knew when you first started caregiving that you know now?
The answer was by CindyL53. She wrote:
"I wish I had known that I didn't have to fix everything...that I didn't have to heal what was wrong...that I didn't have to worry about not being perfect. I wish I had entered this journey from a place of clarity rather than desperation of trying to always be perfect. The truth is that family caregivers forget the importance of being an advocate on behalf of someone who cannot advocate for him/herself any longer. There is power in knowing that and it frees you from all the guilt."
And, Cindy was right on. When Mom first came to live with me, she was deep in grief for the death of my father. I didn't have time to grieve as I was busy trying to figure out how to keep her alive. I tried to cheer her every day, to make life perfect again. I tried to make her laugh and pass the days filled with things to do. I now know that grief had to run its course and I should have just been there for her. There were nights I did just hold her and try to let her unload her grief on me but she didn't want to hurt me. That's the type of mother I have, even to this day. She's still more concerned about me that she is about herself.
I wish I had known, in the beginning of my caregiving career, that just being supportive was enough. I wish I had not forced her to see a grief counselor; that only made her angry and made her feel like she didn't have choices any longer.
The question was "What do you wish you knew when you first started caregiving that you know now?
The answer was by CindyL53. She wrote:
"I wish I had known that I didn't have to fix everything...that I didn't have to heal what was wrong...that I didn't have to worry about not being perfect. I wish I had entered this journey from a place of clarity rather than desperation of trying to always be perfect. The truth is that family caregivers forget the importance of being an advocate on behalf of someone who cannot advocate for him/herself any longer. There is power in knowing that and it frees you from all the guilt."
And, Cindy was right on. When Mom first came to live with me, she was deep in grief for the death of my father. I didn't have time to grieve as I was busy trying to figure out how to keep her alive. I tried to cheer her every day, to make life perfect again. I tried to make her laugh and pass the days filled with things to do. I now know that grief had to run its course and I should have just been there for her. There were nights I did just hold her and try to let her unload her grief on me but she didn't want to hurt me. That's the type of mother I have, even to this day. She's still more concerned about me that she is about herself.
I wish I had known, in the beginning of my caregiving career, that just being supportive was enough. I wish I had not forced her to see a grief counselor; that only made her angry and made her feel like she didn't have choices any longer.
My parents had a 65.5 year love affair...and it showed.
3. I wish I had known about replacing the feet on a walker
I now know that I should have forgone the tennis balls and just bought replacement glides for the bottom of the walker. It glides much more smoothly and is no longer scratching my hardwood floor. Note; replacement glides come in different sizes so take off one of the existing walker glides and measure it before ordering a new set."
Handicap walker articles
The below are articles in a niche I've started to write about - Handicap walkers. As mom's needs change, we might have to move from a 2 wheel walker into a different type. So far though, so good.
- Handicap walkers
- This article gives an overview of 2, 3 or 4-wheel handicap walkers. It's your first place to go for general information.
- Duro-Med Steel 3 Wheel Rollator
- A product review of the Duro-Med Steel 3 Wheel Rollator - for people who don't need quite the stability of a 2 wheel walker.
- A review of the Hugo Elite Rolling Walker With Seat, Backrest, and Saddle bag
- The Hugo Elite Rolling Walker is what it says - it's certainly elite!
Walker supplies
Any senior citizen who is unsteady on his or her feet should have a walker. Mom's walker has saved her from many a fall and, luckily for me, she doesn't mind using it. I have found some good things to use to make the walker more useful, the best of which are below.
4. I wish I was more aware of the value of hospice
My mom is now enrolled in hospice but that doesn't mean that she has 6 months to live. It just means that she has a "final diagnosis" of cardiac heart failure, a pretty typical finding in someone approaching 95.I had no idea of the value of hospice, having no experience with the system. Today, i have a full team of professional nurses, social workers, and volunteers behind me. If Mom wakes up with a new ache and pain, I only have to make a quick call to get instruction about how to care for her. I couldn't be more pleased to be relieved of being the one making all the decisions.
Items to educate you about hospice
5. I wish I had known that sudden onset confusion is not necessarily "normal" in the aged
My Mom's mental capacity changed in just one short week. She went from being a vibrant, fun-loving, cocktail-swilling (one only), participant in conversations with friends to a sullen, confused old lady. I did take her to her doctor who assured me that these symptoms were 'just what happens.' Don't buy that. it's not necessarily "just what happens" when it's a very sudden onset.
During a hospitalization last month, my Mom was diagnosed with pneumonia. Pneumonia doesn't necessarily show symptoms in the elderly so there was no coughing, wheezing, fever or chills. There were no signs that she had pneumonia at all. After a 7 day stay during which she was on heavy duty antibiotics, she was as good as new. My mom was back! And, that hospitalization was a total blessing in disguise as it was the impetus for the enrollment into hospice.
So, if your loved one shows sudden onset confusion, get online and check out some causes. In fact, here's an article I wrote about the Causes of Confusion in the Elderly. And, here's another article about the Signs and Symptoms of Pneumonia in the Elderly. Do yourself a favor and read both of these articles.
During a hospitalization last month, my Mom was diagnosed with pneumonia. Pneumonia doesn't necessarily show symptoms in the elderly so there was no coughing, wheezing, fever or chills. There were no signs that she had pneumonia at all. After a 7 day stay during which she was on heavy duty antibiotics, she was as good as new. My mom was back! And, that hospitalization was a total blessing in disguise as it was the impetus for the enrollment into hospice.
So, if your loved one shows sudden onset confusion, get online and check out some causes. In fact, here's an article I wrote about the Causes of Confusion in the Elderly. And, here's another article about the Signs and Symptoms of Pneumonia in the Elderly. Do yourself a favor and read both of these articles.
Things I intuitively knew when I became a caregiver
Even though I chose not to have children, loving many dogs in my lifetime did prepare me in some way for being my Mom's caregiver. My dogs gave me just a modicum of mothering skills which have come in very handy.
I've been told by hospice workers that I'm an intuitive caregiver so I guess I must have been doing something right. The below are things I just figured out by myself along the way.
I've been told by hospice workers that I'm an intuitive caregiver so I guess I must have been doing something right. The below are things I just figured out by myself along the way.
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1Allow your loved one to make their own choices when possible. Being elderly and dependent on others is a tough thing. My Mom says that aging is not for the faint of heart. She also says she no longer buys green bananas but that's beside the point...
When at all possible, allow your elderly loved one to make their own decisions. For example, always give them at least 2 choices for meals and let them decide which they prefer. I also have become a pretty good cook in the older type of dishes that Mom had as a youngster, such as matzo ball soup, beet borsch, brisket, and potato pancakes. -
2If your elderly love one becomes angry or combative, try not to take it personally. Anger may be a natural side effect of losing control or feeling like a burden on others. I'm so lucky in that my mom is generally a happy person and quite easy to care for. But, I have periodically been on the receiving end of an outburst. I just let it happen and come back later to reassure her that I love her.
Especially towards the end of life, personality changes may become more evident. This happened to Mom. Even those she loved would be asked to leave the room as stimulation of any type became irritating to her. I tried to explain this to others but they "just didn't get it." I did and that's all that mattered.
To see more changes you might expect toward the end of life, read my other article: Death and Dying - dealing with the restless patient. - 3Assure your loved one that you are pleased to be in the role of caregiver. I make sure to tell my mom every single day that I love having her with me. Just recently, she became upset with me and threatened to leave. I said "fine, where are we going?" She knows that she's not going anywhere without me and she's very glad of that fact. I tell her every day and every night how much I love her. And, I do.
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4Have different people come in for dinners, happy hours, or just visits. I'm blessed with the best friends in the world - I honestly wouldn't know where I'd be without the support of these loving friends whom I consider family. Mom is equally blessed as they all adore her and stop by periodically just to check in.
I also like to have brunches once in a while just to brighten a Sunday morning. It's a great way to catch up and occupy my mom and me for a few hours. I've also figured out that I don't have to do everything so my friends bring along a dish to share. - 5Take care of yourself. Caregiver burnout is rampant among those who take on the role and I'm not unfamiliar with the syndrome. I just have to get away periodically, even though my vacations take a toll on my mom. I try to get out every 3 or 4 months for at least a weekend so I can recharge. I used to feel guilty about my absence as I know it's hard on my Mom but, after I figured out that she's just have to put on her big girl pants, have her tantrum, give me the cold shoulder the day I got back, I was fine with it.
- 6You need to have a life also. My oldest brother put it best. He said that I'm doing more than a full time job as, when one has a normal job, one gets to go home and recharge. I am home and I'm doing 3 full time jobs. I knew at the very beginning of my caregiving career that I needed paid backup so have hired some good and some horrible caregivers. Make sure you have backup resources. And, pay your caregivers well (I generally pay between $15 and $20 an hour) so they'll want to return. I also don't like caregiving agencies, preferring to get personal references and hire my own caregivers.
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7If you're in a relationship, have an honest conversation with your significant other about your priorities.
The year my mom came to live with me, my marriage dissolved. Now, this wasn't a bad thing for either me nor my husband as we're much better off on our own. I, however, didn't stay alone too long, much to my dismay. I was sort of hoping to have a year or two to date and experience different things but, alas, John walked into my life just 3 short months after I separated from my ex. And, as the saying goes, he had me at hello. I met and fell in love with the most wonderful man in the world..
When we started dating (in fact, I think it was on our first date), I explained to him how my life worked - Mom was and would remain my priority. This man is so wonderful that he has always accepted this axiom and accepted and grew to love my mother also. There's nothing more precious in my world than watching John kiss my mom's hand every night before bedtime. She just glows. -
8I understood the need for bathroom safety right off the back. With a medical background of 20 years, I immediately set about to make our bathrooms handicap accessible (as much as possible).
Here's an article I wrote about Handicap bathroom needs for a senior citizen. The article is not only geared toward senior citizens but really for anyone who is mobility challenged.
John loved Mom almost as much as I did and she loved him right back
6. I wish I had known about TV ears
I always have had the best friends of anyone around and they're invited to picnics, brunches and dinners at our house frequently. But, there are a lot of time when Mom and I are alone. During these times, the TV is my Mom's favorite pastime but the noise kills me sometimes. I can only listen to so many "Who's the baby's daddy" shows before I get irritated. Not a good thing.
Enter TV ears. These things save my life - they allow the TV to be muted but Mom can hear it loud and clear simply by wearing the TV ears. I highlyi> recommend these to save your own sanity.
Check out the link below for more information. Note: they've dropped $15 since I bought them but they were still worth the higher price.
Enter TV ears. These things save my life - they allow the TV to be muted but Mom can hear it loud and clear simply by wearing the TV ears. I highlyi> recommend these to save your own sanity.
Check out the link below for more information. Note: they've dropped $15 since I bought them but they were still worth the higher price.
7. Things I wish I'd know before I was a caregiver...
...Pathological fractures
On November 11, 2011, my 95 year old Mom, Gertie, suffered a pathological fracture and a subsequent fall. Yes, that's the right sequence. Pathological fractures are actually broken bones that happen BEFORE the fall. In fact, the fall might not have happened if Mom's hip bone hadn't broken.Anyway, there's nothing you can really do about pathological fractures except perhaps getting frequent xrays for those at risk. Come read more about pathological fractures in my Squidoo article: Adjusting the elderly to rehab for a broken bone.
8. Things I wish I'd know before I was a caregiver...
The hardest part is letting go
My Mom is suffering from TIAs (transient ischemic attacks) which are very small strokes. There's nothing that can be done about this - it's just what happens with the elderly sometimes as they approach the end of the road. Symptoms of TIAs include personality changes, difficulty breathing, difficulty in doing daily tasks, exhibiting a fugue like state, or just plain old being out of it.I wish now that I had had "the talk" with my Mom earlier. Sometimes, people hang onto life because of unfinished business. As we approach the end, I knew it was important to let her know that I'd be ok once she was gone. I told her that she is the best mother I can even imagine, I reminded her of the triumphs in her life, and I reminded her of a bit of sadness. I told her it was about time for her to go join my darling father and my sister who was taken much too young.
It's very important to have this closure. I hope, if you're a caregiver, that you heed my advice and have the talk. And, I pray for your and my eventual recovery from this very long path we've walked. Death is just a part of life.
9. Things I wish I'd know before I was a caregiver...
It's ok to feel relieved when the job is over
I promised my Dad and always knew that I'd have Mom with me as long as I could ensure her safety. The last months were difficult for all involved; there was a lot of scheduling relief caregivers, sleeping on the sofa even when I had a night caregiver there, standing by her bed the last 2 hours. But, we were lucky. Mom died in our home.I held my Mom's hands as she took her last breaths on earth. I felt her spirit leave us, and I knew it was over. And I felt....relieved. And immediately guilty that I felt relieved. But, she had struggled for days just to exist, she wasn't aware of much, and she was ready to go. I was relieved that her life on this earth was no longer a struggle.
And, I felt relieved for myself. I waited for the formalities to be done and then went to bed, only rising the next day for the funeral. I still felt relieved.
I've decided that it's perfectly fine to feel relieved when your caregiving job is over. I believe my counselor would say the same thing if I asked.
Are you a caregiver?
I'd love to hear any comments you have about this lens, good or bad. You can leave comments even if you're not a Squidoo member so get on it!
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KateHon
Apr 9, 2012 @ 3:51 pm | delete
- I have read other lenses you have written about your mom and am sorry to read about her passing in this lens. I was, and still am, impressed and inspired by your joie de vivre, which I believe was passed on to you by both your parents. Thank you for such sincerity and transparency in your writing!
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Tipi
Jan 26, 2012 @ 11:20 pm | delete
- You have immeasurable value here for those who will enter into care taking. I love how you teach others with the "wish you knews", excellent and blessed!
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spirituality Jan 26, 2012 @ 2:52 am | delete
- Your link to choosing a hospice is not working. You forgot the http:// part (always check links till you know your HTML backwards and forwards). http://www.squidoo.com/choosing-hospice-is-it-the-right-choice- Great lens.
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Alohagems
Jan 12, 2012 @ 1:58 am | delete
- I have just visit my 81 years old grandmother. She has a dementia. Very Sad...
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fugeecat
Jan 8, 2012 @ 12:47 am | delete
- This is great information for people who are taking care of others. All of the information is practicle and easy to understand.
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My other articles about caregiving
The below are a small library of Squdoo articles that I've developed regarding caregiving for an elderly parent. Click on any link for the entire article.
by gottaloveit
I used to spend most of my days caring for my adorable 95 year old Mom, Gertie; she died peacefully in my arms Feb 15, 2012.
During down times (which...
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Come visit the blog I kept for the past 5 years Mom was with me
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