How has caregiving changed you?

OMG, Cantdance, that's a pretty impressive list you have there. I really like it and I agree with it too!

I think that I have learned just how fragile our health and our lives are and how tomorrow is never promised.

Horrible things happen to some pretty incredible people, so, I try to take nothing for granted.

I am a very blessed person and thank God for my blessings every day.

We can make an enormous difference in someone else's life and never lose an opportunity to do it. Something happened to me a couple of weeks ago where I was incredibly let down and hurt by a person who claimed they loved me. I was so incredibly hurt and wanted to go home and cry, when I thought about an idea. I turned my car around and went to the MC facility for an impromptu visit. I took treats and had a nice visit with my LO and the other residents in the MC unit. They helped me, more than I helped them.

What a lovely post!


We all think at some level, that we'e invincible. Of course we're not.

Watching my mother, who has a pretty low level of EOL quality, I often think "Why? Why is she hanging on? There is zero joy in her life?"

Perhaps it's the little bit of fear in all of us that says "what if there isn't anything past this life?"

MANY bouts of CG for elderly relatives (yes, I am that go to relative) I have learned to take one day at a time and to spend a lot of time in prayer or quiet contemplation.

Understanding that I can't take my patient's pain or suffering.

Letting go, when it's time.

Love. There's never enough of that.

An act of kindness benefits both giver and receiver. It's a win-win, Sunnygirl! Thanks for that reminder!

Can’t dance,

I think you covered what a lot of us feel!

I don’t think we could have possibly ever truly understood what it is like to be a full time caregiver until we actually did it. I know I didn’t have a clue. The only thing I thought was, this is my mom, I love her. Also thought, I promised my dad I would always take care of her. We don’t anticipate how things change.

I miss being a daughter, the daughter that I used to be,
not a caregiver first and foremost.

I miss private time with my husband.

I miss being a mom to my kids. My eldest daughter is very sick, many surgeries and health issues and I have not been able to be with her due to caring for mom. My youngest is at college and I haven’t even seen her apartment yet. Both live about an hour away from me.

I miss seeing friends and doing things with them. I miss just window shopping in the mall.

I miss having a pet. But after mine died I said I don’t want to hear my mom complain and criticize how I cared for him. I adored my dog and was a great momma to him but my mom has crazy ideas at times. She thinks because she has to pee a million times a day that I had to let my dog outside a million times. She gave him people food behind my back and he’d get sick, then of course she’d blame me for him throwing up. She interferes too much for me to have a dog.

I think about how I don’t want to live as long as my mom if I can’t take care of myself.

I think about how I definitely don’t want Parkinson’s disease like she has. Her brother is 96 with Parkinson’s and doing horribly.

I miss people asking how I am. It’s natural to ask about mom and I appreciate it but I feel forgotten about and get upset at times feeling very isolated and invisible.

I learned what a great husband that I have, children too. They are wonderful in that they could be resentful. My kids adore their grandma and she adores them and I don’t want to take that away from either of them.

I learned it’s okay and natural to have good and bad days. I learned I don’t have to share or explain everything to everyone. Sometimes a hot bath with a glass of wine before bed is more helpful!

I learned to absolutely cherish good memories and share those with my mom. She smiles so big when I tell her about my favorite childhood memories.

My mom was excellent with any type of handiwork, sewing, knitting, crocheting, embroidery, etc. She could design and sew anything. Every Halloween, costume party, Mardi Gras I had the most incredible costumes. She was wonderful about asking me what I would like to dress up as and anywhere my imagination went, she made it! Along with all my clothes, except school uniforms, even my wedding gown. Honestly, she could have been a fashion designer. So yeah, I truly learned to appreciate and absolutely cherish the wonderful memories that I have.

Can’t dance,

So sad to lose beautiful memories. I wish your mom could remember those things.

My mom was an awesome cook too! It is one of the things that we both enjoy so much, to remember the ‘good old days’. I’m a good cook but there are some things that no matter how many times I make them, they will never taste as good as what she made! I tell her it was all the love that was poured into that dish and she smiles.

Betty White said recently that the key to a long, happy life was focusing on the positive and not the negative. Regards to diet, her favorite lunch is hot dogs and favorite beverage is vodka! I find that hysterical!

Well, I like hot dogs. I like vodka, prefer gin. I am working on focusing on the positive instead of negative. Not always as easy as it sounds. But I do think Betty White is absolutely precious.

Another interesting thing with Betty White was when she was caring for her husband, who had cancer, he wouldn’t allow her to tell anyone because he didn’t want anyone to feel sorry for him. He wanted to be treated as he always had been.

When he died their friends were surprised and she had to explain that he never wanted anyone to feel sorry for him. Everyone is different, huh? Some people love being the center of attention and others don’t.

Can’t dance,

I love the idea of documenting. Especially if it makes you feel better.

I know some Parkinson’s patients can develop dementia. My mom has not developed it with it and I pray she never does. I can’t pretend I know what you’re going through as a daughter of a person who doesn’t have all their facilities. It’s got to be hell at times, especially when she gets so negative. There are many on this site that know firsthand how you feel.

You know what I get frustrated with? The chronic worrying about just about everything. I think because it is so familiar to mom to worry that she doesn’t know how to relax and perhaps does not even realize that it stresses me out. I tell her I can’t afford to endlessly worry because I have high blood pressure, plus it’s just not in my nature to excessively worry over everyday stuff. I guess anything can become habitual. If she doesn’t have something to worry about it seems like she’s not happy and will find something!

Can't Dance


Your post was beautiful and you have encapsulated what so many feel. Thank you for your wonderful articulation.

Peace and strength to us all.

My mom only sewed a little, cooked very well, but the absolute best times we ever had was when my folks got us horses and mom and I rode all over everywhere. I'll never forget two times she saved me; once there was a sick rat coming toward me in the horse field, and she beat it to death with a stick before it could get near me. Another time we were riding in the fields/woods and suddenly two bulls came over the hill fighting and heading straight toward us. I was on foot picking berries and desperately began trying to mount (bareback) and couldn't; my legs were like rubber bands, so mom put herself and her beloved horse between my horse and me and guarded us from the quarreling bulls until I could get on - I never forgot that.

WOW! I'm speechless Cantdance. This is a wonderful list and I want to fully digest it but off the top of my head this is something that I have found. (first a little background)

My parents in their 90's (Mom with dementia, Dad not much better) lived independently in a small Canadian city, 2 1/2 hours from my bros and 9 hours away from me (in NY) until last Sept when I visited and arranged for them to go into LTC together. There's no one but my siblings, our spouses and grandkids and the last time Mom and Dad saw any of us was at Christmas. I am the primary caregiver doing it long-distance.

So what have I learned:

1. The fretting/prepping emotionally that I've been doing for years was worth it. When the time came, I was able to step up and get them to safety. (and altho it looked seamless it wasn't...I've been training for this my whole life!)

2. I'm surprised how on-task I've stayed. (thank goodness for lists I've made all my life, they saved me time after time)

3. I'm surprised how deep my well of compassion has become. (Mom and I have had a strained relationship for 45 years. I'm very proud of how I've cared for both of them so far)

3. I'm surprised to hear feedback from others. Until this happened I had no idea how others perceived me. My in-laws keep saying 'only you would have been able to get go up to Canada, get the applications in and have them admitted on the same day to the same room within 3 weeks' (had no idea they thought me like that)

4. I will never again underestimate the kindness of strangers. As I've taken this journey I've had conversations in stores with strangers that are alumnus to this caregivers club. I see a look, hear words of support and compassion and appreciate how many of us are walking this path. Seems everyone has a story that will break your heart and also one that warms it.

5. I'm astounded by the compassion I see in the staff at their LTC. Bless the people who work in geriatric care. I could do your job and I couldn't do mine without you!

6. I need to take better care of myself mentally. It's okay to feel stressed and it's also okay to need a relief valve and when I need a good cry (tho not often) I give myself permission by listening to this

https://www.youtube.com/watch?v=PpVXk56PhFU

Can'tdance...wow, you are an inspiration for all of us struggling with our parents. Mindset has so much power.

I appreciate this forum so much!
We all speak the same language.
I read all your responses to this question of how being a Caregiver has changed us and it is still changing us. I have learned something from each one of you.
The list that Can’t Dance shared is priceless!
A few things to add:
—- I am realizing that some people have no ability to understand, or an interest to care. You can’t get water out of a stone, so I move on accepting that so I do not unnecessarily spend negative energy...
—- I found God to be closer! Always listening, clearing my head, calming my heart!
—- Yes my mortality is very real, but, as I have told my Mom before she passed away, our responsibility
is to take care of ourselves and others, until the end. How and when the end will come is not up to us...
—- I find that I am more comfortable
saying no to people who will waist
my time or stress me.
—- I better understand the 5 languages of expressing, or receiving love ❤️:
physical touch,
acts of service,
quality time,
gifts
words of affirmation
—- I make sure I have intentionally added at least one pleasurable thing
in my day...
—- I try to discard negative feelings
as quickly as I can. They are too toxic to carry.
—- I volunteer for a multi handicapped girl, whenever I can.
I always walk out happier than I had entered, seeing the joy I brought to someone and being reminded that being a Caregiver I prefer much more than being the Care receiver...
—- I am now reading a great book,
Everything Happens For A Reason This is life and I am making the most of it!

How has caregiving changed me?

I'm married to a Vietnam Veteran.
So.
Caregiving has taught me to become an advocate for pushing the doctors, asking questions. I've learned that the VA convoluted and difficult place to navigate. AND that the VA can be very good and can be very bad.
Caregiving has tested every ounce of patience I have and then some.

I've also learned that it is just as important to take care of myself. I give myself breaks during 'his' naps. I hike every afternoon locally.
At 5am I enter a gym and work out for an hour doing CrossFit. After that I am mentally and physically ready to deal with
Dementia, Major Depression, and the list of medical issues my husband has that is getting longer and longer.

I've changed in the way that I now have to learn how to run our small farm and operate a skid steer to clear away snow so emergency crews could make it to the house.

I've learned that Pandora and ear buds are awesome when the other half can only sit in front of the flat screen TV and binge watch the same shows over and over at full volume for hours on end.

I've changed in that I don't have time for BS. Don't waste my time as a family member saying "I wish I could help you," when you don't mean it.

My husband has knocked at death's door so many times in the past 3 years that we talk about it straight forward.

I've learned that each day is a roller coaster ride. Anger, depression, glares, helplessness, demands, and sorrow can happen within just an hour.
Caregiving has taught me that to survive his caregiving, I have to care for me too or I won't make it.

And lastly? I am planning and working with my oldest son different scenarios of what may become of me in the future years.

Caregiving has made me very emotional, tearful and sad to see my partner suffering the cruel Alzeimers illness. I find it difficult to adapt to living alone and accepting that he will never get better only worse. He has limited use of his hands and I am trying to think of something that he could try and do. He has to be hoisted now as his legs have given up, so he sits in a chair all day and gets very bored. Ive always been a happy person and its not like "me" to feel this way. I find this Aging Care very interesting and helpful.

Beautiful list! I couldn't word it any better.

My list is exact. I recently got the lesson for #11 and everything beyond.

I'm saving your list to refer back to when I need a refresher. Thank you!!

Beautifully written..I feel the same way..Dad passed from Alzheimer’s, February 28, 2018..Mom in Memory care now..Has changed me forever..Caregiving teaches you so much about your loved ones, yourself & your strength

Great list and great responses. I have a couple of my own to add.

1) I've realized how important it is to plan for my own retirement and beyond, both monetarily and beyond. Having the right paperwork...POA, will, trust, etc...has made things so much easier in caring for mom. What was difficult was her not accepting getting older and her limitations and her unwillingness to even consider or try out assisted living when it was clear to everyone that was the best option for her. She refused to visit facilities to learn they are not the nursing homes of 50 years ago anymore. The one I wanted her to go in was an absolute resort! So my mind is open, at least right now, to looking into these when it is my turn, knowing that I don't want to place the kind of burden on anyone that was placed on me and my brother. Don't get me wrong, we both loved my mom very much but let's face it...caregiving IS a burden if it is something you would choose to do. There were better options available for mom that would have made all of our lives better, not just hers. I don't want to be that person.

2). Caregiving has made me older than my years. I've spent way too much time in my late 40's and very early 50's thinking and talking about retirement, assisted living, Medicare, etc. etc. etc. I mean living it all DAILY while caring for mom. It's one thing to put money away for retirement, like thru a company 401k where you think about it once in a while, sign up or change the contribution periodically, and then forget about it until you get closer to drawing on it. Then you spend your time enjoying the NOW. But when you're a caregiver, that ability to just enjoy your life now is stripped away because your time is spent worrying about making someone else happy and comfortable at the end of their life. Their life becomes your life. Even if you take a respite break, your plans still revolve around them. 10 years ago, I never would have bought trip insurance. I'm not worried about not being able to go because of ME...I was worried something would happen to my mom and I would have to cancel or cut my trip short.

My mom passed away last week. The past couple years have been extremely difficult and challenging for me and my brother (I also realize how lucky I am to have a sibling who was willing to step up when I couldn't do things any more!). While I am sad for a lot of reasons and miss mom tremendously already, I have to be honest and say that I feel relief. Even though I've been busy making arrangements, I have been able to go about doing other things, like my job, without thoughts of something with mom creeping into my mind all the time. Even just the guilt about not having talked to her in a while because I was extremely busy is gone. I WAS extremely busy and did want to talk to her, but it just didn't work out all the time. She had a lot going on too, and lived 3000 miles away in another time zone, so it just wasn't realistic to talk as much as I would have liked. But I thought about it and had to live with that daily. So yah, there is definitely relief, which I won't apologize for. It just is.

Thanks for the topic.

I, too, have thought about my own future more while helping to care for my 91-year-old MIL. I keep praying, "Oh Lord, please don't let me be this much trouble!" Haha! But seriously, she displays behaviors that indicate deep anxiety and I truly hope I will have dealt with my anxieties before I reach the point where I need to depend on others to care for me.

On the "no guilt" (relating to #9 and #11), I pray that you never have family members or attorneys trying to lay guilt on you. In our situation, there are people who would pay off the current caregiver to say bad things about us. And we're not entirely sure she wouldn't lie for money. We have to keep overly meticulous records because we have vultures circling...

THANK YOU for #13 & #16! Loads of blessings to you!

I would add #17: If you have people close to you that you are 100% certain you can trust and people who support and listen to you throughout this long journey, treat them like the solid GOLD that they are! Those people are like medicine to your soul.

I learned that is aging and illness is not for the feint of heart and that love transcends all. Also, that every person in a nursing home needs an advocate. I kept wondering, as I worked on behalf of dad and then mom, what happens to someone who doesn't have a champion to work on behalf of them? Our society needs to do a better job of caring for those who can't for themselves.

I learned that my energy wasn't limitless and that anxiety could get the best of me and that sharing my anxiety with a social worker wasn't a sign of weakness but of strength.

I learned that the Medicare and Medicaid programs aren't perfect, neither is hospice. We have a lot further to go.

I worry that if and when I need to caregive again, I may not have the fortitude to do because I now know full well what it entails and I will be older.

Most of all, because I spent the lion's share of 7 years with them, I learned so much more about their life stories and just how much I loved them and they loved me. I wish I could spend another lifetime with them; they were such interesting people. I will treasure that time with them even though it was the hardest thing I've ever done. I miss them so much.

Thank you for sharing. I relate to this a lot. My mother is 83 and in the middle stages of Alzheimer's. She came to live with my wife and I almost 2 years ago because her husband died and she did not want to go into any other home. I quit my job to care for her. She gets a small pension that helps but I still need to file paperwork soon to get paid by the state. My wife works full time to support us and 3 kids (one teen and 2 in college). Yes my wife is a saint. I'm feeling all of those things you shared, daily lately. I know my mom is loved and where she wants to be but sometimes I feel like she might thrive around people like her. I don't know. Right now she loves just holding her dog in her lap and watching tv all day. I get her out for walks and movies. My sister takes her once a month to get her nails and hair done. I take her to watch my daugter's volleyball games. I love my mother and feel I owe her since she raised 4 kids as a single mom, but sometimes I truly feel overwhelmed and stressed about whats to come.

This is a great list. Mine would be a bit different after 7 years of caring for my mom, but much is the same as yours. In the 10 years since her diagnosis she seems to still be in the middle stages of Alzheimer's at almost 90. I find I am a very different person now. I have friends who are interested to hear about my mom's journey and others who think I am just making excuses for not living my own life because of her.

For whoever has posted and might read my post, may I use your words for an art project I am working on, painting portraits of care givers. It has occurred to me that anonymous statements from you as part of the exhibition would be powerful as well and add to understanding of what care giving really is.

In addition to everything that has been said, I have learned to accept help. Financially, emotionally and physically. By accepting help, I have come to understand that as much as it blesses me, it blesses the giver as much if not more. I have also learned who is for me and who is not. Friends and family are not necessarily supportive for many reasons. Sometimes it is selfishness, sometimes it is because they cannot cope with a crisis situation and sometimes it is just because they don't understand and don't even try to understand. Regardless, these people, no matter who they are, no longer occupy a place in my inner circle. I haven't cut them out of my life but I don't have the time or patience to walk a mile for someone who cannot walk a foot for me. What is that saying? If you can't handle me at my worst you don't deserve me at my best.

Four years and eight months of no sleep, unending demands, verbal abuse , throwing stuff and screaming she hates me, and endless tantrums has sucked the life out of me. Cost me the money I had saved for retirement and ruined my health all because I was left stuck with someone who never cared for me at any time in her entire life. Left me at two months old.
I am sending her to the first nursing home I can find. I want to be able to work what little I can. I want my life back. I want to be able to go to the doctor, the dentist, to leave the house and see my kids. I owe her nothing. I treat her well but I absolutely despise her.
I'd never do it again, I should have left her in the mess she made, given it to do over I'd never have taken her in, never.
Thats how it changed me. I have no guilt, I did all I could for a vile person who deserted me. I'm, done.

EssieMarie:

I'm sorry you feel like you've lost your creative spark. You haven't, really. There's a little pilot light inside of you still burning, waiting to ignite when you're ready.

When my train wreck happened (father's death and mother's decline), I was forced to abandon a cherished creative effort. For 2 years it lay neglected. I felt like my creative spark was snuffed out by grief, constant worrying and responsibility. I had a lot to work through. After many months, bit by bit that spark re-ignited on it's own. I didn't tell it I was ready. It told me IT was ready! And along with it came new insights, courtesy of the mind-numbing, heart-crushing ordeal I'd been through. I'm tired. I'm humbled, but richer for it.

Don't despair. It'll happen in its own good time. (((Hugs)))

I would like to see another name adopted for people who although they may take care of financial responsibility and visit their loved ones in homes for the elderly, they are not caregivers. Caregivers are those of us who take care of someone 24/7 with no help from anyone. There is a big difference. I am sorry if this sounds petty but when you have done this job for four years for a grandparent then 14 years for both parents and two years for your brother, you will know there is a difference. These were all done at different times, thank god, or I would not be here to object. I find I can not sympathize with many of you, as you sound so sorry for yourself it bothers me. Why do you even bother, just walk away, let some one else do the job, that is what you want to do any way. Your life is so much more important than theirs. I pray if you ever need help some one will not think so much of themselves that you are put out to pasture before your time. I always thought of it as a privilege to be able to help some one who took care of me when I was too small to do so for myself, but after reading this column I am beginning to think there must be something wrong with me, that I would actually think of some one else before myself I must be crazy.

It appears I posted my little meltdown on the wrong website, as most of you seem to be the HANDS ON VARIETY caregivers. But it changes nothing in how I feel about the ones that pass the buck.

wow... great post...
I'm still learning,,
I learned to have "thick" skin
I learned its ok to cry alone
I know what needs to be done, ahead of time for when I am older
I hope to age gracefully, with positive attitude, and accept support

What I have learned from being on this site is that I am not worthy of the name "care giver!" Several years ago I took a position as a live-in for a woman dx w Alz, but she was nowhere as far along in her journey as some of you are describing as your family members. No, she could not be left alone, yes, she put things away in weird places, yes, she needed help dressing, showering and with personal hygiene; yes, she repeated questions and conversations and drove her daughter to distraction, etc. But she was an absolute dear to be around and none of this bothered me a bit. Eventually her other kids took her to live with them in another state before her dementia became too severe.
I loved her, and caring for her - sorry, looking after her - was a joy and a privilege.
Recently I lost my mother-in-law of about 8 years. She was only recently beginning to show signs of mild cognitive decline. In no sense was I her caregiver, and she would have bristled at the very suggestion. It was probably a good idea for her not to live alone in case of a fall, and at 90 she did tire easily, so I know I was a help to her.
But not like you guys who are really in the trenches. You have my respect and I salute you. I am also learning so much from you. I came here because I thought I was going to need your advice and experience with my MIL. Obviously I'm not, but now that I've met you all I hope you don't mind if I remain part of this community. You'll be a support to me in other ways. Thanks.

My caregiving has ended. So my response is going to be it has made me reflective.