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This topic has been addressed in other threads, but I wanted to start a new one. I started to think about my caregiving journey (2+ years) and how it's changed me, for good and for bad.


My mom (93) with mixed dementia lives in a memory care unit. I thank God for guiding me early on to this solution for Mom's care. I can see now that had I brought Mom home with me (against her objections) my marriage and sanity (by now) would have been in tatters.


As Mom progresses further into her dementia journey, I am changing, too.


1. I've come to terms with my mortality. I will die someday. Dementia might happen to me, too. I will care for Mom as I would wish to be cared for.


2. An enhanced appreciation for caregivers, especially those who manage or have managed in-home care. This must be the hardest job on the planet. Not just in practical but emotional terms. It's gut-wrenching. Caregiving for an elder in some sort of assisted living arrangement is challenging too, to say the least. Before I walked in your moccasins, I never fully appreciated all of you who give 200% 24 hours a day, 7 days a week. You. Are. Amazing.


3. An enhanced appreciation for the Higher Power guiding me.


4. An enhanced appreciation for this forum. You've been my go-to people when I needed someone who understood. You still are. Thank you, thank you, thank you!


5. An understanding that I lack courage, self-control, patience and fortitude. I'm working on these.


6. A better understanding of my own strength. I'm stronger than I thought. But still.....


7. I'm old. I'm tired. I have my own issues. These last 2 years beat the stuffing out of me. At my weakest moments I'm afraid of not being able to see Mom through to the end.


8. There are worse things than death. Now that I've witnessed up close what dementia does to people, I pray God takes me before too many brain cells die and I no longer find joy in life.


9. I care less and less about what other people think.


10. Every hour with my loved ones is gold.


11. No guilt.


12. The understanding that ultimately, I'm responsible for Mom's needs. I will meet them to the very best of my ability.


13. Making Mom happy is futile. She chose unhappiness and there's nothing I can do about that.


14. Loved ones die. Loved ones hurt and disappoint, no matter what I do. It's out of my hands. Life goes on.


15. I've made many mistakes in my life. There are no do-overs. Every day is a new beginning and another chance to get it right.


16. Happiness is a choice. I choose happy!


How has caregiving changed you?

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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.
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NeedHelpWithMom Feb 13, 2019
Sunny,

Wow! We could all take a cue from you. I think a lot of us when hurt either retreat or lash out. To turn it into reaching out to others is truly admirable.

It’s because you know first hand how it feels to hurt. All of us have been there. I get it! Many times I have said that I have learned what NOT to do from others instead of WHAT to do and so I did the opposite of what they did so I wouldn’t be just like them. Thanks for sharing what you have experienced that as well. You’ll be blessed.

I realize that you are not giving something to receive, then it isn’t a gift but I firmly believe what goes around comes around.
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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.
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CantDance Feb 13, 2019
Love your post.

Mom is a bundle of contradictions. She'll say something like "I wish I could just go to sleep and never wake up," and in the same breath remark perkily "Isn't it time for my check-up?"

I've come to realize the morbid remarks are largely manipulative. She grooves on people feeling sorry for her. But at 93 with dementia, her sense of self-preservation is strong. Will I hold out over the long haul? I hope so.
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An act of kindness benefits both giver and receiver. It's a win-win, Sunnygirl! Thanks for that reminder!
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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.
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CantDance Feb 13, 2019
My mom was a great seamstress. She made beautiful clothes for me. I told her how much I appreciated those dresses, described them to her in detail, but she didn't remember any of them.

I told her this many times before the memory loss, so I suppose somewhere in the furthest reaches of her mind, my appreciation is there, even though she can't find the right file now.
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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.
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CantDance Feb 13, 2019
Sometimes Mom thinks we haven't taken her anywhere for years because she can't remember. I made her a memory album with photos of all the places we've taken her to, visits, etc with dates, also identifying who and where. I just take a memory card from my camera down to the drugstore kiosk that prints them out for me immediately and keep adding to her album with each visit. It helps remind her how her family includes her in our lives, how she is loved. She can be negative to the point of downright toxic, accuses us of neglect because she just doesn't remember when we do things together. I don't know for sure if she "gets it" but it makes me feel better to know our times together are documented.
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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.
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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.
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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!
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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.
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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.
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NeedHelpWithMom Feb 14, 2019
Wow! Your mom could have been in an action/adventure film! Shows a beautiful example of how selfless a mother can be. She was brave!
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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
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CantDance Feb 15, 2019
How lucky your parents are to have a daughter who "thought ahead!"

My preplanning was limited. Such as it was, it was thoroughly rejected by my parents. They "could take care of themselves, thank you very much!"

Thanks for you tube video. I'll watch it in the wee hours when I have unlimited bandwidth!
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Can'tdance...wow, you are an inspiration for all of us struggling with our parents. Mindset has so much power.
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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!
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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.
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NeedHelpWithMom Feb 15, 2019
What a wonderful post. Thanks.
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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.
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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!!
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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
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CantDance Feb 15, 2019
Ditto to you, cinzim, concerning your loss.

When Dad died, I felt relief for him because his quality of life was near zero. I could tell he wanted it all to be over and join his Maker. My grief was for myself. I didn't want him back, because of his suffering. I just wanted him for myself.

I don't know how I'll be when my mom passes. I expect to feel relief. What else, I don't know.

You're right. Caregiving changes us forever.
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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.
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CantDance Feb 15, 2019
Regarding the loss of your mother, sometimes it's hard to know the most comforting thing to say. After years of caring for someone, we have mixed feelings when they are gone: Relief that their suffering is over, relief from the ever-present responsibility. It's okay to feel relief. Sometimes we have sorrow for unresolved issues between ourselves and the deceased.

It will be an adjustment to step out of the caregiving role after many years of putting your life second. Take comfort in knowing you did your best for your mom. Remember there are no rules or timetable for grief. Allow the feelings to flow when they happen and don't feel guilty if they don't. Like you said: It just is.
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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.
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EssieMarie Feb 15, 2019
Hi AuntyAunt, I just wanted to thank you for your honest remarks and I wholeheartedly agree that caregiving is an act of love and like you wonder what happens to those elderly folks who are left alone in nursing homes to fend only for themselves. Yes, every senior who is incapable of taking care of his or her self does need a campion or advocate to fight for them especially if they are living in nursing facilities. I take care of my mother at home and have been doing this for many years now with only the help of my son. It's a very thankless job when the roles are reversed and the daughter you once were is now the mother. I feel very alone in my role and rarely am able to visit with old friends any more. And yes the caregivers health becomes an issue as we age. I am 68 but fell not long a go leaving me with a painful back injury. I often wonder how I will work again once my mother passes. I am one of the unfortunate ones who only has social security to live on so I will be forced to return to workforce. Well God Bless you for all you do for your loved one.
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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.
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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.
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EssieMarie Feb 15, 2019
Hi thanks so much for your caregiving thoughts. It sounds like you have a very supportive and caring family. Truly your mum is blessed. I do have a question for you as the primary caregiver__ when you take your mother on outings, how challenging is that for you? Is your mother able to dress herself and if so, is it a long process? Is she able to walk or do you have to put her in a wheel chair? And lastly, how healthy are you and how often do you take your mum out? I feel so guilty after reading your post because for me to take my mum out it becomes a major event. First I have to help her dress and she can not stand for long periods of time so I am forced to use her wheel chair. I recently broke a bone in my back from a nasty fall and have not been able to take her anywhere. I did however, take her for a ride to the ocean front which is close by. She refused to get dressed, so she went out wearing her night gown and winter jacket. We drove around for about an hour and I drove through Starbucks to buy us a coffee. She hates to wear street clothes so if we do go out, it's a fairly short drive around town. I have a son who lives close by and thankfully he loves his grandmother and visits us briefly everyday. My older brother and his 3 children have abandoned her leaving everything to me. They visit for 3 hours every other year during the Summer and call her only on holidays. As a result, I have denounced him as my brother. To me, he is just another self centered uncaring wealthy retiree. Well, I wish there were more loving families out there like yours who are doing this job out of pure love. God Bless you and yours.
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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.
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CantDance Feb 15, 2019
ArtistDaughter

"... and others who think I am just making excuses for not living my own life because of her."

Don't you just "love" having your motives explained to you by casual observers? (sarc) Years ago someone in my family told me I got migraines just to avoid social situations. Grrrr! That someone in my family has since grown up with chronic issues of his own. At least he had the decency to admit wrong and retract what he said.

Reminds me of the Joe South song: "Walk a mile in my shoes, walk a mile in my shoes. Yeah, before you abuse, criticize and accuse, walk a a mile in my shoes."

Wishing you a successful exhibition! May it bring recognition, help, and understanding to caregivers everywhere!
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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.
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slp1684 Feb 15, 2019
MAFlatt "Ditto..." I am taking baby steps for accepting help, since I am soooo independent.
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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.
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CantDance Feb 15, 2019
Your anger is justified. It's okay to feel it. No one should be expected to sacrifice their life, health and finances to appease an abuser.

Wishing you a speedy resolution in finding appropriate care for the person I assume is your mom. Now it's time for self-care: getting back to work, taking care of your own health, and reconnecting with your kids. In a word, taking back your life! In the meantime, this is a place where you can talk about your hurt, frustration, and anger; all the emotions you're feeling right now. There are plenty here who know what you're talking about.
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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)))
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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.
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PandabearAUS Feb 16, 2019
Harsh. We are not all the same but we do the best we can. Believe me taking care of finances and care decisions
is time consuming and hard. Combine this with the running around and quite often thankless care recipients and it sucks all the while trying to raise your own family and work and life
it also helps if the ones you care for were good to you. A lot were not.
and many would love to just walk away and give the job to someone else but there is no one else and yes are own lives are important to us and so is our sanity
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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.
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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
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Pstracy Feb 16, 2019
Thick skin, yes. Cry alone, yes. An so true about knowing now how to plan for our own future. My parents didn't plan for long term care and they have has to go into a NH, on Medicaid, which limited choices greatly. What I want for them in a care facility is just not financially possible and it breaks my heart. They thought they would just age gracefully in their home that is not conducive to their physical needs.
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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.
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CantDance Feb 15, 2019
Desertgrl,

You're a caregiver. I'm a caregiver. We're all caregivers, or we wouldn't be here.

We all share the same trench, whether we're hanging on the edge, straddling it, or buried at the bottom! Each one has something to offer the other, and you are no exception!

Our experience differs, but what unites us is the same purpose: caring for a loved one, and sharing our triumphs and struggles.

I'm so sorry for the loss of your mother-in-law. Your experience with caregiving exceeds mine by far. I hope you'll continue to seek advice here and allow us to tap on your own!
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My caregiving has ended. So my response is going to be it has made me reflective.
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