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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Caregiving changed me from a happy, productive and optimistic woman into a bitter, worn out, pessimistic wretch. I used to live each day fully and eagerly looked forward to the future, but that soon evolved into dreading each day as it dawned.

Sounds pretty drastic, doesn't it? But that's exactly what happened, until my husband sat me down one day and said, "We gotta do something about this. Your mom's turned you into a nervous wreck."

Mom has lived with me for 10 years, the last four of which have required constant caregiving, including medication administration 8 times a day, meals, dressing, bathing, changing Depends and cleaning her after toileting, not to mention laundry, linens and cleaning. She is 86, severely disabled, legally blind, partially deaf, and bladder/bowel incontinent, and her personality dictates that the world revolve around her and her needs.

The worst part of caring for an aged parent is the parent-child relationship. Mom still sees herself as The Mother of the House, and I'm still 14 years old. It's often difficult, if not impossible, for a parent to relinquish authority over the child, even when the child has reached the age of 61. And it's harder still for the child to exert necessary control over the parent.

I felt sorry for Mom. She had been quite active and productive in her younger years, so I tried to put myself in her place and be as compassionate as I could - and that led to giving her free rein over her time (and mine). She got up when she liked, ate her meals when she felt like it, and went to bed at night when it pleased her to do so. As a result, our entire life descended into chaos.

My husband's intervention made me realize that I had to quit being the child and assert myself. My house, my rules. As a retired accounting professional, I know the value of conducting business in an orderly fashion. Running a household, with or without an elderly occupant, is no different, and if you allow things to get sloppy, the whole mess gets out of control in a hurry.

As a first step, I finally devised a strict schedule for Mom to follow. Out of bed by 8, breakfast by 9. Lunch at noon. Nap at 1, up at 3:30. Dinner at 5, bedtime at 9. This not only facilitates proper medication administration, but it also allows me to plan the use of my own time, whether it's for housework, shopping, errands or just pursuing my leisure interests of writing and photography. And I get to go to bed at a decent hour, too.

Mom balked at first, but I didn't back down. It's been about three weeks since I put the plan into place, and it's running smoothly. I no longer feel so burned out, resentful and just plain crabby. I feel as though I have some modicum of control over my life again. Life still isn't perfect, but it's a lot more bearable now, and that will make it easier to surmount the other challenges that still exist.

So the answer is not how I've changed - it's what I've learned from the experience. If you choose to accept the role of full-time caregiver (and sometimes there is really no choice but to do so), it is vital that you fit the patient into your life - not try to fit your life around the patient. It makes all the difference in the world.
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CantDance Feb 2019
The role-reversal thing with caregiving was one of the hardest adjustments I had to make. Great post!
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I speak from many, many years of experience. I was a caretaker four times - for a dear friend for 28 years (while I worked full time); for my father who died when I was l9 years old; for my mother who was ill and who died when I was 33; and finally for my husband when he developed pancreatic cancer. I learned first of all that there are some things that cannot be changed - people get old and they get sick. Some people need help in different ways that family members and friends simply are unable to help for physical, mental, emotional, financial reasons. Other people who are ill and need help change in such a way that they are now abusive, mean spirited and will generally make the life of the caretaker hell on earth. I will tell you this. No caretaker, and I care not the reason or the relationship, is equipped to handle every patient, nor should they. If the patient's actions and behaviors are starting to destroy the caretaker, or the family unit, or otherwise having very negative and difficult consequences, then there simply is NO CHOICE but to PLACE THE PATIENT SOMEWHERE SAFE AND WHERE THEY ARE CARED FOR. I know finances are always a problem but I assure you there are ways to be found that it can be done. YOU, the caretaker, cannot have your life destroyed by another human being. You don't deserve that. They have lived their lives and now it is your turn. I learned that much too late.
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PeeWee57 Feb 2019
Riley, I know very well where you're coming from. I seriously considered placing Mom in a nursing facility, but there are very few such facilities in our rural area. I toured several, and was horrified by most of them. Fortunately, the nursing home that's the closest to us (10 miles) was clean and efficiently run, but there's "no room at the inn" - I put Mom on the waiting list 2 years ago. In those two years, she's moved from #4 on the list to #2. At this point, I have no choice but to take control of the situation (as I wrote in my post just after yours) and deal with it the best I can until an opening occurs. Hopefully that will happen before her condition deteriorates to the point where I am completely incapable of caring for her myself.
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my mother died 20 years ago of Alzheimer’s and my father hid the extent of the illness he didn’t want to be the bad guy by putting her in a Dementia ward. He always presented himself as the most wonderful husband He also wanted to spend her pension So the responsibility was given to me
i did not get along with my mother, she was only 66 when she went into full time care
i learned that is hard to take on the responsibilities for caring for someone you don’t like
resentment was palatable but I carried out my responsibilities as she was my mother. Besides who else was going to do it. My brother ran away to the other side of the world and avoided everything but I don’t blame him.
i learned that after her death my father was a big fat liar who was a compulsive gambler and gambled away everything all my childhood and my mother covered for him
i learned this woman I disliked was not the villain but the victim and my father drove her into the ground and crushed her soul
i saw my mother in a new light
then of course his turn came around and I learned what a selfish self absorbed human being he was. But again I cared for him right up until his passing last November aged 88 and I am not ashamed to say it was a big relief
now my husband has Parkinson’s with Lewy Body Dementia being his first symptom he was only 58 when it first started to show
I have learned that you are on your own and your in-laws turn on you quickly
my care giver journey has made me bitter, resentful and angry and I am tired of it
i have learned that I will not get through it this time without preparation for respite care and eventually full time care
i learned that nobody can understand what being a Carer means until it happens to them
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BlackHole Feb 2019
Raw and honest.

I, too, learned sh*tty secrets about my family after stepdad died. A couple of years later, more dirt came out after my mom passed.

Your in-law debacle is rather common, too. Unfortunately.

Research “complicated grief,” if you haven’t already.

The elder years with parents can be unbelievably bumpy. The despair changes us.

Thank you you for sharing.
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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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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 2019

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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How has caregiving changed me?

I'm married to a Vietnam Veteran.
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 2019
What a wonderful post. Thanks.
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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 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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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 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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After 7 years of taking care of my Mom, I learned compassion, unconditional love and patience.
I learned worry, changes nothing and makes you old before your time.
I learned getting old is extremely expensive.
I learned to take great care of myself and avoid doctors, hospitals and pharmaceuticals at all costs.
I learned attitude makes all the difference in the world.
I learned the key to good health is thru nutrition not drugs.
I learned to say no.
I learned my siblings suck.
I learned getting older is not for the feint of heart.
I learned God has a plan for all of us, and regardless of what we think or do He is in control and has our back.
I learned each day is a gift and to live it with joy, because tomorrow is not guaranteed.
I learned laughter truly is good medicine and enjoyed it often. Especially in the mist of a crisis.
I was lucky, my Mom planned for her old age and made sure she had everything in place and all the legal stuff done way before it was needed, which I have recently done so my daughter does not have to worry about it.
Now when I do things I think of how will this effect me when I’m older, will it help or be a hindrance?
Unfortunately, I’m gearing up for round two as my husbands health is deteriorating by the day and refuses to take better care of himself.
But, I thank my Mom who gave me a preview of things to come so I can be better prepared. And yes, there will be many things I’ll do differently.
But the most important thing I have learned is that I’m not alone and to fully rely on God and give my burdens over to Him.
As hard as those 7 years were, I believe they made me a kinder, gentler more understanding human being and for that I am extremely grateful.
I love my Mom and miss her so much, I’m just glad I was able to be there for her when she needed me the most.
Caregiving made me a better person!
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PandabearAUS Feb 2019
I loved your point “I learned my siblings suck”. So true
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I cared for my Mom 17 years, and the last 2 years left me with no faith in other people. Very few people in hospitals or nursing homes were of help to us. I did have some wonderful people from hospice, but I feel caring people are the exception and not the norm. I am an only child, and all relatives on both my parent's sides are in Europe. My husband did help when he could, but his family was indifferent to our situation. After a fall, mom went to the hospital and then a NH for rehab. There she developed a serious UTI, delirium from it, and a stage 4 tailbone wound that I only learned about from the intake nurse when she was rushed from NH 1 to the hospital. From there she went to NH 2 where the staff was largely lazy when the director was not around. One stupid woman dropped my mom trying to get her into the wheelchair and broke mom's ankle. They sent her home with another UTI and delirium and back to 2 hospitals. After this a rehab in NH 3. That 3rd nursing home at least was good and they put my in touch with a wonderful hospice. I took mom home anyhow on hospice where she died a half year later. I learned how to give insulin shots, deal with urinary catheter bags, treat a deep stage 4 wound, and manage all medications. During this time all "friends" disappeared. After my mom died and they came out of the woodwork again, one friend proceeded to hammer with me bragging about her perfect life, etc. and still does to this day. I feel like I went through a war with my mom's decline, and have anger issues at those who failed me, be it NH or hospital personnel, friends, etc. It is scary how much incompetence is out there in dealing with old and sick people. I fear my own ageing now that I see the incompetence. I am trying to get on with life, but after witnessing this it isn't easy. It has been 3 years. This is how caregiving changed me, though I am glad I was there for my mom and tried to make up for the incompetent jerks out there.
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mally1 Feb 2019
Sounds as you need some new friends, Katie....
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