From the start; If you could go back what would you do differently?

I would have been more forceful inspecting Mom's skin. She developed a coccyx bedsore due to immobility from living nearly 24/7 in her recliner although we didn't know it; this was in her own home, where 2 of her children lived, too, but not me. When she asked for something, she got it; when I wanted to stay with her several nights to help her get used to sleeping again horizontally in her own room, she refused.

When at 87 general weakness prompted an ER visit, the techs discovered the bedsore which was about the size of a quarter, contacted APS, who said she couldn't be released to home. Eventually, APS discovered the lay of the land and dropped accusations, but by then the bedsore needed exhaustive treatment and healed completely after about 2 years; Mom never came home again. When she died one year after that, she had no bedsore because the SNF was a good one and attentive to moving and positioning frequently.

My decision was pretty much taken out of my hands. My mom has AD and mobility issues. My house would be horrible for her. I love my mom and she was a wonderful mother. But she’s depressed. Wants to die and can be mean and angry. Mostly just to me. After our visits I’m emotionally drained. Also physically drained because getting her out is very scary. So afraid she will fall. I never thought I WOULD NOT have my mom live with me. But AD definitely changed things.

Welcome to the forum jcubed821!

You can see from the responses how difficult it is to make the decisions that must be made. Every situation is different and solutions are limited by income, ability, availability, etc. Reading the travails of others can give you some inkling of issues you might encounter.

From your profile, it doesn't sound like your mother has dementia, or at least it hasn't been identified yet. It might be wise to at least familiarize yourself with the signs - the early ones are very subtle. If she starts down that path, you will want to know asap and having the knowledge will help!

As cwillie said, "hindsight is 20/20!"

Harpcat said "things I would say is to learn how to use therapeutic fibs, understand as much about dementia and ways to talk to the person. How to handle it if they get abusive ore resistant to your help. When to back off and when to have boundaries. BOUNDARIES are essential!!!" and "Dont let any one try to guilt you about how you are handling the situation."

The first part of Harpcat's comments posted above deals with handling someone with dementia. Keep those in mind if you find your mom starts down that path. As for the guilt laying, that goes double for those who will try that on this forum!!! There are family and friends who might guilt you about not taking on mom's care, but don't let it affect your decisions. If they are so smart, let them do it! There are also a few on this forum who will guilt you, tell you your parents cared for you as a child, etc, but 1) it isn't the same and 2) it should be done if you can and you care, NOT because they raised you (mostly this is choice by parents - we don't always get the choice!)

Your profile says "In a family of four children, there are 3 boys and I am the only girl. 56 years old, and the one stuck with caring for my 81 year old mother."

This is another lesson for anyone new to the care giving decisions - all too often siblings are distant/useless. Even worse are those who are not only useless, but criticize what you do and try to direct you. Ignore them. Don't harbor any ill will towards them in any case - it won't affect them, but it will affect you! Just ignore and pretend they don't exist.

Doing differently? My decision not to take on mom's care was made before it needed to be made. There is no way I could live with her before the dementia, less after. She can be very difficult to work with, critical, stubborn, petulant, accusatory, guilt-tripping, nasty, etc, and also I am older and have several back issues that mean I can't support her weight, my house can't be "handicapped", esp the tiny bathrooms and there's no way she can get in/out of the house with full stair access only. I probably would have taken funding to tackle all the trips I had to make AFTER her move to MC (50 miles/1.5 hr each way, for 1.5 years!) to get her condo clean, clear, repaired for sale. Perhaps some pay for all the work needing to be done to get on as rep payee for SS and federal pension (POAs do not work for these and roadblocks on pension, it took over a year!) I didn't mind taking over the finances, etc when she couldn't do it, or make trips to help out when still living in her place, but since then, eeeeuch.

In the end it is a personal decision. Being informed helps, being aware of her issues is key. Knowing how taking her in, if that's a consideration, could impact your present and future and this should be considered as well. Leaving work before retirement age will impact not only your family's current financial needs, but your SS/retirement and/or your own future health and medical/care needs. Giving up your free time and then some could make for some resentment. If you think you can handle it all, and you have a great or at least very good relationship with mom, it might work. If you don't, I wouldn't consider this an option unless there are no others.

Question - does hr current Independent living mean a home or a facility?

I just finished caring for my 86 year old dad who just passed away and all I can say is I would never ever again be someone's caregiver. It was the most stressful time of my entire life on this earth. I thought I would lose my mind, but at the same time because there was no funds to hire someone and he refused to get medicaid, I could not trust just anyone in the home to care for him. Make sure you mom has medicaid, it is the only thing in place for long term care. Medicare or medicare supplemental will not pay for long term care. The only other plan to pay for long term care is long term care insurance which as an insurance agent I can tell you it is quite expensive and not being offered that much because of the expense not many people are getting this type of insurance. Also make sure you mother has no property in her name for at least five years prior to getting medicaid. Medicaid will do a five year look back if they offer her assistance once she passes.

I've been thinking about the numerous crises that occurred during my parents' old age and want to mention two especially awful ones that could have been avoided: colon cancer and shingles.  My folks saw a geriatric physician regularly, so the thought never even occurred to question whether they had had the preventive screenings and vaccine. 

Of course we older caregivers need them, too!

I would research FOG, fear, obligation and guilt. These are the weapons so many parents wield to make their offspring dance to their unreasonable tunes. It is a way to keep you under control and for them to get their own way, no matter what is costs you. Manipulation at it's finest.

Don't believe the lie that you aren't a good, decent human if you don't feel guilty for having a good balance and firm boundaries. That is just more manipulation, guilt is a lying emotion and should not be a master of our decisions.

My parents like to try and use fear, well I'll be dead one day...yep, we all will be dead one day. What does that have to do with you living in my home, sucking my life away, treating me like I am 5 years old and all while you treat me like a personal slave on my dime?!?

I would have found accommodations for care where my dad lived instead of moving him to my home. It didn't last long because all of the lies unraveled quickly because of his health, but it could have been a long nightmare trying to do the right thing by him. Don't believe what your parents tell you, make them show and prove the facts, because I experienced and have read innumerable stories here how the truth is so subjective to old, ill, demented people. They will do and say anything that gets them what they want and if there is money, the proverbial carrot will be dangled to manipulate.

Know what you are willing and able to do, learn to say no and learn to walk out, hang up and not answer the phone. Set boundaries and enforce them, no matter where they go to trying to get around your boundaries. Remember they have the desires of a child with decades of living to be able to manipulate you. It becomes all about them. Believe what you see, believe when they show you who they are, it will help you keep your boundaries and your own life.

Know before you start what the expectations are with the diagnosis. Dementia is a rollercoaster ride and it only gets worse. Every situation is different, however, there are many similarities that you can have a general idea of what to expect.

I hope that you find a great facility and remain a daughter and advocate. If you take this on, you will be a caregiver, cook, housekeeper, scratching post, errand girl, chauffeur, social director, medical assistant, possible diaper changer and that's all before lunch.

I would not have left my home and business in another state and moved into Mom's house to be her full-time caregiver in order to help out my three sisters.

I got Mom's POA for medical and finances a couple years before moving in with her. After moving, the financial and emotional costs to me were enormous. With my sisters, in the beginning, they appreciated being relieved of their caregiving burden.

Then they became the Twisted Sisters and made my life a nightmare. They criticized everything, from that I washed my hands before making Mom's dinner to the Mom's money I spent putting up a fence to stop trespassers from walking through her yard in her nasty neighborhood. At the one-year point I was so physically, mentally, and emotionally spent I told TS1 that I needed to move back home. TS1 had so many plans to care for Mom in her home or sell Mom's house and move her into TS1's home, but never made a move to do anything. The issue was solved when Mom passed a month later.

I can write all this above, but of course, there are so many things that I could never have seen coming. Before I moved to Mom's house, we sisters worked very well with each other. I took care of all Mom's finances, dealing with insurance companies and the government, and they took care of Mom's person and her home. They were happy and so was I.

In no way, could I foreseen how things played out. Had I waited to come to help with Mom's care a month before she died (and TS1 and TS2 had done all the caregiving) likely we'd all be together to this day. Now (there's ALL LOT they did to me), for the abuse and the theft of my inheritance, I will never speak with them again.

I am 53. I quit my job to be a caregiver for my mom. That was 12 years ago. Like you I was a healthy weight and now 50 pounds heavier. I don't blame the caregiving, I blame myself.

To the original poster, you have to decide what you want for your life and what is most important to you. For me, keeping my mom out of a NH is more important than trips around Europe. My mom is now 92. She has a good life, as good as it gets. We are financially broke but we still have a roof over our heads and food on our plates. We have togetherness as a family. My mom lives with my husband and I. We eat meals together, the three us. The three of us go together everywhere we go: Costco, Commissary, Lowes, everywhere. My mom is now wheelchair bound and has been for the past couple years.

She was a wonderful mom. I tell her that now I am the mom. We do not ask her if she wants to go when we go out. We just take her. We just go. She knows that where we are, she is. She has no fear of abandonment or being left behind. For us, that is meaningful.

The doctors tell us, you guys are doing a great job. Sometimes the doctors will say, "A+ for you guys". The doctors say, "She is very lucky to have you."

What my mom has is love. She doesn't have money, we are covering almost her entire cost of living. She pays her own medical (has two insurances) and she pays for her hair (we take her to the salon). When she has extra money she covers some of her clothes. But, she gets kisses every night and in the morning. When my husband tucks her in (under her Disney princess blanket), he says "Good night princess, have sweet dreams. Hot breakfast in the morning. You are going to have a good day tomorrow." She sits on the sofa between us. Oh, and she has two bed buddies, her two dogs sleep in bed with her. She gets a shower once a day followed with body lotion, and then I style her hair.

We've been at this for 12 years and we've had only one UTI caught immediately and treated right away. I am a strong advocate with her doctors. She does not wait for anything. She gets right in.

My mom has never become angry and selfish. As someone posted about saying ALL aging people become that way - it is not true. Some people do not. Some people actually become sweeter. My mom is about the same as she has always been.

What I would say to you at the beginning of your journey is this. Organize yourself. That is key. Organize your physical space the best that you can. Be a strong advocate. You will find your voice, if you have not already. You will become a stronger and more effective person than you were - even if you were already strong and effective. Know you are going the distance and it's a marathon, not a sprint. So conserve your energy, take it slow. Build relationships with her medical staff - any doctors and dentists. Get her onto an online medical system where you can read her test results and email with her doctors. Be proactive with her dentistry. Dental is a MAJOR expense if there are issues so you want to be a step ahead of the game here, prevention is key. Accept where your mom is on each day. Things will change, she will change, but she is the same person. You need to change also to keep pace with her changes. Enjoy the craziness and frustration she creates. One day she will not be able to do that anymore. Remember that how are you in crisis says a lot about who you truly are. Use this time to become a better person because you will be challenged on so many levels. And remember that you choose your response. Let go, as best as you can learn to live in the moment of each day because for those of us traveling this way, the present moment is all we have. You will find out who your real friends are, you will lose some friends and it will be painful. You will gain new friends who you will treasure forever because caregiving is bonding. Exercise at home. Learn how to do that. Drink lots of water - you and your mom. And love, always love.

If there was a time machine we could get in I’d have you ask this question four years ago so I could’ve read these answers before I started down this caregiving road.
Reflecting though, I think I’d pace myself better so I wouldn’t have reached “burn out” so quickly.
At first everything seems like a crisis. And I was always putting out fires. Thankfully not actual ones!
I also thought the commitment I was making would be short lived so I could pour all this energy into it.
Now getting close to five years (and I know that’s nothing compared to the journeys others are on) I would have let the knowledge that I’d be caring for my mom for a long time guide my decisions.
Some things I would’ve done sooner 1) move her into memory care for her own safety, 2) have her get a neurology assessment ASAP to better understand what we were dealing with, 3) start counseling immediately, and 3) establish a record keeping and filing system.
I feel I was very lucky to find this forum early on and it’s provided excellent guidance on so many topics.

I would advise people to put their folks in a nursing home. Caregiving will eat your life up and you will find yourself nearing retirement age...without a means of retiring. Your folks will die on you leaving you alone in the world to fend for yourself. Good luck doing that because you are out of the job market and old yourself.

I'm lucky I managed to get married to a guy who is retired on social security so at least when he dies I'll have most of his. He's comfortable financially so I married him for his money, he's a free baby sitter, so I can work sometimes. This is the extent of my self sacrifice for my mom.

Warning! Your life will get eaten up.

Mine did.

My advice is that for anyone with some financial buffer, use money to buy help. Try to retain some distance.

In my case, there was only a small amount if money and my mother was vicious to any outside help. So I got caught from both sides. I had to provide care myself, unpaid.

What are you supposed to do when your mother is rushed to a hospital? Say I cant go I am working? You have to be there to protect them.

Great question. If only something could have been done differently. Back when we had some health and energy and were still young. Now I am prematurely aged. I am barely living anymore. I just drag myself through the drudgery every day. It is endless. Fighting to get my mother to go to the toilet, or shower, or brush teeth or clean nails. Being abused for trying to help. Having to deal with mountains of paperwork. Having to deal with dozens of staff in facilities. No continuity, everyone overworked and hopeless.

It is a big lie that your parent will receive the care they need in a facility.

Back in the beginning, I wish I could have set a caregiving agreement in place with a lawyers advice. To protect me. To have in black and white what I would do, what compensation I would receive.

I just let it all unfold and it ate up my life.

I became a slave to my mothers well being. I thought I had enough strength to do it and still survive. But after ten years I am now weak. Broke. Tired. Depressed. Hopeless.

So if I could do it all over again? What choice does someone have when you are scrimping by financially?

You have to take care of your family no matter what.

We give up our lives and health.

A SMART person would figure out how to protect themselves. Retain some money. Retain your income. Retain your free time.

It has been a non-stop nightmare crisis every day. The irrational mental state of my Alzheimers mother set the tone for constant tip-toeing around her, walking on eggshells, having to dance around every issue in order to avoid a hysterical reaction. My mother is feisty and stubborn and it has been exhausting.

My life has been completely caught up in every single issue surrounding this one elderly woman. Its unbelievable how all encompassing it becomes.

It is beyond a hard job. It is slave labor and torture.

I have lost almost everything. My savings, my lost job income, my health, my relationship, my boyfriends life has been sacrificed too. We have had no freedom for the last ten years dealing with my mothers life.

It is very sad. She is a human being and I can not step away and allow her to suffer more neglect than is already happening.

I do the minimum I can but it still wipes me out on a daily basis. I will never recover from this.

It is beyond sad what the the reality of what happens in memory care facilities, hospitals, nursing homes, rehabs is. The level if incompetence for staff and management should be criminal.

I have had to give up a good portion if my life just to PROTECT my mother from the neglect she was subjected to.

Everyone has good intentions. But it sweeps you up and carries you away on a flood tide.

If I could go back I never would have agreed to be POA. It has changed my life in ways I never anticipated. Now as I plan for my own retirement I am worried I’ll never get there because I’ll be responsible for mom’s care as she needs more and more that she can’t afford. I wish someone told me to never sign any papers on her behalf. Now I feel very stuck and vulnerable.

There really isn't much I would do differently. I did a lot of research online and found alternative measures to help my DH.
If I could go back and do it again, I only hope I might have been able to do things better for him. But I did my best, kept him at home and ambulatory until his last 3 days when he did become bedridden. I kept him out of adult briefs even though it meant taking him to the bathroom and cleaning him after; he had a fear of having to wear depends and I never forced him. We managed. Until the last 3 days when he wore them for 2 days and then I had to have him catheterized because he couldn't void. My DH was 96 yrs 8 months when he passed.

My only advice is to pray if you believe in God. I prayed daily for guidance and patience and my prayers were answered. Finding this site proves that my prayers were answered.

Keep coming back - there's a wealth of information available on this site.

Ggood luck to you! I am as lost today as I was at the beginning and it just keeps getting worse and will. I had my mil move in with us and all I wanted to do was the right thing but I guess everything I did was wrong. I wanted my family to be held not responsible for her bills, I have two children, a son and a daughter, and my mil has 3 children, 2 boys and a girl. The daughter and one of her sons were no help. I am attached now to my walker 24 7, at least it feels like that. After my mil had her last fall in my house, she ended up in a very nice Nursing Home, and it is getting worse with her family. We have a guardian in place now, and while that was terrific in the beginning, I think I could have taken care of her finances myself?! Just good luck!

Great question. I wrote a book - Dying well Prepared: Conversations and choices in which I address this quite extensively. There are many pitfalls that are easy to fall into so be careful. There is no simple guide that can do justice to this on a limited forum such as this. Best advice is to think through what you need, write it down, check backgrounds and references and insurance and keep close tabs on everything with checklists and reviews.

My advice is read all comments. Then read again. In 99.9% of dealing with aging parents they do get nasty if they don’t get their way. They want what they had their entire lives. They get childish. They get selfish. They think they deserve it, whatever it might be. It is ALL going to be on YOU! I moved in with my mother after my dad had passed almost 6yrs ago. I am here 24/7/365. Help from siblings maybe 8-10 hours a week, IF they have time. I do it all, care for her, cook, all appointments, Take care of HER home, lawn, etc., etc, etc. you WILL be giving up your life. My mother was the most caring, giving person alive. That person is gone. Who ever thought she would live this long? Certainly not me. She is now almost 94 and wants to live to be 100 😳. At this point she will out live me.
Would I do it again?? Care for her, yes. Move in with her no. My mother also does not have the resources to find another home, nor does she want to. I can not even get her to go to her other daughters house for a night without a major brawl. Tears and threatening to call the police that she is being made to do something against her will. I could go on and on, and I did. Set boundaries and do not give it as it will snowball out of control.
Again, read all comments. This WILL probably be your life.
Good luck!!

I’ve enjoyed reading these posts. What a great question and an eye opener for many. I wish everyone embarking on this journey could read these first.
things I would say is to learn how to use therapeutic fibs, understand as much about dementia and ways to talk to the person. How to handle it if they get abusive ore resistant to your help. When to back off and when to have boundaries. BOUNDARIES are essential!!!
Also from the beginning, do not lose who you are!! Decide up front that you matter too and back off so you can enjoy your life and not give all of yourself. Sit down and figure out how you will do that by enlisting help, or respite care, day care etc. Personally, if the money is there I agree with the two parties living apart. Socialization is important and they can’t get that with just you. When they balk and refuse sitters etc. stand your ground. That is why you are now in charge. If you are getting too many calls a day or at inconvenient times, block the calls or don’t answer. You have to be up front and say I can’t do it all, I’m not a nurse a doctor or awake 24/7. I need to work, look after my health, my kids, my marriage, etc...you get the drift.
Dont let any one try to guilt you about how you are handling the situation. One last thing, people who don’t or have never been a caregiver don’t get it! Find someone who does.
Don't quit your job. And I found counseling was very helpful to get objective opinions. My best to you and stay in this forum.

Don't "should" on yourself.

Don't doubt yourself

If you think you have done something "wrong" forgive yourself.
If you think someone else has done something "wrong" forgive them.
(forgiving someone else is for YOUR benefit not theirs what emotions, feelings you have matters not in their life but it screws up yours.)

Make the best decisions you can at the moment, given the information you have.
When you go to bed if you can honestly say you did the best you could that day you should be able to sleep well. (until you hear him/her call out)

Accept help when you can.
If someone says.."if there is any thing I can do.." give them a task to do.

Contact Hospice a lot earlier than you think you should. They can give you and enormous amount of help and equipment. Once accepted on Hospice as long as there is "documented decline" a person can remain on Hospice. Keep notes for yourself, document daily life and any declines you notice. It might come in handy.

Self care is just as important as caring for someone else. Take time for yourself.

Many times I've wished we would not have supported my mother's wish to remain in her own home after she lost her eyesight and became housebound. Of course hindsight is 20/20 and there were very good reasons for the choices we all made - mom was still relatively young, the senior's apartments that are popping up everywhere now weren't available then, and we were all very busy with our own families and concerns and it was so much easier to just do nothing. When I think about the years that she was so very isolated and how incredibly difficult that must have been breaks my heart.

I'm glad to see someone ask this question. This is my first post. I am a 62-year-old retired widow with no children. My 83-year-old mother, who lives alone, is 1 hour from me. She is fine physically, is still able to drive with no problems, but is beginning to have mild memory issues and a little confusion. At one time I thought of selling my house and moving in with her. Thankfully, I came to my senses before putting my house on the market. She is still fine living alone and I keep an eye on things, visiting a few times each month. I will be her sole caregiver since my only sibling is estranged. We've already done POA and health directive, etc. Mom has a neighbor that cuts her grass and does odd jobs, a group of ladies she plays cards once a week, and other friends she visits that live close to her. She does get moody sometimes and I'm trying to learn how to let the occasional ugly remarks roll off -- it's not easy. When she repeats herself it can be hard not to say, "you've already told me that." There are also times when I just step in and do what needs to be done. If it irritates her, she gets over it. Other times we get silly and laugh until one of us wets our pants. I'm glad this forum is here. I enjoy reading the questions and comments. We can only take it a day at a time ...

What I would do differently is not put my mom in the first two nursing homes for rehab that she went to. There were situations that should have brought a lawsuit on them. The third rehab was good, but I still have major anger issues about the first two. I would also be more aggressive with looking into hospice sooner, as things got easier when they came on board. I would have sent the rehabbers packing sooner as it did no good. My mom was obviously declining at 93 and all they did was lie and say she was going back to her home. I had my mom in my home, she was bedridden for nearly 2 years. When dealing with hundreds of people during this time, I was not prepared for the incompetence from half of them. I am so thankful for the help we had from hospice.

Don't give up your job to be the caregiver. Don't move in together. If she is very low income, use community assets for housing assistance and hopefully caregivers thru medicaid.

I started my caregiver journey 8 years ago when my mother was 80 years old and I was a healthy 55 yrs old. I weighed about 140 lbs. Today I am 63, I weigh 205 lbs, I have had a minor stroke, I can't stand in one place for more than 5 minutes and I never leave the house except to take Mom to doctors appointments. This was NOT the life I envisioned for myself. When my Mom was my age, she and my Dad were jetting around Europe, riding bikes on 60 mile trips - I am missing that part of my life because I gave up the biggest earning years. I took early SS retirement last year so I'd at least get something, and because they look at the last 5 years, I only got $850/month. Don't do that to yourself. You have to look to your own future years, too.

There are already some great answers here. I would only add, realize this could go on for a long time. My mom is 95 and I've been dealing with her mental & physical decline for 14 years.
Take care of yourself. First and foremost.
It's okay to let someone else do the majority of caregiving (assisted living, memory care, etc..)
Learn to smile and nod often.
However nasty and mean the comments, do your best to let it roll.
Use this site as needed. It's such a comfort. You are not alone.

🤞I would worry less: Do your best and pray for the rest
☹️ I would not get upset because of words I heard or behavior I saw I did not like. It IS the disease’s behavior...
😊 I would not feel guilty being good to me, if I want to survive this roller coaster
👍 Thank you to all of you who share your wisdom on this most valuable site!

I just have to thank everyone for being so transparent and honest with your answers. I am so impressed with all of these amazing answers.

jcubed, please take the time to read each one of these postings because there is a lot of wisdom here. Wonderful responses to your question.

As you can see, you asked an important question that touches all of us and many people will benefit from the answers listed here.

I wouldn’t do it all over again. I would have walked away years ago. Instead I wasted so many of my years. Years that I can never get back.

My sister and I took care of both our parents together. If I were doing it again, I would get the overnight caregiver earlier instead of us taking turns staying at night.

I would have remained my mother's daughter and best friend rather than becoming her caregiver and fire putter-outer :)

Would not have tried to handle her vast financial problems.

Would not have moved her into my house.

Instead, would have just helped her enjoy what little life she has left: going on day trips, shopping, trying new things, laughing together.

Because because I decided to take on those other roles, we do very little of the things we could have been doing together, and now stress and resentment are growing from the once beautiful relationship we used to have.

Another thing I'd do differently: not put Mom's excess furniture and possessions into a storage unit when she went into Memory Care. We ended up donating most of it after paying rent on the storage unit for a year and a half. Should have faced the difficult task of disposing of things earlier.

I agree with Kimber -- I would have devoted more of my visits from across country to outings and fun activities with the folks when their health allowed and ignored more of the non-essential tasks. I have happy memories of the trips & outings we did take together, but now wish there had been more.