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

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

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I am so relieved to have found this site! I am at the *start* of this caregiving situation with my mom. Mom has a very low social security income and is 81 and on Medicare. I would like your advice! If you could go back to the beginning of what *you* have been through, what would you do differently?

Care Decisions Mom New to Caregiving

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jcubed, I know for myself I would have "set boundaries". I didn't know I could do that until I found this AgingCare forum, but by then it would have been difficult to do as my parents [90+] were too use to calling me for this or that.

And I needed to have done a better job to convince my parents that I was a senior myself, with my own age decline. They were still viewing me as 20 or 30 something.... [sigh]. Plus trying to get off work wasn't easy as my manager was like the lead character in the movie "The Devil Wears Prada". Hey, lets throw more stress on the fire.

And, I should have taken the advice of my primary doctor and started taking Xanax on day one, instead of seven years later !!

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I would have put on my Xena Warrior Princess persona a lot earlier in the game. I trusted the health care system to be on top of things and they weren't, or if they were they certainly never shared their thoughts or concerns with my mother or me. Nobody explained what it meant that my mother's MRI "lit up like a Christmas tree". No one in health care EVER used the words vascular dementia, either before or after my mom's sudden decline. So when a doctor tells you X, Y and Z ask them what that means: what the prognosis is, what possible complications there may be, what other effects this might have over the long term and what can be done about it.

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I've had a few friends that moved their moms in - in each case, it was a disaster and they have all told me "DON'T DO IT!!". I did the next best thing, I ending up living three houses away from my parents. At first it seemed like a good idea but over the years (15 of them) it has been a disaster, from health issues to marital spats to them not being able to care for the home, you name it. I would have kept more distance from them, and I also would not have trusted them to make sound decisions. They've stuck me with a mess. I didn't expect my parents to end up not being able to take care of themselves by age 75 or so, I've been blindsided by the long and ugly future they've got and have saddled me with as well.

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My husband and I cared for his parents for 15 years. Their needs increased with the years - home and car maintenance, doctor's appts, errands, grocery shopping, ER visits, moves, etc. It creeps up on you until it can be unmanageable by family alone.

If I could have had a crystal ball, I would have stepped back more...expected my in-laws to find other ways to deal with their needs than taking the easiest route which was asking DH or me. That being said, the word "no" didn't come naturally to me although it's much easier now!!

Also, I would have expected them to pay for more of their care. I put thousands of miles on my car to take care of them with only one tank of gas paid for by them. I picked up groceries and didn't get reimbursed. I missed work which meant not getting paid. I don't want to make this all about money but it is an important piece in the puzzle. You have to keep an eye on your present and future financial needs.

If you can, do research now on what services are available to help you. Waiting until it's an emergency need will add to the stress. Make sure that POA, wills, DNR, etc are in order.

On the positive side, my family and I got to spend so much time with my in-laws. We shared good books, good food, memories and inside jokes. My children know that they were loved by them unconditionally. My husband and I have the peace of mind now of knowing that we did right by them. That is priceless to us.

You have already made a great first step in finding this site. The people hear are spot-on with their advice and care deeply.

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Don't try to do it all yourself. Grab all available resources now - start with Area Agency on Aging - what can be used to help? What services are free? What are available for pay? Have your parent consider sooner, rather than later, assisted living. Get living wills, POA in place. Start gathering now what you will need for Medicaid application. Decide how much of your life you are willing to give up and read the stories here so you do not get sucked in to an overwhelming situation where you are it.

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Hi jcubed, I didn't mind the work of caring for mom, just her attitude.
Do it differently than I did, know that: it's never going to be perfect, elderly make a big deal out of nothing most times, it's not ur fault if they're unhappy, (ect, ect).
Hope it goes better 4u.

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Tiger55, Yes! My experience has been that anything that was supposed to make things better....doesn't. I saw a movie about 15 years ago about a young woman who lived with her elderly grandmother. The memorable line from the movie was "Things don't get better, grandma, they only get worse!" Haha, now it really hits home.

(8)

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There will be others who will address the caregiving aspect, so I'll skip ahead and address other issues, specifically, asset inventories and management.   I wish I had had the common sense to inventory nonfinancial assets, as I'm now trying to marshal and sell them.

I would have done basic things like make duplicate keys of everything.   As it is, I can't find the key to a battery operated scooter.    Titles to some recreational assets are hiding as well.

Donation and/or disposition of all the mobility related assets would be easy, but one missing key is holding up the process.   And replacing titles to recreational vehicles isn't costly, but it's money I'd rather spend on other asset disposition.

I focused more on the financial assets, not even thinking of other assets.   It may be that I'll stumble upon some discoveries as I clean out the house, but it would have been a lot easier if I had all the keys and details right now.

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Oh, I can feel your angst! Get the make and model of the scooter and try contacting the company. Maybe they can send you a duplicate key even if there is a charge...I bet you are not the first person to have a missing key!

(3)

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I would make sure that I was the one who had POA & not sibling who did nothing to help until it came to handling the finances which is when he stepped in to demand how things would be done. POA goes to some people’s heads & becomes a control power for them.

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Power is dangerous in small minded people! --T.D Jakes

(8)

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I would have moved her into Memory Care a year earlier.

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Agree wholeheartedly GrannieAnnie:)

(7)

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I wouldn't have been nearly as helpful as I tried to be. Know that whatever is happening right now is as good as it will ever be. It started innocently enough but snowballed into a full-time job. I lived just blocks from my father so he felt comfortable calling constantly, and he felt like since I was retired my job was now to see to his every whim. It wasn't until I finally pulled way way back on my constant help that he begrudgingly agreed to assisted living. Both our lives are so much better now.

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So damn true. jkm.

(5)

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Great question! I went into caregiving totally blind. I did not have your insight to reach out or inquire about other’s experiences or advice.

I viewed caregiving as a responsibility and a required sacrifice. I am the only daughter in my family and I was expected to be the caregiver. Most of all I equated it with love. I never gave it a second thought as to how it would effect myself, husband or children.

I felt awful that mom lost her home in Hurricane Katrina. So all I could think about doing was offering her compassion and the support that she needed. I wasn’t able to think clearly due to the highly emotional circumstances. Mom moved in.

In the beginning she wasn’t as dependent on me as in later years. If I had to do it again knowing what I know now I would have either put a limit on how long she would remain in my home and insisted on additional help that she paid for or I would have looked into other living arrangements and continue to care for her without her being in my home.

All situations are challenging in caregiving, if a parent is living in your home, you moved into their home or if they are in a facility.

Constantly being with mom created problems. Too much togetherness is never good.

There were issues with mom and my siblings that became unbearable, resulting in mom no longer living in my home.

She now lives with my brother and his wife and they are planning to place her in a facility. She is almost 94 years old. She lived in my home for nearly 15 years.

In any relationship, each party must be satisfied. Only then is it a good partnership.

Otherwise frustration and resentment occurs. It is a disaster waiting to happen, which is what happened in my case.

It is becoming clear to me now the areas where I made poor choices. I simply couldn’t see it when I was in the middle of it.

It will serve you well to think about your future and your mom’s future. Please don’t burn out like I did. Please don’t discount yourself or what is important to you like I did. I thought that I didn’t have any other choice but I did. I felt trapped.

Others tried to tell me that I was burning out. Either I couldn’t see it or wasn’t ready to see it. Listen to what others observe. I wish I had. Other people will see things that sometimes we completely miss. Let others help. Final decisions are yours but we can learn a lot from others.

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NHWM: "She now lives with my brother and his wife and they are planning to place her in a facility."

WOW!!! I can't believe it!!!

You should announce this BIG news in a separate thread so everyone who knows you here knows about this change.

So glad you have your life back.

(11)

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Don't expect or even assume that siblings and other family will help you! More often than not, you will be left completely to your own devices. Remember that this was your decision.

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Good luck Jcubed!!! That’s all I can say!!

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I would have not taken the negativity personally.

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I would have moved to Tasmania like I wanted to, sigh.

Clear honest communication with other key players. Don't ever assume! Especially never assume other siblings will help you. Some are very happy that *you want to help* as they continue their merry life without a backwards glance (let alone visit to help).

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Tasmania! Luv luv luv it, lol. Beatty 🎸 rocks.

(4)

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I would have never assumed that doctors, home health care workers, nursing home staff must love people, especially seniors. I'm sure some of them do. Maybe they all did when they started out but then grew jaded? I don't know.

What I do know now after the fact is I would never just blindly believe what a doctor, nurse, you name it, says to me just cause they are in that field.

I'd do more research, investigate my options more, do more follow up and this is coming from someone who did a lot of research, investigating and follow up.

I would have spent less time trying to get my mom to do things that she obviously didn't want to do and more time just listening to her and being in the moment with her. You can never get those last days with your loved ones back. Make the most of those moments.

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We gotchu Gershun. U deserve a whole thread on that though! Sending💟

(4)

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If mom has assets get an attorney to help her draft a care agreement. This will have immeasurable effect on your preparation for your retirement.

Find caregiver support groups.

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I would tell myself not to worry and feel responsible for so much; dust will wait and the house won't fall down. If I opted to use an agency to help however rarely, I would not succumb to accommodating THEIR schedules. I would get the plan in writing and post HUGE notes in every room of where something was to be done, or NOT. And I would dismiss them after one shift if they did an inadequate job. I would try harder to remember that nobody else, especially a sibling out of state, isn't going to care, that isn't going to change and to accept it. I would tend to the legal stuff sooner and hunt down/research the best one in my town and find one who is not only certified, but has the compassion and works on a flat fee basis for tasks: consultation, POA, HC POA, wills...not someone who charges by quarter hour increments dare you send an email or ask a question.

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Polar Tiger, I just sent you a link.

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I would not enable my inlaws to continue living alone. When my MIL was still alive I enabled my inlaws to continue living alone by doing their grocery shopping, cooking their meals, running their errands, taking them to appointments, etc. I thought that was the right and good thing to do. Years later, I learned that enabling is disabling. I would not do it again. I would let them falter in place.

As for you and your mom, you already know that she has no money to pay for services that she will need. Start lining up services and support systems for her now. If she refuses outside help, do not try to be a hero.

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Excellent point, NYDaughter, same here with my parents. My parents could have hired people to help them, but they refused to blow the dust off their wallet.

My parents were telling me that money was for my inheritance. Oh joy. Then they looked at me like my hair was on fire when I said "that's nice, but chances are you would outlive me at this pace". They still didn't understand, and that was mainly my fault being I was the enabler... [sigh].

(11)

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Excellent question. In hindsight, dealing with two failing parents......

I realized pretty quickly that you can only do as much as stubborn elders will allow. That changes as they become more incompetent but meanwhile you have to pick your battles. They don’t want to replace the 40 year old nasty sofa? Fine. Why should I give a s$$@* if they don’t.

I wish I had realized sooner that with elders you just can’t fix everything. Old age, immobility, dementia and illness can be dealt with to a point but not fixed. I realize now that much of my “fixing” accomplished nothing.

For a while I made the mistake of letting dads dementia rule the day. Didn’t want to have that fight, hurt his feelings, or piss him off. I had to get over that to get basic stuff done for them. And the only good thing about his short term memory loss was he forget whatever it was that pissed him off five minutes later. So I got the carpet cleaned, threw his rotted shirts in the trash, started getting his power tools out of the garage...Usually he hardly noticed and I’d think CRAP, why didn’t I do this sooner.

And tell fibs, lies, whatever it takes to keep folks safe. I could write a book on this one. I hate reading posts here about folks who feel guilty about fibbing to old demented parents. Get over it!

And I agree with the comments by FF and NYDIL about enabling. Buts it’s hard to stand back and watch the ship sink. I finally stepped back, said fine, y’all won’t agree to any paid help, come what may.

They stayed in their home about 2 years longer than they should have. Well really, 5 years if I’m honest. My mom could have had some nice years in assited living but was so bad off and beat up from falls when she finally got there she died in 5 months.

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Windyridge, I would be interested to hear what happened to your mom, if you would be willing to share. My mom lives alone but shouldn't. Stubborn and says she will "die" in her house. No dementia, just a depressed alcoholic. She's fallen and broken bones three separate times in the past year, plus additional falls where she's hit her head, cut herself up, etc. I am her only outlet to the world and I can only do so much. We just float from one day to the next waiting for the next crisis. I am concerned for the future - selfishly more for myself these days because I feel she has chosen her path, but I am stuck with the fallout. I don't know what the consequences will be from these falls but I know it can't be good. She's only 77.

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Windy, you are so right about the fibs. Yes, tell them what they need or want to here. I was brought up to believe that lying is a sin but I think lying to spare a person heartache is a different matter entirely.

For instance, one year we knew it just would not have worked getting mom over to my sister's for Christmas so we made a story up that year that we had all decided to have separate celebrations so she would not feel left out.

You do what you have to sometimes.

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A 2ND ANSWER FOR ME - I think I would have spent less time trying to persuade or negotiate things that were critical - shower, doctor appointment. "We're going, now!" You can't reason with a diseased brain.

At the same time - I would have tried to DO less and BE IN THE MOMENT more. My dad might not have remembered NOW, but had kept much of his long term memory from the past - 30 years ago. I would have spent more time encouraging him to talk about the past, his childhood, shown him pictures from the past, VS trying to get the meals done, the laundry done, the scheduling and follow ups all done. Even though his brain was broken - it was not totally destroyed - I should have spent more time being where he was, mentally.

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I know I can kick myself for not going through family photo albums with my parents. Now I have a ton of photos of people I have no clue who they are.... [sigh].

(7)

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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.

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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.

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Same here. We put things in storage for a year and $1000 later, I said enough! And called Salvation Army

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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.

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This are things that come in hindsight and we never believe our relationship with our mothers might change. But that role reversal is like a monster with multiple heads!

I was never one to talk to my mother everyday after I moved out so many years ago...what made me think that having her in my house 24/7 was going to be a good idea! I was ok with visiting for a few hours every year (I live out of state)...calling every other week...texting from time to time...

Now we changed to being the adult...managing finances that have going "what were they thinking!!" and "fixing" finances...in addition to our own lives.

Resentment is bad, but is hard to let go...no matter how much we tell ourselves to "let go!". So to you, @OurOldHouse, you are not alone, and it is hard!

Big hugs!

(1)

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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.

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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.

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Thank you for your honesty. I cared for my mom for 17 years, years I cannot get back. I believe I did a great job balancing her care with my job and personal life, but her needs were always top of mind. She's gone now for a few months and looking back I can't say I enjoyed those years. It was duty and I am glad it's over.

(10)

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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.

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There *is* a lot of wisdom here!
I am very grateful to everyone who has shared their experiences with me!

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🤞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!

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

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