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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?

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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.
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freqflyer Sep 21, 2019
eguillot, welcome back to the forum, we've missed your postings.

You are so right, do not give up your job. It's the one sane place to go every day.

I remember when my own parents, such as your folks, had a wonderful retirement, traveling, dining out, movies, resorts, etc. I wanted the same bucket list they had, but after caring for them, my bucket is now a thimble due to my health issues brought on by non-stop stress. Sadly I have a lot of resentment over that.

This is just not fair.
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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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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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Harpcat Sep 22, 2019
Same here. We put things in storage for a year and $1000 later, I said enough! And called Salvation Army
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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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Upstream Sep 20, 2019
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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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 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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anonymous828521 Sep 19, 2019
So damn true. jkm.
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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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anonymous828521 Sep 20, 2019
Tasmania! Luv luv luv it, lol. Beatty 🎸 rocks.
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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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freqflyer Sep 20, 2019
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].
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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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GeminiUnicorn Sep 23, 2019
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!
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Good morning jcubed,

Great question and great posts. I think AgingCare should make this a suggested reading for all new members. I just finished reading through all the answers. The people on this forum are so amazing.

Someone brought it up, but I have seen it on other posts also, the fact that everyone’s situation is different. There are so many things we have in common, and that’s why the advice and suggestions that we get on this forum are so useful, but there are so many variables within the caregiving situation: dementia, mobility, length of caregiving, personality of person cared for, prior relationship with caregiver, caregiver’s own physical and mental health, finances. The list could go on, but differences in any of these could make your caregiving situation work differently than someone else’s. So we take what we like and leave the rest.

Another poster said that none of your family and friends can understand your situation unless they have been in your shoes. You will find more understanding here, but even then we may have some dissension. Take what you like......
I know of no one of my friends or acquaintances who have had the long slow decline that my siblings and I experienced with my parents. No one.

Things we did right:

1) Used my parents’ funds to hire caregivers and lawn care when they needed them in early 70’s.
2) Periodically assessed their needs to increase caregivers
3) Had family meetings of all children to discuss caregiving needs. (we started this about 16 years ago, and had our most recent last month)
4) Took complete control over parents’ finances which saved their home
5) Researched and received some free caregiving assistance through local Agency on Aging
6) All siblings participated in caregiving (some more than others due to work and family obligations). Prior to my parents going in to the nursing home, we had been on rotating shifts for about two years.

And......we prayed

Things we should have done:

1) We should have taken control of their money earlier. My sister, a CPA tried to handle their finances to no avail because my parents were still able to access their money and squander it.
2) we should have questioned more, and limited the revolving door of doctors appointments due to the fact that my parents had such excellent insurance
3) we should have pursued more and earlier the veterans’ benefits that my father and mother were eligible for
4) we should have researched earlier local hospice companies (don’t wait until you need them)
5) we should have set aside money for their burial so we wouldn’t have to wait for life insurance payout which takes some time
6) we should have educated ourselves earlier that dementia and decline ebbs and flows. Just because they can do something one day, doesn’t mean they can do it the next

......and the list could go on
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disgustedtoo Oct 1, 2019
Your second paragraph - BINGO! Those who try to guilt us or make ridiculous suggestions/comments (thankfully there are not too many, but just one can make your day miserable!) don't take much of this into account. Just because one person can care for an elderly person who is declining normally and needs some help or a safe place to live (my grandmother was cared for this way by mom and her sisters taking turns), it doesn't equate to the rest of us - personality, dementia, finances. our own physical inability to provide hands on care, the list goes on. There are commonalities, but also many differences. Even one person with dementia is different from another. I have watched many in mom's MC decline quickly and pass on or become unable to do much. Mom has regressed in time and is currently refusing to walk after a few minor falls, but otherwise, still ticking along there after almost 3 years in MC (she was the first to move in!)

It is also great to hear from those of you who CAN and DO work together for everyone's best interest! So many siblings don't help or make things worse, so it is nice to hear from the other side! Personally we're in the middle somewhere. Brothers went along with the plan (some balking) to move mom when in-home wasn't going to work, but have mostly stayed out of doing much of anything since. I did have to ask the local one to take over med/dental visits because I can't support mom's weight. I don't even seek advice on care/finances anymore - takes more effort, so it's just easier to do it without asking.
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