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?
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.
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.
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.
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.
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].
Find caregiver support groups.
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.
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).
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.
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.
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.
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.
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.
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 !!