The unknown is scary, @compmom, and also scary is that you are so alone in managing this entire situation. I have often felt exceptionally alone on a given day or night when things were not going well and it was 100% (maybe 99.9%) on me to decide what to do and when to do it and how to do it. It is so rough to be 100% responsible for all the decisions for another’s life, it’s one thing for your little kids, but your parent thinks they have autonomy (can’t remember they cannot handle stuff) and they are no better a reporter than your dog, when it comes to you gaining clarity on how they are doing physically.
Nearly every time I felt that way, I ended up doing fine, doing well even, but it is a huge emotional burden.
@compmom , It is a HUGE responsibility. Handling a life, with or without good support is a tremendous undertaking. What you describe with your mom’s bag would be so stressful for anyone.
We can’t DO things to help, like bring you food, but we always can listen and let you know that you are doing great. Better than great. Your mom is lucky to have you in her corner. You are doing the best you can and you HAVE to sometimes put on your own oxygen first to help others. So go out to a park and breath for a little while. You can’t make wafers if you stroke out yourself!
May I ask for advice from btdt children? What would you have done differently BEFORE care was required for your parents- ie. any medical forms, estate planning, etc?
My mom is an independent 74 year old- healthy-and we are going to a lawyer this week to do some estate planning,etc (my father passed 1.5 years ago- I should have already done this after his passing, but honestly- don’t want to think about life without mom, so I have been subconsciously putting it off). I’m already on her checking,financials, etc so I can take care of that should an emergency arise. Anything in particular I should address/discuss now?
Thanks in advance!!
great question (and timely for me), @engineermomof2. Will be following as I’m reluctantly moving into that phase of life as well with my not so healthy Dad and the not so nice stepmother…and not sure where to even begin…
@engineermomof2
There are lots of lists, health care power of attorney, end of life forms for DNR or care, joint financial accounts are fine if it is just you, but if there are siblings … Is there property? One of the things that made our life so much easier is that Mom took care of grandma and learned about planning! It was a real help. She had everything in her trust and the trust stated that if both my brother and I thought she should be removed as trustee, we could do it. Her attorney said that was a very very risky clause, but she held firm. We removed her probably 2 years (at least 1 year) later than we should have, but from then on the property management was so much easier.
You can possibly get put on as the designated payee (I think that is what it is called) for Social Security because they won’t talk to you without her. Get joint access to stupid things like Comcast or the phones because stopping them without her on the line is also very difficult and they do not accept POA’s.
So sad for our friends. They are trying to help their elders with wishes that they remain in their home but it’s too much for the friends (S and DIL). They have looked into facilities that can help with the many duties — memory care. Both are over 90 and have some dementia and can get quite stubborn and challenging. The H insists that they are both fine with no cognitive issues.
It’s taking a huge toll on the health of their S and DIL, who supervise caregivers and provide care while both working full-time. I’ve been a family friend for the past 50 years and it pains me to see and hear about the situation.
I remind the S and DIL they have to put on their O2 masks first. The D of the elders is visiting for a week and trying to help. The two older Ss of the couple don’t understand the situation and feel everything is just fine. (Of course they’re not providing care.)
@engineermomof2
One of the important things is having a list of everything, all the accounts, all the places to loo-brokerages, banks, real estate, safe deposit boxes, secret hiding places in the house, etc.
Another helpful thing, for me, is that my parent’s put their home and some bank accounts into a trust, no probate, no hassle, just show the successor trustee info and away we went.
One surprising thing to me, we had parents die less than two years ago and their bank knew nothing until we told them. My mother used the same bank and last week, less than two weeks after she died, there was a tab about handling the loss of a loved one when I logged in. I’m glad I had everything done! When FIL died we had a real hassle with home owners insurance and were glad we got it all settled before notifying the bank he was dead.
Make sure someone in the family has a way to access all the accounts.
Also, have a conversation about what they want medically. I was so glad my mother and I discussed it and agreed, no medical intervention beyond comfort care if her mind was going. She still lived nearly two years longer than she would have wanted. Also, a conversation about when she would and would not want "everything done that can be done;’ essentially, discuss all the imaginary bad things that might happen and how she would want to proceed, knowing that it’s likely only one or two would happen. We found discussing the bizarre and outrageous possibilities made it easier to then deal with the more likely ones, made it all a bit more theoretical.
Another point we discussed was bathing, we agreed, when/if she needed bathing, it would be a shower aide, so that was easy at the time.
somemom, I know what you went through and appreciate the comment. Thanks psychmomma and esobay too. It always helps to write something on here! I am doing pretty well. One of my kids has special needs so I have had practice in setting boundaries and finding things for myself If anyone else is dealing with a colostomy, let’s talk!!
@esobay and @somemom thank you both for the tips! Yes, it is just me, my brother passed years ago…it is hard to handle all myself, but it does make dealing with decisions, land, assets much easier logistically. I didn’t think about cable, cell phone- those are bills I will have her add me to, and we have had multiple discussions about end of life care, burial etc. Thanks everyone for your help!
If your mom is still driving, talk about what will happen when it becomes unsafe to do so, and how “unsafe” will be defined. For my mom, she said when the doctor tells me I can’t drive, I’ll stop. She handed over her car keys to me while we were still sitting with the doctor in his office. I’ve known people who had to resort to taking out the battery because their parents insisted they were safe to drive. Also, have a transportation plan in place for when that time comes. It was important for my mom to know that she wasn’t going to be cooped up in the house.
It’s common to have a hernia some time after abdomonal surgery. My surgeon wasn’t worried and gave me the choice of doing something in advance (mesh) or waiting for a problem. I chose the former, but with your concerns about more surgery for your mom, I just wanted to note you do have the choice to wait and see.
My Dad has a Life Alert type advice. I believe he has Mobile Alert. It has a GPS tracker so if he falls or has an emergency when he’s not at home, it will still work. He also has a lockbox on his door that the alert company has the code for so they can provide it to first responders.
@VaBluebird – My mother had an alert system from ADT. Most of these companies sell two different types for inside the house: one that relies on the wearer to call for help and one with fall detection that will send help when the wearer fails to respond to the ADT attendant speaking through the squawk box. We did not consider the GPS type that @momofsenior1 mentioned above because my mother was always accompanied by someone when she left her house, so it was not necessary to pay the additional monthly fee. (She lived alone but was no longer driving.)
If your parent is out taking walks, or even walking to the end of the driveway to retrieve the mail or newspaper, then the GPS type would be useful. We had paper & mail delivery changed to front door. If you do not need GPS feature, then make sure you get the type where ADT will contact EMS when the wearer fails to respond. The first necklace/transponder was too sensitive, resulting in some false alarms, but a replacement eliminated most of the false alarms.
MIL bought but never implemented something with Medical Guardian. Our main experience with it was in trying to close the account when she passed away. The CSR told me they couldn’t close the account but would pass along my “request.” I was aghast (and insulted, really) and passed that ball right to the paralegal who’s been helping DH wrap up the estate.
I have a sad (ish) story about the Life Alert thingy.
Mom was trying to live alone and was really smart at faking being OK. She therefore agreed to wear the life alert that you had to push if you fell down. She wore it on a lanyard around her neck. Every other day she would lean against the kitchen counter to peer out the window and watch the cars go by and set it off. And they would call and she would not understand why they called but she was always “fine”.
Then, she had the call button in the assisted living place when she was on the assisted side, not memory care. But she still had her own apartment (with the stove disabled). She fell one night and broke her arm and spent most of the night on the floor . She forgot she had a button or what it would do.
So if you are thinking of that sort of thing, I’d go as high end as possible and have the button report falls unless cleared. And GSP if they can get out and about.
Yes, an aunt fell and lay overnight on the floor as she couldn’t get up. Her friend was concerned when she couldn’t reach her and they had to break into her house and take her to the hospital.
I agree that having something that can’t easily be removed by the patient and passively detects and reports falls is important.
Our elders forget why people come twice a day to administer the same medications in the same way—morning and evening. This has been for 3+ years and counting.
So many stories of people who’ve fallen and do not remember to push the button, or don’t want to bother any one by pushing the button, or who just don’t wear it all the time. It’s sad to see.
My mother has no dementia issues but is tech-averse and easily intimidated by gadgets. I’d definitely get something that didn’t require her having to remember to do anything in order to get help.
@HImom Isn’t it ironic that the folks who need MC are never aware of it because of their impairment? I know at my parents’ place, they never use the term “Memory care” with the residents. It’s always “rehab”. We got my parents to go over because they were told it was rehab for mom after her stroke. Sadly now they don’t even remember that they moved.
If anyone else is dealing with a colostomy, let’s talk!!