It’s daunting to navigate the system of elder care. it would be great for you to get some help.
CC is a great forum but there has to be even better ones that answer these questions for someone like compmom.
Anybody know better resources? I know this is very regional but every little bit helps.
Can you PM me the state you are in? I’m curious about those two models! Thanks!
I’m in Massachusetts.
Upset. Sunday I noticed biliary drain wasn’t going. Called ER and spoke to doc who said don’t worry about it chances 99 percent it’s perfectly fine. Go to doc appt who looks st it and says it’s out and can’t be put back in because it’s over 24-48 hours and it’s healed over already. Now we either get lucky and he remains symptom free or we go back to square one.
Now I’m just second guessing myself. Why I think people know what the hell theyre talking about is beyond me. I feel like firing the whole crew of them. Thanks for the rant and support.
Wow @gouf78 What I would do, is ask your doctor who put in the biliary drain (GI?) on who the after hours on call person would be. Typically there is a resident on call for that particular service. Of course, I am assuming a larger medical system than you may have access to. Keeping my fingers crossed he will be OK. What symptoms was he having? Any chance you can come home in the near future? Is it possible you and your sister can trade blocks of time? Elder care is so much more difficult than raising children.
After 10 days in the hospital and 85 days in skilled rehab, my mom moves back to her independent living apartment today. What a huge victory! Even better, she has agreed to put her name on a waiting list for an assisted living apartment, as we all realize that she has a complicated set of medical conditions that she’ll need some help monitoring. No obligation to go to Assisted Living yet, but it is something she is willing to consider.
We’ve made it this far by having one of her 4 kids with her almost all of the 85 days, and private aides there on the other days. The plan going forward is that her kids will make sure one of us is there for the first 2 weeks, then on weekends for the next 2 months to see if she can manage real independent living, not a fictional “independence” with us as her support system. But if things go well she’ll have another few months (or years?) of the quality of life she has been hoping for.
She was weak, dependent on oxygen, and delirious when she got to rehab, and their expectations of her were low. Her family believed that if a couple of underlying conditions were corrected she could go back to her previous activity level. The scary news is that had it not been for our constant presence and multiple protests of a release plan to long term skilled nursing care, she would be languishing in long term nursing care now. The good news is that all the PT and, surprisingly, respiratory therapy, on top of the treatment of the underlying conditions, has left her stronger than we’ve seen her in a year at least. So there is some good that came out of this ordeal, and we all know she needs to keep up her exercise commitment just to avoid losing ground.
Well done @MomofJandL , it is so very hard to know when a downturn is permanent and when it is temporary, and of course, if no one even tries to make it temporary, then it will become permanent, fantastic job all y’all!
@GTalum —I called docs answering service (why is it always a weekend?) and the covering doc was in the ER and returned my call. He should’ve told us to get up there but did not. The radiologist is the one who actually did the procedure and I would’ve talked to him if possible.
We’ll try to share blocks of time as soon as we figure out some semblance of a routine. And hopefully we won’t have any more huge setbacks.
MomofJandl, do you sleep in your mother’s apartment for two weeks?
gouf78 is a bilary drain a naso-gastric tube?
Our AL promised 4 checks of colostomy bag/day and no one came today.
@compmom, she has a 2 bedroom apartment, so we sleep in the guest room. Since her rehab center is on the same campus (a CCRC) we have been sleeping there for the whole year.
@compmom a biliary drain is a small tube placed through the abdomen into the liver to drain bile because of an obstructed bile duct. Very different from a naso-gastric tube.
Good job family of @MomofJandL! It takes so much effort to insist on the appropriate support for appropriate rehabilitation.
GTalum, the nasogastric tube my mother had also drained bile- pitchers of it- due to bowel obstruction, so similar in function in some ways. MomofJandl, I am going to do a CCRC when my time comes- wish my mother had!
I am moving my parents to memory care this week. It is the “less bad” solution to leaving them in personal care.
I am struggling with what to do with the extra furniture and clothing. Some furniture is so worn I am fine disposing of it but there is a cedar chest, desk, etc that I just don’t have room for or desire for. It feels odd to get rid of them while my folks are still alive.
Ditto with a lot of the clothes. I will obviously keep one or two of dad’s suits but he no longer needs 12 of them. And I will make sure mom has a few nicer things for special occasions but she no longer needs all her suits, blazers, skirts, heels etc. It feels odd to donate them behind her back.
I already have 8 or 10 tubs of items from the house sale a few years ago that I am slowly going through. I can’t sore anything more!
I found it very difficult going through my moms things as well. Hugs to you @surfcity.
I have gotten really good at just donating everything. For my parent’s last move, they moved to one bedroom from a 2 bedroom apartment. I called a local charity, which had a moving business and a thrift store, to empty the apartment and marked the things I wanted to move. I found it helpful not even to go through things. If they ever asked about anything, I would tell them I have it at home for “safe keeping” when in reality, it went to thrift. I just moved mom’s stuff. It went to my car and directly to Goodwill. Dad will need to move from their double room to a single. I will have difficulty getting rid of their lovely post modern queen bed and mom’s dresser. I think my daughter might take those pieces or I will get rid of my dresser and take hers.
@momofsenior1 my husband said it was awful putting his (deceased) mom’s clothes into big trash bags for the thrift shop, so I am not sure there is any good way to do this, at any point.
(That Swedish death cleaning is sounding more and more attractive . . . )
Having just cleaned out the home where my deceased parents lived for 54 years, I agree it’s brutal. It was somewhat helpful to think of it this way: their possessions brought lots of joy to them, and now we were spreading happiness by putting them in the hands of others who would also experience joy. In this way, my parents live on in the world.
My Dad put a lot of stuff in storage when he sold his house. My sister and I went through it and sold a few things and donated others. He is in Memory Care and will ask about his stuff and we tell him it is there, even though it is long gone.
I’m just returning from cleaning out that last locker of my mother’s stuff. A drive across country. We did donate a lot. But the remaining things are still overwhelming. I dont even want the responsibility for finding re-sale for some if it.
We need to cull our own things, too. Now.