partyof5, it is sad and tough to see changes, no matter the age. Hugs and support.
I thought my mom wouldn’t come back from the flu, and a major weight loss at one time, but she did. so don’t lose all hope. And capture as many good memories as you can. little videos on your camera will be nice to see in a couple of years…that sort of thing.
I’m flying home to Austin tomorrow. I’ll be there for 12 days. The main goal of the trip is to make my sister feel that she’s not alone in taking care of our parents as they get older. We have an appointment with an Aging Life Care specialist next Tuesday. We’re hoping to start organizing my parents’ house, but that will be a long-term job! Their house is huge and they even have a basement, which is unusual for Texas. Over the years, stuff has started piling up everywhere. We’re fortunate, though - Mom and Dad are already on the waiting list for a nice facility, and money is not an issue for them. They’ve really been thoughtful about how to make things easier on my sister and me.
The plus side is that I will get to see the Longhorns play football and baseball while I’m there! 
@MaineLonghorn - We used an estate sale company to help sort through my parents’ house. I went through all my mom’s stuff, helped my dad with paperwork stuff, and then we marked stuff that would stay in the family. The estate company is taking care of everything else. They basically would do as little or as much as we needed. Honestly it was a big help and made it less overwhelming. They also coordinated and arranged for the move of stuff we were keeping.
Thanks for the advice, @momofsenior1. It does seem rather overwhelming, so that’s good to know. My BFF since junior high just went through this with her parents, and she said she would be glad to help out.
Another piece of advice - check pockets and nooks and crannies. We found $100 bills “hidden” in my mom’s lingerie drawer, gold rings in pant pockets, etc…
^Good idea! My mom has been losing things constantly for the last couple of years. They have to be someplace!
My mom was too! Years ago my dad berated her for losing an expensive watch. It was stuffed inside a pair of old panty hose! I’m sure she kept it there to keep safe and then forgot about it.
I won’t tell you where they live, but I will say that a relative on my ex’s side of the family keeps a very large amount of cash in the house, in a “secret” location.
We had an auctioneer come and tag everything that he could take, then took stuff to a higher end consignment store, then donated to a charity used goods store. One thing that helped was getting a storage unit. For memorabilia and other things that could not be thrown out, we used the storage space, which gave us more time to go through it without delaying sale of the house.
I put my mother on hospice services yesterday. I never thought I’d say this, but what a relief.
They ordered a hospital bed for her and she perserverated for hours, calling me 8 or 9 times and my brother 4 times, to say she liked her current bed and why did she need the hospital bed. I kept telling her she could keep her bed and just try out the hospital bed then send it away. The delivery guy unexpectedly called, a block away, and I raced to the AL to make sure she accepted it. By the time I got there, no one in the facility could find the darn bed. Turns out my mother said no to the driver, but has absolutely no memory of doing so. That said, the calls stopped.
She is in bed until 11, again 1-3, and then at 6 and is eating very little. The mass or infection or whatever it is in her belly (new CT with contrast shows abscess and perforation) is not hurting her, so antibiotics were palliative.
She doesn’t have to be near death of course, for hospice, but have a life limiting illness and be declining cognitively and medically.
It sure is nice to have some competent folks on board. My mother has more company now each day, soI went to art class yesterday! I got a bunch of calls during the class but still, felt like a person in the desert getting some water!!!
My grandmother was on hospice for nearly 2 years. Definitely doesn’t mean the end is imminent. We also found great comfort in their expertise and support. I felt like it benefited the facility staff as well.
FWIW, we never called the hospital bed the “hospital bed”. We called it the “adjustable bed”. If we needed to clarify, we add something to the effect of “like the really expensive ones you see on TV”. ; ).
My MIL has been in hospice for several years! She’s 94. She’s tough!
My mother has been on hospice for 11 months. The nursing home is amazed that she’s still with us. She turns 97 in a couple of weeks.
@compmom Sending hugs, your mom is not in pain, and you are experiencing some peace. This is the best outcome under the circumstances.
Well, yesterday I decided to call indurwrcti find out when the checks to partially reimburse for the $2600 hearing aids were arriving. Had a chat with the CS agent and she said one was mailed Nov 9 and the other was denied as it was a few days shy of 60 months.
I said fine, would you prefer I return the aid and re-buy it today, as it is now 61 months from the last pair now? She said I could appeal or she could appeal. I said I’m fine either way, just let me know and I will do it. It makes no difference to me but will just generate more paper on their end either way.
I also mentioned that both folks got their hearing aids together 5 years ago and this time around. The insurance CS lady asked for a bit of time to see if she could reprocess on their end, so I said, “fine.” Am going to Costco today with folks to have hearing aids rechecked and adjusted anyway.
I am constantly educating folks about hospice and that their involvement does not mean imminent death! So glad that so many of you had those services and your parents well past that 6 months!
I did their volunteer training and volunteered a couple of years ago and am now on the other side.
Happy about the way thing are going.
Thanks all! The support of this forum has helped a lot.
@compmom what a journey for you, and you also managed to get the house affairs in order. What a wonder woman. I am glad your mom is without pain. Just a note about hospice, my local hospice will not accept just declining mental function. There needs to be a significant decline in physical function as well, such as not being able to raise your head.
momofsenior1, good point about “adjustable bed” versus hospital bed except my mother looooves the hospital. She cries when she leaves. All she talks about is having breakfast in bed in the hospital so she liked the idea of a “hospital bed” with a table built in. We were going to request breakfast for her from the AL the first day.
A little humor: the guy at the bed company called me at 9pm last night apologizing that the bed had not been delivered yesterday. I asked what happened the day before when I had guided the driver (who could barely speak English) by phone to the facility. The guy on the phone had no idea what happened. We know the driver entered the lobby with the bed frame and was told the room number. After that, the main possibility is that my mother yelled at him that she didn’t want it, but doesn’t remember.
Okay here’s the humor: after that encounter, the driver quit!!!
I told the company guy humorously that next time I will make sure to be there to protect his driver!!!
GTalum, our local hospice requires both cognitive and physical decline. I was surprised to learn yesterday that her main diagnosis for hospice is dementia. She has cancer or untreatable diverticulitis, congestive heart failure and other issues going on. I think the decline they are focusing on besides dementia is increased time in bed (she is only up 4-5 hours total), eating less, gigantic leg swelling etc. Family is mainly concerned with colon. This means she can still have meds and appointments not related to dementia, covered by Medicare.
The colon abscess can rupture or bleed and there is also a perforation. The surgeon told me that something “horrific” could happen overnight and asked what we would want to do. Well, we would call hospice and avoid 911 and the ER. The ER doc pretty much told us to do that too, so all are on board. I changed the MOLST yesterday to remove the okay for transfer to hospital. I can override it but hospice recommended not having it on there (or artificial hydration, CPAP). We already had refusals on there for everything else.
So many nurses, therapists and doctors have a knack for the almost flirtatious banter that gets though to my mother, who is feisty. My only worry with the hospice nurse is that she was a bit earnest and talked to my mother like a child. If the fit isn’t good, we can change, but hoping the nurse starts to get it. The nurse also explained too many details. net result: my mother went back to bed!!!
@compmom - you are navigating so much, so well. And it can make one weary some days. Hang in there.
As to the hospice nurse, sometimes there just isn’t a fit and sometimes it’s a matter of cuing them as to what may work best with your relative. I requested a different hospice nurse for my mother because of a style mismatch and a an problem with understanding medication issues. The hospice nurse always spoke to DM in a loud voice, with the tone some would use with a pre-schooler. Not a match for with for a with it, soft-spoken person. Their exchanges were painful to watch. Hospice was most accommodating. I knew it wasn’t a mismatch that could be tweaked.
All the best. Hospice is an excellent resource.
Thanks travelnut. It’s uncanny- exactly the issue. Speaking in a loud voice with a tone one would use with a preschooler! Noone else who has cared for her has acted like that. And she has a hearing aid that is somewhat effective!
My own ears hurt from the loudness. I am no spring chicken myself!!
It was also strange to mix that manner of speaking to her, with excessive medical explanations and details. Kind of a contradictory approach. It works better to do medical questions with me (has she had pain? my mother will answer no if she had agonizing pain 4 times a day including ten minutes ago but not at this actual moment). Then exam and funny banter/teasing with her.
We’ll see. Nurse is nice, concerned, competent but it is reassuring to know that your hospice didn’t mind a switch.
We are losing a visiting nurse and PT from another organization and even I am having trouble with that. Transitions are hard. Giving it a chance! And no new bed- too much change for now. The drivers can breathe a sigh of relief!!!