@rosered55 THANK YOU!!!
In our area, the Lion’s Club has a warehouse and you can borrow all sorts of home health care devices, it’s great, especially for ever changing needs.
For anyone looking for Medicare to pay for medical supplies, the paperwork makes it long and arduous. First you need to get a doctor’s order then go to the medical supply store for purchase. But you can’t purchase it yet, but it will generate a form for your doctor to fill out. Your doctor will need to answer all the questions and likely will need a face-to-face visit. Plus, your doctor will need to have in his/her note all the elements required for that particular piece of equipment (it’s different for each one!). Eventually, with some back and forth between the doctor’s office, Medicare, and the medical supply, it might be approved. Usually it’s cheaper (unless it’s a motorized thing) and easier to buy on Amazon, Ebay, or scout Goodwill. I found a nice walker at a local thrift.
@GTalum yikes when / if the need arises we’ll just gift my mother whatever-it-is if at all economically possible for us.
We purged a lot from late MIL’s property but kept crutches and walker with exactly this in mind.
Wow! Rough weekend here. I took a little trip over the weekend and my mother lives with us and she is so anxious she just always wants to know where i am. Because I work from home and have a boring 
life, it mostly works. But she was a mess over the weekend, up a few times one night and then talking all sorts of weird stuff to my DH. She slept great the first night and was super strong in great shape for PT on my first day back (she’d been a mess at PT when I was gone) and then she was up 5 times last night and since then is being delusional all day, conversations with people not there, just bizarre. It’s frustrating because whilst it’s not intentional, it represents her attitude of at least a decade, she has always chosen to connect only to me and made me her touchstone, no matter how we tried to push her into more connections. When I am up in the middle of the night and feeling exhausted and frustrated, I am also quite irritated that on some level she has chosen to make me her only person and she has chosen to spend her life worried.
Yep, I’m not always a good person!
She’s in her early 90s and I can do this for a while longer, but, oh my, not if the nights are like last night!
After my husband’s recent spinal surgery, he went home with a rental wheelchair. The PT warned us that if he didn’t return it then Medicare would consider it as a permanent need and his one paid 5 year mobility device need. If he needed more within the 5 years, that they wouldn’t pay. Does anyone know how this works?
Hugs @somemom. I am glad that you got away. You need the break!
@somemom That is so difficult feeling so much responsibility all the time. It’s a tremendous amount of pressure to be her only “person.” I feel that way with my mom too. The best thing I hope to learn from it is to break the cycle. I don’t want my kids to feel anything that I’m feeling these days about my mother. It’s not healthy.
This thread is interesting in relation to the other thread going on right now on this site about not putting off fun and enjoying life while we can. I feel like I can’t get away now because my mother is in tough shape and I’m her person. Who knows, this could go on for years? I do want to enjoy my life. I’ve battled cancer so that I could enjoy life.
@ams5796 and @somemom and others: caring for my mother – and MIL when she was alive – is a major factor in my not living with my husband who works out of state three weeks out of four. We’re both only children, so when he got the job down in the DC area I stayed to manage our home and family up here.
I remember MIL not being able to visit us when DH was stationed in Europe on active duty over thirty years ago. She was caring for her own mother, and there were fewer temporary care options than there are now.
My mother is not yet at a point where my presence is logistically necessary for her care; she still lives independently. I can leave for up to a couple of weeks if I make sure she’s got enough groceries. However, I too am a magical person and my mother will not talk to anyone else on a regular basis. Therefore I make daily “just checking to make sure you’re not dead” phone calls, and we both do the best we can.
Great point about balancing all this with not waiting to enjoy our own lives. When my therapist posited that my goal seemed to be to handle relationship with my mother so I could be at peace with how things went after she was gone, I said that I didn’t want to wait that long and want to find a way to live peacefully with things as they currently are, however they are.
@ams5796 I completely agree, I am now about ten years empty nest. I do believe that I had about three months between my last local kid leaving for a degree far away and my Dad dying such that we took on my mother. And we are now entering our 10th year of her care. These are supposed to be the “best years of your life” empty nest and before you get hit by aging yourself.
The really scary thing is that she would not want this and we are doing absolutely nothing to prolong her life. She and I have had many talks over the years, no feeding tubes, no IV fluids, no Rx for pneumonia if her mind is gone. She even said no spoon feeding if she cannot feed herself. Her appetite, though, is the one thing that seems to remain. She can have a bad day and sleep 23 hours and the two half hours is when she gets up to eat!
She was responsible for my grandma for nearly 30 years of widowhood (and Grandma did not drive) so she was very clear about what she wants, as am I. In the book, Still Alice, I so agreed with the premise, I think I am still emotionally traumatized by her forgetting what she was doing when she went up the stairs. In the same way, my mother has lost her mind (though with Lewy Body, some days she is much more herself) and yet, her body soldiers on. I keep thinking, what if this was me? I don’t want to live this way, but I don’t know what I would be supposed to do about it! She has asked us to help her die many times and that is rough, too.
Praying we all sleep tonight 
I am not sure the weekend away was worth this aftermath and that is a sad place to be.
It’s awful that your return could be so difficult as to make you sorry you had a break. I hope you all get some sleep tonight!
I made the call today to schedule respite care at a local nursing home for my mom at the end of February. I felt physically ill for several hours after making the call. As much as I am desperate for a break, I also have tremendous guilt at leaving her in someone else’s care. The last time I had a break of more than a few hours was October 2017 for 5 days. This time I’ll be gone a week and H will be with me, so I’m extra worried. He visited her daily when I was gone last time.
I know we’ll have fun, but picking her up and reorienting her to our routine here at home will likely be very difficult.
An advantage of my parent’s particular memory loss, is that I am not a magical person. Out of sight and out of mind. They have no memory of my brother who died 4 years ago. Sometimes I am recognized. As to enjoying life – this is the reason I moved my parents a mile away and I pay lots of money for their care. I am fortunate my parents have the means to pay for many years of full-time care. I am fortunate to be able to go on vacation when I can and knowing both that they are cared for and they don’t miss me.
@somemom my mom and I had similar conversations. I know she would be mortified the staff at her home are keeping food diaries and focusing so much attention on getting her to eat because apparently, she is forgetting how to eat. She would tell them to leave her alone and let her not eat. Of course, this is the give and take of leaving mom in someone else’s care.
When you have your loved one in respite care, make it clear to them that they need to 100% cooperate with the situation. Care for the caregiver.
89 YO MIL is in the hospital with UTI and URI. If she was in skilled care she would not be in the hospital, but she is at home with 90 YO FIL with care that comes in plus meals on wheels. FIL is a worrier, and dependent - has been for many years always having/expecting the home work to be by MIL. Now BIL has many things covered with care coming in, auto billing, pharmacy needs (he is a pharmacist). H and one brother live away a great distance. Other brother lives 5 hours away and comes when he can piece together two days off from work and other responsibilities. Tough situation.
Thankfully she slept last night!
I’m glad @somemom. I hope you did too.
happy to hear that!!!
MIL is going home today - so I think MIL/FIL will be happy getting back to their routine. ExSIL even stopped in to help FIL during his time at home by himself…oh my, that was in some ways showing how nice she CAN be, while also making up a little bit for her past harmful behaviors/actions. I think she did it for her children/grandchildren - but it still was good of her.
There is a lot going on for everyone on this thread! Hope everyone got a good sleep last night
I revoked my mother’s hospice Monday. Was unhappy with them, switching to another.
Anyway, without warning us, the hospice tried to take her hospital bed out. The driver came Tuesday and my mother, who has dementia, screamed at him and scared him away. Then and only then, the hospice called me and said they would give us 24 hours. I was picturing my mother on the floor.
I did find a new hospital bed, after a couple of hours of investigating. So the first bed went out at 11 and the new one came at 5.
Every time my mother went in the bedroom or bathroom of her small apartment, she would shriek about where her bed was. She of course couldn’t remember what had happened to it, and didn’t grasp my explanation of the situation, so it was panic for 6 hours. Endless anxiety and questions.
I sat next to her and tried to distract, explained again when needed, and generally helped her get through.
She went to dinner and the bed came. I put the mattress on and made the bed and she never knew the difference.
You never know what is going to upset the apple care of dementia.
@compmom, so sorry for the unnecessary anxiety for your mother and you too! Hoping the new Hospice service will be a much better match for your mom. The medical supply company called me in December, a year after my aunt passed away asking if they could pick up the oxygen equipment, uh, no… that was returned the week after she passed. They couldn’t find a record, so glad I saved the receipt I signed when it was all picked up. It just doesn’t seem to end. Sending hugs to everyone.
This is probably too much minutia for this thread, but wow, DH heard a thump at 4:30AM (I never hear anything, I sleep soundly); he nudged me to check on her and when I got to her room, my mother is laid out on the floor, snoring. So, in the 60 seconds it took me to get there, she fell back asleep or was never awake. I was so tempted to cover her on the floor, but was concerned she would later awaken and start calling out. DH & I lifted her into bed (thankfully she weighs 100#) and she never stirred. Too bizarre. It took well over an hour to go back to sleep 
Sadly, we are all ready for her to be at peace. She often asks if she is in hell, when she asked DH the other day, he asked her why she thought that. Her reply, “because you are here” 