Reality hit me right between the eyes!

CS 63

So, a year or so ago I took an online quiz to determine estimated time for long term type care.  It said a couple of years and I thought things would have to progress quickly for DH to get there. Well today I was thinking,  my Mother is in a retirement residence and I thought about what she is expected to do in a day and compared it to what my DH would be capable of.  It was an eye opener!  He wouldn't be able to get himself to the dining room for meals without somebody helping him, he would have trouble cutting his meat and other larger items.   He wouldn't know when to get up in the morning, he waits for me to get up, and he needs help getting his clothes on the right way.  They would help with his meds but who would help him find his room and once there what would he do with himself as he can't operate a remote to watch TV -which he doesn't watch anyway- dial a number on a telephone or anything else a normal functioning person would do.  It hit me,  he definitely needs long term type care but would he get the same attention there as he does at home?   When I'm here with him he has my attention 24/7, what would the ratio be in a long term care facility?  

He can still shave and shower himself, does a so so job at flossing and brushing with assistance, but needs cues to do so, so these might not get done without reminders. He can help with some things around the house, with lots of patience and instruction on my part.

It has definitely hit me like a rock and has me thinking more about the future and where we might be in a short period of time!

Crushed

yes in long term care they provide those services. DW can't talk on a phone or elsewhere and does not recognize food on a plate. She has to be hand fed, dressed, cannot recognize a TV etc.  She has been that way now for several years.

   She can walk and swallow and that is all.

It go on this way for years.

Stuck in the middle

I get it.  Every little while, I realize there is one more thing my wife can't do.  The aha moments are coming faster now; they used to be months apart.

Nowhere

You nailed it, unfortunately. The care you provide your husband cannot be reproduced by aides. The one on one ratio simply isn’t there 24/7. It’s more like 1on 8 and then only if he makes his needs known. My husband is living in a memory care facility and he thinks he’s sleeping at work or in a hotel. He doesn’t open his door for aides. He doesn’t trust them as he’s paranoid. When he awakes in the middle of the night with heartburn, delusions, leg cramps he doesn’t know help is available. All his ADLs are in place except his memory. If he doesn’t remember to brush his teeth, they don’t get brushed. Period. Stark stinking heart breaking truth. I burned out caring and live now with the guilt of the hell I know he’s experiencing.

Bhopper

Time 

I think the time has passed for waiting for the time. Recent trip to Neuro new to DW due to original Neuro schedule so full. Doc was so impressed with physical attributes that she overlooked mental deficits initially. I could see the shock in her face immediately recommended in patient memory unit evaluation in addition to probable SW evaluation to see if she should be alone for any period. My wife only acknowledges she needs help to me with getting dressed and resist care taking currently 5-6 hours per day during week. It’s a battle most mornings to get  her to accept the helper but usually settlers in. While observing the test I had to also acknowledge how much she has lost especially in the recent past. My son and closest family and friends have suggested facilities in the past and prior to COVID restrictions being lifted it was not even a consideration. Her understanding of time has really declined so if I attempt a shower or phone call while it’s only the 2 of us the constant “where are you or why didn’t you tell me “start up she has obsessed over facial features picked at her skin. This is the minor list getting lost in time and space is new and scary I have motion cameras throughout the house and they are a lifesaver but also force me to see everything that scares me to death. Most recently sleeping patterns have changed and she will get up at night. The wandering and looking for something or nothing. Our conversations have become when will I get her haircuts and nails done or can I fix her nose “take it off” I feather time has come that I am keeping her home for me. I have located a outstanding Mc facility and spoke with various resident spouse all great reviews. Located and purchased a very inexpensive location for myself in order to fund the very expensive but seemingly very good facility just so conflicted. My heart says hold on but my realistic side tells me I may be hurting her more than helping. We. Purchased a place in the county much like where she grew up old and needs a ton of work hopefully on good days I can take her out and spend time together but as it is not our current home hopefully the return to facility would be a bit easier. Every facility we have visited has evaluated her as MC appropriate. We have 2 coming in the next 2 weeks please wish us luck and any thoughts are welcome! 

Thank You BH