Moved 85 year old dad with stage 5 Lewy Body dementia into assisted living memory care on August 30th, 2024. Question about expectations!
We have hospice coming in, hospice was transferred from the one we used at home to the hospice recommended by the memory care facility. I am wondering what my expectations should be about the care my dad is receiving and if my expectations are too high?? My dad (me, as POA) is paying a lot for the care but we are having issues. He has a super pubic catheter, and his leg was wet on my first visit the day after we moved him in. Addressed the issue with DON and Hospice nurse and management. Management assured me that aides would be trained on proper catheter care? Shouldn’t the aides already be trained? We are now at two weeks in and experiencing more catheter issues such as aides don’t know how to attach adhesive leg holder, don’t replace dressing over the catheter opening and leave wet straps on catheter leg bag after shower. We also seem to be having issues with his laundry being washed but not dried completely and then clean laundry being put away damp in his closet. Clothing should not be put away damp, it will cause mildew. Am I being unrealistic expecting a resolution after bringing the issues to their attention? This is a 25 unit memory care with only 19 current residents, so they should have enough trained staff along with the hospice people to see that these issues are resolved. How long should I give them to resolve the issues?
I am not hesitant about placing him anywhere as long as I know that they will take care of him. I just want to make sure that we are looking at the right type of facility for him. I’m still trying to figure all of this out. It is so confusing when some places have AL & MC, some places are SNF, AL & MC & some are just SNF & AL.
In my mind, he has dementia so he needs MC…but apparently the Supra Pubic Catheter needs skilled nursing….he wanders and will exit seek if he has a UTI…. So, it’s beyond confusing.
1) Memory Care may not take him due to catheter.
2) SNF may not take him due to dementia and wandering.
So where does that leave us??
Will a SNF be appropriate? Do they have activities and such and are they set up to deal with dementia patients???
He has the resources to pay for any of these, however I am not going to move him again unless I feel confident that they can take good care of him.
is a SNF the only appropriate place for a dementia patient with a Supra pubic catheter, wandering at night, assisting with ADL’s and provide cues to go to dining room to eat?
he has Parkinson’s, age related physical decline and dementia. I believe it is lewy body dementia due to loss of smell 15 years ago, urinary issues since the early 1990’s and can’t verbalize his thoughts..he knows what he wants to say but can’t get the words out …he does say that this is maddening to him and is very frustrated with being unable to express himself. He is able to participate in any/all activities with prompting, he will not take the initiative on his own or even if someone asks if he wants to do an activity as he can’t hear them and doesn’t understand what they are asking. We have to take the approach saying “ come on let’s go do _________” and grab his hand and he will willingly go and enjoy the activity.
He does not require any type of lift, wheelchair or walker ( walker only if he is over medicated and only until the medication is out of his system)
I need input on where do we move forward from here.
He has been in memory care for respite, they accepted him with the catheter and took fantastic care of him for two weeks, would had let him stay but I wasn’t ready.
He has been in memory care at a different facility that accepted him, with the catheter, we moved him there even though it was 1hr 45 mins from my home, but they were not taking care of his needs.
He is now back home with me, we are regrouping and he seems happy about being back home…he helped dry dishes & hang up clothes yesterday….
My dad is home, walking just fine, no problems getting in and out of bed. Does not have to use a walker. Basically the only issues are the catheter and memory loss. He did lose 13 lbs in 6 weeks though, probably from their disgusting food.
We will look at SNF but I really don’t think that is an appropriate place for someone that can get around, can do most if not all activities that the memory care offered (even though they didn’t include him in much without me bringing to their attention) and does not use a walker or need any type of lift.
I’m not downplaying his condition just being truthful and not in denial, I accept that he has a terminal illness, I am sad but accepting and have tried to take the right steps to get him the best care. He was going to dance class once a week and a drumming class once a week in July….the reason I had hospice start was due to a fall in late July/exit seeking/wandering at night and the extra help they offer including guidance as to what the next step looks like. I really think the memory care lied to the other memory care possibly so that I wouldn’t move him…I guess there is a reason that they only had 19 residents when they have room for 25 and with feedback from a private sitter that we hired it was noted that no side or nurse even checked on my dad while the sitter was there.
Will post a further update once the dust settles.
my dad has had some decline since he was there in May, but NOT that kind of decline. So they were determining the admission solely on the records from his current memory care, and basically calling me a liar.
The only thing that makes sense to me at this point is that the current memory care lied on the reports that they sent….again my dad has NEVER needed a mechanical lift or two person assist. At any rate, my dad is now back home with me,
I could not leave him somewhere where they could/would not care for his catheter & lied on their records.
And since the other facility won’t take him based on a lie, I am back to being a full time caregiver. I feel so defeated but am trying to look on the bright side of things though, my dad will get the care he needs in my home until the time comes that he passes or we can trust another facility with his care. So even though my dad has the resources to pay for a high quality facility, it may never be an option since I can’t seem to find one that will meet his needs.
The facility thought a mechanical lift was safer either for your father or the staff or both . The facilities determine when they feel it’s safer to use a mechanical lift .
It’s very likely he gets tired at night and is more difficult to get him into bed , so they began using a lift .
The use of a lift , coupled with the suprapubic cath is usually handled at SNF . I’m actually surprised a memory care facility was willing to take him as a new resident with a suprapubic cath . They must have been really wanting to fill a bed with a paying customer .
Some memory care facilities MAY be willing to keep a current resident on hospice with increasing needs , like the use of a lift . But a memory care facility is not likely to accept your father as a new resident with these needs. In other words you lost the opportunity for the respite facility to take him back now that his needs have increased to SNF level in the past 6 months .
I too think your Dad is passed AL and MC. These are not SNFs and seems that is what Dad needs.
I think you’ll find that no AL / MC will take him under their standard rate, it would mean fees for speciality care if the place has staffing for this. Really he’s best off in a SNF. Try to very clearly let the places you visit know in detail about the type of catheter he has and what you are expecting his care plan to be. The daily care oversight on these are somewhat demanding. Some places will do a hard pass on admission on this type of resident. It’s like for those on a PEG line. Some NH won’t take a new resident with them as the NH is more set up for providing custodial long term care with the occasional skilled care and NOT the daily skilled nursing oversight the catheter or a peg needs. His urologist probably will need to provide a detailed care plan to them so they can evaluate if they can meet his care plan.
The hospice group should have an idea of which SNF in the area would be a better option for him
fwiw the position of Centers for Medicare and Medicaid is that under NH regulations, catheters cannot be used for convenience or be used to replace toileting. This probably means there will be extra paperwork for a facility to do to establish a NH resident with a catheter has its placement due to medical necessary.
I don't think you can expect the staff to watch a few videos and become adept at dealing with suprapubic catheters for your dad, realistically. That's more of a SNF matter for the trained nurses on staff to deal with.
I know how frustrating this whole chaotic matter is to deal with. Then to add hospice in on top, it's really too much. Sending you a prayer for strength and good luck in finding a resolution to this issue.
And this one nurse asked ME if I wanted her to teach me how to change it, and of course I said ah...hell no, but why don't you go back to your office and teach some of the other nurses. I mean you just can't make this shit up can you?
So no I'm sure that the aides are NOT trained at all in supra pubic catheter care as most nurses don't know about them, let alone the CNA's, and I can only guess because they are not as common as the other types of catheters.
I would talk to your hospice team leader and ask them to make sure that whoever is dealing with your dads catheter knows what the heck they are doing. I don't believe that is too much to ask.
And don't be afraid to stay on top of hospice and what they're doing or not doing, as often as you need to., as you are now your dads advocate.
I called our hospice office often to make sure that my husband was receiving the care that he required and deserved.
The catheter issue is definitely a hospice issue for sure as it's the hospice aides that bathe your dad and the hospice nurse that will change it, but the laundry is the memory cares issue, and perhaps if things don't change there you may have to take his laundry home and wash and dry it yourself.
I do wish you well in making sure your dad is receiving the care he needs.
As far as wet laundry, SERIOUSLY? That's freakin disgusting. Do the aides do it or does it go to the laundry department? They must be doing this to everyone's clothing. Ask who you should talk to about this.
My mom is on her second facility (due to moving from AL to LTC) and has been in rehab. There are ALWAYS glitches or things I wished weren't happening or that are disappointing. We're not perfect, they're not perfect. I try to nicely bring up issues and ask for a reasonable resolution.
Best of luck.
I will take your advice to heart.