Need advice on a problem.

Paris20

My husband lives in an independent living/skilled nursing facility. He is at about stage 6 (AD). He had a stroke on May2. His right side is paralyzed. After a few weeks in the hospital and rehab, we were fortunate to place him in the facility with the best reputation. So far so good.

Before the stroke, my husband just wanted to stay in bed at home. When I left him alone, as he requested, he’d come down anywhere between noon and five pm. His weight dropped. His gait and balance worsened. I realized that I needed to be more assertive so that he’d get up and exercise what is still a healthy appetite. Now the facility is facing the same problem. He becomes agitated and hostile if he’s asked to get up. They’ve been letting him stay in bed so as not to upset him. 

Meanwhile, however, he often misses breakfast. If they leave him alone, he’ll likely miss lunch. They can bring him a sandwich to eat in his room but that’s not the kind of care I expect from a place that charges five-figures a month. I come to visit him almost every day at 10, the beginning of official visiting hours. I stay until lunch is served at noon. Sometimes, when I open the door, I’m hit with the reeking odor of a soiled adult diaper. He already had a sore on his butt. The head staff say they’ll monitor him for weight-loss and sores. 

When my daughter complained, we were told how they want him to be able to make some of his own decisions and not become upset. Someone beyond the midpoint of Alzheimer’s decline is not the best judge of when to get out of bed, or not…to eat, or not. The overextended staff asked me to come later. Today I’ll go from 11-12, leaving when lunch is served at 12. Tomorrow I’ll be setting a date for what I hope is my own minor surgery. 

My afternoons are precious to me. I don’t want to spend all morning anxious about a visit, knowing what I face when I arrive. The afternoon is my peaceful time…reading, doing Wordle and other puzzles, writing to friends and family. It’s my mental salvation. I know one thing I should do is visit less often. What else can I do?

Ed1937

Hi Paris. I remember a post (by Jo C.?) saying that facilities have some type of program where people can express their concerns about care. These programs, if I'm not mistaken, are structured in a way where it seems the patient advocate and the facility work together to make things better, and they are welcomed by the facility. I'm hoping that someone with more information on this will reply.

Rescue mom

You said he’s in independent living/skilled nursing facility. I assume he’s in skilled nursing now, because he sure sounds like he can’t do IL now, or not even Assisted Living (unless they also offer more extra MC like services). But I agree that someone at his stage can’t really make decisions like you describe. Those are things I’d expect a MC or SNF to handle.

I’d think a SNF would manage the things you mention. Maybe more talk with managers/staff would help? 

I feel like something important is missing here…there’s also the factor of being extremely short-staffed, which may not apply, and isn’t a valid excuse, but it’s still a reality in many places.

Add… If it’s IL with Skilled nursing facility, do they even have much experience dealing with dementia? A lot of SNFs handle mostly other, non-cognitive, health issues, and of course IL doesn’t have dementia. It sounds like they may not even know much, or what’s best for dementia (??), especially if the IL and SNF are associated. They just may not see dementia much.

Jo C.

Paris, you have every right to be concerned and it seems your instinct is telling you that there is something that may not working well at the facility re your husband's care.  I think communications with staff and especially supervising staff would be helpful.  A concern you mention is that they feel this dementia patient can make his own decisions for some of his care so as not to upset him; and another concern from what you have writtten, is that the "over-extended staff," in your words, has asked you to make your visits later . . . "over-extended" is a red flag.  Were your visits upsetting your husband or are they asking for your help in feeding or providing oversight and some of the care because they do not have time to do that? 

Question:  Is the staff in this Skilled Unit educated/trained to work with dementia patients?  Not just the licensed nurse staff, but also the aides. If not, this could possibly be part of the issue in understanding his behaviors.

Is there a Family Council Group at your husband's facility?   If so, that can be a helpful point of contact, but not all facilities have them if no family member has started one.  You can ask about a Family Council - if there by chance is one, then ask to have the phone number of the Council leader so you can make contact and also attend meetings.  This sort of group is mandated by federal and state law if a family member wishes to start one, and the facility must make a room and setup available, but the facility staff may NOT attend the meetings; only family members or friends of the resident may attend.  The facility must listen to any concerns brought by the Council as an identified problem and address it.

https://www.justice4all.org/wp-content/uploads/2013/05/Rights-of-Family-Councils.pdf

After reading your input, one question that comes to mind is whether or not you continue to feel if your husband is in the most adequate care facility for his care needs.  He may be; but it seems to be a question.

The facility you describe as being an Independent Living Facility which appears to be their primary service,  also has a Skilled Care section.  Can it be that the facility Skilled Care section is a step-down meant for temporary care of their residents who can later return to IL; or for those with lighter care needs?  Is this Skilled Care Unit actually meant for long term more complex in-depth care needs to the end of life and if so; do you feel they are competent to provide such care with adequate staffing, training, knowledge and experience and is there hands on skilled licensed staff that is also managing and overseeing and assessing who also have adequate experience and knowledge?  If so; is the licensed staff available to you re your concerns?   If so; that is good,  if not, then that may be another thing altogether.

Have you had a multidisciplinary Patient Care Meeting as yet? If not, do they have them? Most states require this be done. In these meetings, the family member(s), the licensed nurse for the patient's care unit, the social worker, the activities director, dietary, P.T., etc. all attend and address the patient's current state and adjust the patient plan of care to meet the patient's needs and goals with all staff working together in the same plan.   You can ask if these meetings are done and if so, if you can request one asap.  (It is my understanding that such meetings are a requirement, but I am not certain if that is federal or per each state.) 

Your husband, being at this point, mostly bed bound, should NOT be going without breakfast or lunch because he cannot make it to the dining room.  In a Skilled Nursing setting, when a patient cannot make it to the dining room, the tray is brought to the patient's room and often, even if short staffed, arrangements are made to feed the patient if that is necessary.  If need be, family can be requested to assist as appropriate and if it is possible.  I have heard of, but not experienced, facilities that when a patient requires feeding, the facility will only continue to care for the patient if the family arranges for someone to do the feeding at mealtimes.  I am not certain that is legal; but do not know.  It is even more difficult staffing secondary to the COVID dynamics which are still affecting staffing in many areas.

As for the skin breakdown; that too can sometimes be a red flag.  It can happen; but just how are they acknowledging and treating it and have the licensed nurses put formal treatment and also prevention action into place in the care plan?   They say they will monitor it, but are they skilled, staffed and actually in tune and knowledgable and prepared to address matters at that level of care need?  You may want to ask them for specifics for treatment of his present skin issue as well as for just what their prevention measures will specifically be in his plan of care.

A dirty diaper can suddenly happen and not have been discovered as yet.  However; if you are finding fecal diapers or overly wet diapers routinely going unaddressed, and if the facility has such smells as a matter of course,  this is a huge red flag for poor staffing or poor staff performance, and possibly, poor staff leadership that does not have adequate performance expectations of staff.

If your husband is refusing to get up, that will be an issue anywhere; but often, the very skilled staff can work around that.  If he has had a decrease in his capabilities, then a licensed nurse can request an order for P.T. evaluation and assistance from the  doctor regarding decompensation - that may help get your husband mobilized as a P.T. will be experienced with such issues and can hopefully get your husband in a better state to accept moving. He may also have an issue with pain or discomfort when moving - or an issue with lightheadedness or dizziness when moving, etc.  This sort of assessment would be helpful to rule out such matters; perhaps a good PT Eval would be able to find out if there are external issues causing much of the resistance or not.  PT can also instruct staff on how to best move the patient so as to lessen resistance and discomfort - this can also be put into a PT written plan of care.

All of this input is actually saying - is this really the best facility for your husband's actual needs as they are now?  If it is an adequate facility, then there are just a few things to address in a good manner through communication.  If it is not an adequate care setting, then it becomes a different dynamic altogether.   It will be your call based on what your observations and experiences are telling you.   I send wishes for the very best, let us know how it is going and how you are.  We will be thinking of you.

J.

Paris20

Thank you for your replies. I have followed many of the suggestions already mentioned here and I’ll try some of the new approaches too. This facility definitely cares for Alzheimer’s patients. It was recommended to us at the hospital, by our PCP, and DH’s neurologist, and PT. Staff have definitely been well-trained. I can see that when I observe them. The facility is a series of what I’d call old mansions near the campus of our alma mater. They are very well-appointed, making the place look like a bunch of B&Bs. Each houses about 8 patients. There is an administrator and an RN who are our contacts about care. Independent living is in a separate building.

I think much of the problem is the short-staffing. On Saturday there was only one person to care for all the residents in my husband’s building. The residents are all incapacitated, all in wheel chairs. The aide had to call someone from another building to help with my husband. Did that leave others without care? I don’t know but I don’t like it. My husband is wheeled to the dining room for meals but if he’s in bed, alone, then we have a problem.