Questioning My Caregiving Standards

Beachfan

Thanks, Joe.  I suspected the COL in your area was higher than ours (NEPA), thus the difference in MC costs.  My 2 preferred facilities are both slightly under 6K/month and are all inclusive.  They are “sister” facilities, operated by the same company, both about 45 miles from our home.  They are stand alone facilities, serving only residents with Alz/dementia.  Residents typically age in place, utilizing Hospice near end of life.  ( A few move to SNF at the family’s request.)   My son, daughter-in-law, daughter and I have visited on several occasions and collectively we grilled them on every aspect of care.  Like you, I don’t want to have to move DH, once settled.  

I’m not crazy about driving 45 miles in winter or after dark, but the facility in our neighborhood (to which I could probably walk) is selective in accepting residents and two people I know of were denied admission and one was asked to leave.  Their overall approach to care is vastly different than the stand alone facilities.  (It’s an AL with a “memory care wing”.) Having also been careful spenders throughout our lives, it’s a little disheartening to think of paying thousands of dollars for what amounts to about 3 hours per day for the actual hands-on care that DH requires. But we have the means, I’m happy we have the means and if DH is well cared for and content, I will be okay.  It’s all so conflicting; I wish someone else would step in and make the decision and carry through. I get nauseous just thinking about calling next week to maybe finalize the respite plans.  

The only bright spot I can see is that DH would go willingly, no questions, no objections, no fiblets necessary.   He is beyond that level of comprehension; once there, I doubt he would ask or look for me, or ask to go home.  Sad, but true.

Joe C.

Update on my original post: 

When I posted at the end of June I was leaning towards providing DW the best summer possible and focusing on placement in the Fall. So far We have had a good summer with numerous outings with family & friends and another Vermont vacation to the same property we have gone to for the past 20 years. I won’t say that any of these activities were without significant challenges but both DW and I were able to enjoy ourselves and the company of others. In early July I started working on the paperwork the MC requires and looking at option to furnish her room, I really felt I was on my way to making this move.

At that time Covid seamed to be under control in my State with new daily infections counts being in the 30s and 40s for several weeks. In the past month this has done an about face as we all are aware, now the new daily Covid case counts from the 700s to 900s. A local AL facility recently had an outbreak with 33 cases and one death. This new outbreak fueled by the Delta variant has thrown a monkey wrench into my planning. Now I am asking myself how long before the MC facilities start to reimpose visitation restriction. There is no way I can envision placing DW if I do not have free and open access to visit her. I guess I am just going to have to sit tight and watch what happens with Covid over the upcoming weeks/months. This really s@#&s because I can not imagine going through another winter like the last on as a full time caregiver.

June45

Joe C. wrote:

This new outbreak fueled by the Delta variant has thrown a monkey wrench into my planning. Now I am asking myself how long before the MC facilities start to reimpose visitation restriction. There is no way I can envision placing DW if I do not have free and open access to visit her. I guess I am just going to have to sit tight and watch what happens with Covid over the upcoming weeks/months. This really s@#&s because I can not imagine going through another winter like the last on as a full time caregiver.

Ditto. I have also put my plans on hold to place my husband in MC in September/October.

Quilting brings calm

Joe - unfortunately I believe you are correct about Covid being resurgent.  I posted recent case  numbers in Illinois in the Covid and dementia thread.  Chicago ( 200 miles away as I live in central Illinois) is adding restrictions for incoming travelers again. Masks are recommended indoors here for even vaccinated people. My parents AL has required indoor masks all along since they opened for visits.  I expect they will be restricting visits again per the state health department guidelines. First it will probably be the amount of visitors in the facility at the same  time. Then it will be probably be ending indoor visits for the winter. At some point they will probably also tell residents they will be quarantined  after outings except for medical visits.  They’ve just contracted with a NP who will come to the facility  monthly.   

Our county also had a recent supportive living facility outbreak-28 cases. 

 You are within a rock and a hard place. I understand all your points, but you also need to take care of you.   This Covid thing is most likely here to stay for at least another year ( in my opinion). 

Stuck in the middle

I haven't been inside my son's facility in 18 months, due to covid.  Delivery people drop stuff at the door and ring the bell for staff to come sign for it and carry it in.  However, he and I are vaccinated and I can sit on the porch with him and take him on outings.  We didn't get to do that before the vaccine.  He couldn't go to the doctor without a 3-week quarantine when he returned.  So, it is better than before the vaccine.

My situation is dependent on MO health dept rules, YMMV.  But, at least here and now, placement is not dropping the PWD into a black hole.  

M1

I think you are right Joe C.  The scary statistic to me is that 40% of healthcare workers (including those in nursing homes) are not vaccinated.  Until they are, it makes the facilities are very scary prospect.  Spread is almost inevitable given this virus and these circumstances.

Jo C.

Joe, I am so deeply sorry; what a nightmare.  I so hope it does not come to a complete NH and MC shutdown again; that would  really be deplorable.   I despair of the healthcare workers who refuse to be vaccinated.   Why in the world should our LOs be held in isolation and we, the vaccinated caregiving family members be denied access to them when there are hands on unvaccinated staff?  If full vaccination is in place and can be proven, it should be that visitation would be available within certain parameters.

I would not be upset at all at having to register as an "approved visitor," and to show my vaccination certificate if need be; to have my temp taken and to be asked questions at each visit and to have masks mandated, to use hand sanitizer before and after the visit, and to limit visits to one person only at a time, one per day, to a specifica area. To hold our LOs as isolation hostage for months without our not only being able to visit them, but to not be able to assess the state of their care and how they are doing physically and emotionally is a cruel, cruel, cut.  (Our large nearby med center will only approve of two pre-named people who can make a visit, and that person must don one of their masks to ensure the mask is capable and not a reused one that would be "dirty."  Once the two choices of visitors are made; that is it - no changing; AND only one visitor each day.  If my DH visited in the morning and left a few hours later; no second visitor would be allowed access that day.  That would be for another day and then if that visitor came; my DH would not be able to visit that day.  I can live with that.) 

I am well aware that some of the vaccinated visitors can asymptomatically carry the Delta Virus strain; but that means so can any of the vaccinated NH/MC staff from Administration all the way down the line.

There are some MC and NHs that are requiring all staff to be vaccinated; but not enough of them doing that including acute med centers.   What the heck if RNs and care aides are not getting vaccinated?  The height of irresponsibility and stupidity and lack of caring of others.  I should not get started on this.   As an RN, I feel respomsibilty to others as well as myself; I do not understand the thinking behind those care providers; especially licensed nurses who refuse vaccination if there is not a dire medical reason for not having it..  I feel they must be in the wrong field.

May it not come to that and may you find your plans able to be fulfilled.  I so hope that does happen for you; I have always admired your advocacy and detailed caring of your LO, and know that when it is time for placement, you will have made that decision as the best that can be under the cirumstances and that you would plan to continue to care; just in a bit of a different way.

Let us know how this is looking, .

J.

Palmetto Peg

7 years ago you had no way of knowing how your DW's disease would progress.  You made a promise to take the very best care of her that you could.  Sometimes we have to take a different path than we thought we would.  7 years appears to be a very long time in dementia world.  I am at the very beginning of the road, but your situation has made it clear to me that I won't promise to my DH or to myself to do anything other than be the best caregiver I can.  If that means at some time I have to put him in a MC facility, then I want to be able to make that decision without guilt.  

It sounds like you have been a wonderful and loving partner in a very difficult situation.  Why not check out some facilities, and the idea of starting with respite care is an excellent one.  You know the old saying "you always hurt the one you love"?  Maybe she will be better with more social interaction and seeing you as more of a loving friend than the one who makes the rules. It is hard for me to see so far into the future, but I wish you the best in whatever decision you make!

Jeff86

I, too, think you’re right, Joe, to slow-walk the placement decision at this stage, as much as it means you will have to endure longer the trials and tribulations at caregiving at home.  You have been incredibly thoughtful throughout your caregiving years, and it’s appropriate and consistent that you’re revisiting the time frame for this action.

Pre-covid, my dog and I were qualified for pet therapy, and we visited a local nursing home every Saturday afternoon so that those residents who loved and missed having dogs could have some time mine.  That all stopped with the pandemic, of course.  Here in NY where I live there were particularly horrific levels of Covid deaths among nursing home residents.

I was vaccinated as soon as it was available to me, and the sponsoring organization under whose auspices I do this work has set out guidelines (vaccinations, masks, etc.) to resume pet therapy visits.  But the nursing home has not yet green-lighted such visits, and I have to believe other activities that involve bringing in outsiders (musicians, for example) are also on hold.  So the experience of PWD’s in memory care facilities is probably much diminished from pre-Covid times.

Just one example of how not-back-to-normal things are on the nursing home/memory care front, and the current spike in cases suggests the new not-normal will persist.

I’m sorry that what was anyway an agonizing decision may have to be deferred.

French

Here They have just introduced the Health Passport.

You must prove that you are fully vaccinated or tested in the last 2 days to go to a restaurant, to a show, at the hospital, in a nursing home, to take the train…

All people who work with vulnerable people will have to be vaccinated in September. Otherwise, they will be suspended.

In this way, the residents of nursing homes will not be in danger. And I hope they will continue to have visitors.

The law is not going down well because it is a strong attack on freedom. But the vaccination has made a jump in the last few days.

I am at the same point. I have booked a respite stay in September. In Tunisia where they just had a very critical outbreak. I hope it will be better in one month. The second respite stay, in November is near our town but they will confirm at the end of September, and not sure they will have a place after the respite stay.

 This week I have been proposed a place at one hour from here. It is an interesting concept. It is a share home with 8 Al, a caregiver leaving in the house and others coming in the day. I like the concept, but the place was for now, with no trial. We are not ready. other homes like that will open everywhere. It seems that we are switching to something different than MC, that are like jails for Al.