Communication frustration

M1

My partner stumbled and fell a couple of weeks ago trying to close a curtain in the MC dining area.  She got right up and wasn't apparently hurt, and they did call me at the time; we decided to just watch her. But since then her back had been hurting more, and she is staying in bed more and continues to isolate in her room.  She has always felt better when more active (typical of rheumatoid arthritis), and i continue to be frustrated that she is being ignored (attempts to change facility is ongoing but that's another story).. My faithful friends and I took her lunch yesterday, and once we got her up and fed her, she perked up and felt better.  I still cannot visit without a chaperone, which remains a terrible sadness and a limitation, so I can only go when there is someone available to go with me.

 But we decided it was time to ask for an X-Ray to be sure she didn't have a compression fracture in her spine. Well turns out they had already done one-and the good news, no fracture. But why the heck didn't they tell me? Additionally, the nurse yesterday also suggested that we increase her pain medication for her back , which i also agree with, but again, if they were concerned enough to X-Ray, why didn't they move on this sooner?   The communication here is just a constant whipsaw. Driving me nuts.  I guess I just needed to vent.

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Jo C.

So sorry, M.  It seems that the lack of communication and follow through has been an issue at that facility since Day 1.  Wonder if having a weekly "report" would help for lesser matters.  This dynamic was an issue with my LO and having the unit nursing supervisor provide a report each week made a difference.  We most often did this by telephone.

I wonder also about the lag time at the new preferred facility in keeping an ongoing communication with you regarding your LOs acceptance for transfer.  That is rather concerning as it has been quite a long time. If beds were full, did they ask for a deposit check to keep on file to be cashed only when a bed and acceptance were complete?  I did this with a facility with their input; this helped me to be confident we were accepted and were simply waiting for a bed to open.

So hope that the new facility feels positive re acceptance for admission.

As for the current facility, with the pain med increase, it is hopeful that they are taking good measures to prevent severe constipation.  Best to check on that if not thought of as yet. Best to prevent highly negative results later. 

You have been doing a wonderful advocate's job despite the heartfelt challenges.  That there are at least good visits when other friends attend visitation with you at least provides those times and that is a start.

Will look for you on the new platform . . . .

J.

Iris L.

M1, since you are an internist, I want to tell you my back pain story.  I have had back pain for many years, initially diagnosed as fibromyalgia, then lupus, then undifferentiated spondylitis.  I have pain all over my body.  Pain meds in high doses help, but I had side effects, so I stopped.  I used plenty of non-drug pain mediation, such as stretching and other physical therapies.  My point is, if she has rheumatoid arthritis, she is always going to hurt.  I devote my time to various physical therapies.  With her cognitive condition, there is only so much that can be done.  But she has to be kept moving.  Being too sedentary doesn't help.  I hope this makes a little bit of sense.

Iris

M1

Oh it makes all kinds of sense iris. she has not only rheumatoid arthritis but severe scoliosis. We have been dealing with these things for years.  It's the lack of  communication that is frustrating, among many other issues.

Jo yes, the other facility is always full with a long waiting list, it's not a given by any means.  They've asked to see her hospital and specialty records. Once those arrive there will have to be another sitdown with their staff before they will even evaluate her.  My deposit with them from last year is still on file. I may get stonewalled again. 

Ed1937

M1, I just want to wish you luck with the other facility. You've had a hard enough time with her without having to put up with a place like that. I'm sorry.

Another Day

I'm not in the same place you are.....yet, but I would have issues with a lack of communication. If I'm not the one to be taking care of my loved one I still want to know what is going on, no holding back. My aunt was in a facility near us and we used to go see her. The people there absolutely love their patients. You can see it in how the loved one lights up at seeing one of the staff/care givers. I'm checking the availability now, it's less than an hour away. That's pretty close for us. 

I must have missed where you told why you have to have a chaperone when you visit your wife. Is that typical? I didn't know until yesterday or the day before that shaking hands plays into this either. My DH shakes all the time, so much so that he had to use his other hand to steady his writing hand in order to fill out some paperwork recently. He rarely writes anything any longer because of this shaking. There's just so much to all of this, how do you keep from feeling overwhelmed?

M1

I think all of us feel overwhelmed at times AD. Ours is a long saga and it's been a horrible year.  There have been multiple and cumulative issues with communication with the staff at this facility. My partner is pretty self sufficient in her adls and therefore doesn't require much hands on care from the staff, but she also only socializes with the staff, does not like most group activities and doesn't like crowded spaces, which has really become much more of an issue during the winter months.  I have to have a chaperone to visit because i am a trigger for her, she sees me and just wants to come home, intensely, and will not be redirected if i am there by myself. This inability to visit regularly is heartbreaking personally and has complicated the communication with the staff and i am frustrated that although they are aware of these difficulties they seem incapable of working with me to overcome it. To me. my inability to be there frequently makes communication all the more important, not less, but my statements to that effect seem to be landing on deaf ears.

In this case, I'm glad they did the xray, but feel like I should have known about it and about it right away, along with any concern that her pain control wasnt adequate.  If i hadn't shown up, i don't know that i would ever have been told.