Shoulder Rehab with Dementia?

Bakerbaker713

My mother with Lewy Body Dementia broke her upper arm with a fall, just below her shoulder a couple weeks ago. At the time, the ortho surgeon on duty recommended "conservative approach" rather than surgery, so we have been resting with physical and occupational therapy in home since coming home after the 2 day hospital stay. Getting her to do the exercises has been up and down, though we have started to get a better rhythm for it. I have been doing the work for her essentially, as the PT showed me after it became clear that she was not going to grasp how to do them or muster the will to push through any pain on her own.

Today we saw the ortho surgeon for a followup, and he recommended surgery for this type of injury with the risk of not doing it being "not having her full range of motion back". However, when I asked about any complications from Lewy Body, he did acknowledge that someone "could end up worse" if they had the surgery and were not able to do the necessary rehab.

After the terrible experience of getting her LBD med schedule thrown off during her initial hospitalization (which resulted in 3 days of manic episodes of intense paranoia, hateful words at me and all the nurses, refusal to let any nurse touch her- requiring me to do every bathroom trip etc, and the general lack of sleep from constant status checks), I am inclined to refuse the surgical route and take the limited range of motion moving forward- especially since it sounds like that is still a very real possibility with surgery.

Has anybody here seen this play out?

harshedbuzz

@Bakerbaker713

IMO, once a PWD reaches the mid-stages, I would not elect to do any screening or procedure that isn't for pain relief/prevention or comfort. If the shoulder doesn't require surgery to relieve pain, I probably wouldn't go there.

Having read your other post, I would encourage you to consider placing your mom in a facility near your home. If she has a home, it could be sold to pay for her care. If she doesn't, a CELA could help you make a plan for Medicaid. FWIW, dad's MCF had an in-house PT who visited dad and others at the facility-- one less thing for mom or I to make happen.

HB

Belle

Echoing what harshedbuzz recommended. I would not put her through anything that is not 100% necessary. Does she have an advanced directive that states what she would want if she was terminally ill? You need to make sure you have her legal documentation in place if she does not have a DPOA and advanced directive.

I saw your other thread on your career and didn't get time to comment but I have been in your shoes with a family member with alz, no one else willing or able to do anything to help, and being at a point in my career that was crucial to eventually retiring comfortably The help I provided for my LO did eventually make me unable to continue moving upwards in my job and that was with a very understanding manager at the time. Can you move her closer to you into a facility? Then it would be easier to keep an eye on things and manage while working. She may resist the move but you are doing the work to make sure she is cared for and you need to do what's best for you too.

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Bakerbaker713

@harshedbuzz and @Belle thanks for your reassurance on the shoulder thing. We did decide not to move forward with surgery, and I know it is the best decision. Her arm is already improving with PT.

@harshedbuzz I am so glad you mentioned the CELA- I had been struggling with the term to google to find someone like this, and now I am finding success!

@Belle for now we are moving her into AL in her hometown which is a few hours away, but potentially moving her to one closer after some time in order to make things easier on us. I also got approval from work to do my job remotely while we get her settled here in AL. Temporary, but helpful. I do also appreciate the reassurance on moving her near us eventually, even if she resists. It would be the best thing for us to be around more frequently as this moves on. Oh and lastly, yeah I uncovered her will and POA this weekend, and am all set there now...@harshedbuzz