Dad this week

Overall, it appears that Dad has regressed a bit in this 2nd week back from the rehab unit...he is wanting to participate less and less in therapy and helping with transfers and such, thus the caregivers are needing to use the hoyer lift. This then becomes a bit of a vicious cycle in my opinion because I believe Dad is uncomfortable with that as well as when he needs to be lifted by the caregivers (sensitive and sometimes crying out with even the slightest touches), and thus he resists even more, making it all the more difficult to move him.

Here is a brief summary of my experiences for the week with Dad since last Friday when I was there with the therapist and we had fairly reasonable success doing exercises with Dad (while sitting) and getting him to stand up with walker in front of him (using electric chair that lifts him.) At that point, the caregivers may have used the lift once or twice during that 1st week.

Sunday---brief visit to deliver medication. Caregivers reporting that Dad would not stand for transfers so needed to use lift.

Monday--therapy with PT...PT reports that Dad seemed to have more difficulty with the standing and less willing to participate.

Tuesday--PT called me in the morning to say she had to cancel with Dad for the day to personal health issues. She mentions that perhaps Dad needs stronger pain meds. I was contacted in the morning by administrator Chris who is concerned that Dad is not participating because he is in pain and that's why he's not participating. She's suspicious of problems with surgery site and is anxious for Dad to follow up with ortho doctor and have an xray. He has a scheduled appt for Friday but I put a call into the doctor I went to the house around 1pm and was there with other administrator, Janice. Dad is more receptive to me and Janice at this visit and we were able to get him to participate in some leg exercises while in the chair, as well as coming up to stand at the walker 3 times. When he is standing, he is only bearing weight on right leg...he has difficulty shifting to put any weight on left leg and wants to sit back down.

Later after I got him, the doctor returns my call and is doubtful there is a problem with the surgery site. He mentions that it doesn't seem too unreasonable that Dad is still experiencing some pain just a little more than 3 weeks since surgery, particularly since he was not that active before. Says it's not necessary to push him too much with therapy at this point, though obviously good to get him using his muscles as much as possible. We also talk about the trade-off between going with stronger pain meds vs the narcotic effect. Suggests tylenol should be adequate (note tylenol with codeine is prescribed and available as needed...caregivers have given it once or twice and no noticeable differences were noted.)

Friday--I went to meet the wheelchair accessible taxi at Dad's house around 9:15 for his ortho appointment. At the appt he required 2 big guys to help lift him onto the xray table. On the table they were trying to put a wedge on one side of him and we were trying to ask Dad to roll a little to his side---when he didn't do it himself, as the technician (and I) tried to help move him, Dad went into his "resistance" routine...He pushes back in the direction of what you're trying to do. Also his face clenches and he sticks his tongue out in an odd way from his mouth. Everyone was doing their best to calm him---it appears to be a very defensive maneuver as if he's dreadfully afraid of something. It's very disheartening to see it. Xrays showed everything was fine. When doctor came to see him, Dad was pleasant, but for the most part would open his eyes to speak to the doctor and/or respond to his questions or to me when I talked to him, but then he would just close his eyes, fold his hands and rest. Doctor and I discussed that we obviously want to continue with as much therapy as possible, but understands the difficulty for Dad to participate with his dementia. He still thinks tylenol is adequate (and better than narcotic if not needed) but also said we could Advil in between if desired.

Upon the return to the house, Anna the caregiver was mentioning how difficult it has been for the transfers and that the morning routine is quite difficult, particularly on Thursdays when it's Al's day off. She said they really don't have the time to do the leg exercises that the therapist had left papers on to be done daily, particularly when it's difficult to get him to participate.

After our discussion, I spent some time with Dad again trying to do exercises, focusing first on just trying to get him to lean forward. His pattern is that he sits in the chair, often leaning to his right side and just digs his back into the chair. Any touches to his arms or back to encourage the leaning forward invokes an "ow" or facial clench described above. With a LOT of verbal encouragement, I was finally able to get him to come a little forward and then finally he was successful coming to a stand at the walker.

Saturday--I went to visit Dad this afternoon and try to do a little therapy again. It was a struggle...my approach as always is to verbally try to get him to be willing to participate in the therapy. He often will agree, but as the attempt is made to move to a stand, he resists and then pushes back. Note that I NEVER force him to do anything, but am offering a lot of verbal encouragement. Today he would start and then say "I can't do it" several times. I respond that I know he can, he is strong, he did it yesterday, etc. At one point I asked him if he was giving up and he said yes. Eventually he did stand up, which was helpful as Al then brought the wheelchair behind him so he could eat his dinner.

I clearly have concerns and questions about the best way to move forward and am fearful about Dad's future and the best way to care for him. I do fear that Dad is giving up and if that's the case, how do we care for him?

I had left a message with Janice, the administrator who called me back a little while ago. We both agree that the ideal minimum goal is just to have Dad willing again to at least stand and support his transfers to make his care easier, and also to avoid the vicious cycle I mentioned above. She did not mention that assistance was necessarily needed, and also wants to talk to the caregivers about doing more with the exercises so Dad will get stronger and at least stand. But she said if he doesn't do that, they will have to use the lift and seemed to be taking full responsibility for caring for Dad no matter what. It eased my mind a little bit because based on some of my prior conversations with the other administrator Chris, I had concerns that perhaps Dad was too hard to handle. I did mention to Janice that I am willing to pursue hiring additional help that could be an extra set of hands that are dedicated to Dad to hopefully give us a better chance of having Dad meet this minimum goal. In my opinion, it does require the right personality, particularly someone with patience as again I think motivation is the key here and it's more important to take the time to get Dad to agree to help himself than just another set of hands to help lift him from point a to point b. Anyway, Janice and I agreed to meet on Tuesday at the house, talk to the caregivers about what they are seeing and the difficulties they are having and try to develop some strategies for moving forward.

Note that It has been a little confusing with me as far as which administrator is responsible for what (Chris vs. Janice) but Janice let me know today that she is the main point of contact for the residents, so she is the one I'll be dealing with (which I'm happy about.)

i'm sorry to be reporting these difficult circumstances. Perhaps Dad just needs more time and things will look better next week...I certainly hope so, but am not that optimistic. Everyone's input and/or suggestions welcome and appreciated.