When Do We Stop Medical Intervention?

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Charlie took a fall several weeks ago but seemed to have no ill effects until several days later, when he began to complain that he couldn't raise his left arm. I encouraged him to keep working with it, in hopes that the problem would resolve itself. The arm was not painful, so he didn't complain about it, but his dementia allowed him to forget that he was supposed to work with it. Instead, he just quit using it altogether.

This went on for a few weeks with no improvement, so I finally made an appointment for him to see his doctor at the nearby Veteran's Hospital.An x-ray of his shoulder showed no fracture or dislocation, so he was referred to the physical therapy department for an evaluation. They determined that he had a "frozen shoulder" and sent him home with a set of pulleys and instructions to use them three times a day.

Charlie is the type who wants an instant cure for any physical problem that arises. He thinks there should be a pill for everything. So he was lackadaisical, at best, in performing the daily ritual. I constantly prodded, but he always wanted to put the exercises off, promising to do them later. Needless to say, when he went back to the doctor for a follow-up, there was no change in his condition.

The suggested solution was to have Charlie see a therapist once or twice a week for supervised physical therapy. We elected to go to a private practitioner for the treatments because the office is more convenient.And so we began treatments that have now been ongoing for over a month, with only moderate improvement in the condition.

Of course, their instructions included Charlie using the home pulleys in between visits and that just hasn't happened.

He can now raise the arm about parallel to the ground but no further. So the dilemma has become: Do we continue therapy through the upcoming winter months or do we call the progress good enough?

He has no pain and never complains about not being able to use the arm fully. But of course all he really has to do is dress himself and push his walker around. Since he has no problem doing either, he is begging me to quit taking him to therapy.

I know I will feel guilty if I give in to his request. I also know that Charlie, in his right mind, would be working very hard to recover full use of the arm. But I am not sure it is worth the battle to insist that he continue a treatment that he wants to stop.

I understand his reluctance. A visit to any practitioner usually means a shower and shave, chores that have become difficult, exhausting and distressing for him. He also has trouble walking from the car to the treatment room with only canes for support. The walker that the Veteran's Hospital provided him is large and clumsy, making it hard for me to load into the car. I have also noticed that he is exhausted when the sessions are over.

The question came up again yesterday. Charlie had a follow-up appointment scheduled with dermatology to check for any suspicious skin lesions. He refused to get out of bed in time to keep the appointment. When I called the office to cancel the appointment the question of rescheduling came up. I made the decision to not reschedule. It isn't fair to the medical staff to keep cancelling appointments when a reluctant patient digs in his heels.

So what's a caregiver to do? When do we call a halt to all the measures that the medical community suggests? Do we just keep our loved ones comfortable and diminish their agitation as much as possible?

It's one of the biggest dilemmas we face as the brain drifts deeper and deeper into obscurity.

Marlis describes herself as a “Gramma who loves technology and has a lot to say.” She blogs about whatever catches her interest: food, books, family and more. For AgingCare.com, she writes about the issues facing the elderly and her experiences caring for her husband, Charlie, who suffers from dementia.

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24 Comments

I am in a similar position. My husband is farther gone than yours. I have to dress him, shave him, brush his teeth, comb his hair etc. He will lose his prescription coverage of Namenda in the new year. They told me no insurance co. is covering it! Is this true for the rest of you out there? I am opting to stop giving it to him as I don't see any benefits of it anymore. He continues to slide downhill. All he wants to do is sit in front of the TV and have me put in his same favorite DVD's every day all day long. I know the words to every movie! Am I wrong for not wanting to pay over $450 every month for Namenda? But I do agree with what you are doing. It isn't worth it to upset the person so much that they are miserable! They deserve to have a peaceful day for the rest of their time here with us! And we deserve a little peace too.
Thank you for raising this question. We try to postpone the inevitable as long as possible but can avoid for only so long before it adversely affects the quality of life for those we care for. My mother had always been a bit of a hypochondriac but when she apologized: "Sorry I can't perform." in regards to her therapy I realized she was just too tired to continue.
Most in the medical professions are of little help because their incomes depend on the bilking of Medicare and supplemental insurances. It seems as if they will drain every ounce of life out of a patient if there is some profit in it.
After recently having a meltdown at the hospital and referring to those professionals as Medicare money mongers operating a geriatric puppy mill I was contacted by the "head" of Geriatrics who informed me my mother should have been in Hospice long ago. This only confirmed my suspicions.
Please put yourself in the shoes of those you care for and show enough respect to allow them to pass on without being tormented by those who have "the best intentions".
When I decide enough is enough I pray someone will be kind enough to let me go and not keep me here against my will. There are times when this is the most compassionate and loving way.
I do agree with you but perhaps since my journey with dementia has already come to an end, I guess I think life is too precious and short to have the types of battles as mentioned in the question above. I just think there are things that we as caregivers can do ourselves and we have to pick and choose our battles to make life more pleasant and comfortable for our loved ones. I am taking care of my 85 year old father now , copd, diabetes , heart problems and mobility issues. We are going thru the PT route again. 2 outside sessions per week. Some days he just doesn't feel like doing his exercises. I have come to realize that exercising 5 out of the 7 days is better then nothing. My nagging to get him up on some days only upsets me and him and I have learned to let it go. Would I compromise at this point with him not taking his medicines? Absolutely not. VWould I like him to exercise everyday, absolutely, realistically is it going to happen, no. Thru my journey with my mom I have learned that everything is not going go down as I would like and to just accept some things in an effort to keep the peace. I remind myself everyday that my goal as a caregiver is to keep my dad safe and feel happy and loved.