#5  MEDICAL TROUBLES—PART 1

Medical decisions for the loved one with dementia become more troublesome, largely because he or she is unable to help make those decisions.  And, for anyone who is an involved caregiver, there will likely be many of those decision.  My own stories follow.

A general rule is to have medical issues treated as you understood your loved one wanted to be treated before the dementia disrupted their mental functioning.  Of course, that is not simple as it clearly depends upon several issues, especially your relationship to that person.  Being the spouse makes it simpler; even then, it is valuable to consult with other members of the family, especially your children.  That is more complicated if the spouse has children that are not yours.  Agreement among the closest family members is ideal, but it does not necessarily work that way.  In my case, it has helped that our two children have consistently held the same view as I hold. 

And, of course, the obvious principle is comfort, which is generally very decisive.  We both signed an Advance Directive some years ago.  Of course, that included decisions about resuscitation and advanced medical treatment.  We both completed the form the same way.

When it comes to decisions about medical issues, Power of Attorney may become critical in many situations.  The spouse or child who has Medical Power of Attorney may ultimately make those decisions, hopefully by consulting others in the immediate family.  But it can get complicated when someone else has the Financial Power of Attorney.  In our short time in a facility with limited knowledge of family issues of other residents, I know of 3 different cases where children of the resident had major disagreements about taking care of their loved one and much of that related to financial matters.  These issues should be addressed before medical problems happen.  This means trying hard to get your loved one the treatment for a medical issue the way they would want to be treated AND assuring that they are as comfortable as possible.  There should be a clear arrangement in advance. 

And still, though, we have to consider the state of their mind and body with the Alzheimer’s process.  I was once told that, years ago, an advanced Alzheimer’s person in the facility had developed diabetes and that the family had decided not to treat it.   That was surely a hard decision.  In my brief time dealing with this facility, I have seen many different medical issues.  In particular, there was an Alzheimer’s person who broke a hip, had surgery for it, and then could not stay in a wheel chair to let it heal and died; thus the surgery was not helpful at all.  The choices are not easy.  What surgery would you want to have for someone who is so far along with Alzheimer’s that they could not adapt to simple rules for recovering, like staying in a wheelchair?

I learned a major lesson from Beverly’s hip replacement process years ago.  Beverly clearly had mild dementia at that time.  She had a hip replacement and the original hip replacement had a flaw, namely leaving the affected leg notably short.   The physician, of course, had a hard time admitting that his work was flawed.  But then a few years later his office called to say he would re-do the ball part with a more oblong ball to extend the leg the right amount.  The surgery was fine, but the recovery was very difficult.  The reason was simply that anesthesia is likely to be a major problem for those with dementia.  She was much more confused than normal.  She would not follow the simple rules, such as having someone help her get to the bathroom.  When I told the nurse there would be problems during the night, the nurse assigned someone to sit with her.  Beverly seemed to know it was my doing so she was very angry with me and I went home that night feeling sad, This happened long before the Alzheimer’s became more advanced; she was not generally difficult.  Anesthesia brought out great difficulty for several days.

An especially significant medical moment was the fall before we moved into the facility (See Blog # 1). She fell head first down 5 stairs in the dark and landed on the side of her face.  There was no difficult medical decision here; transport to the ER and treat the wounds to the face and the knee.  But it was the precipitating event for moving into a facility, as she first spent time in the hospital and then in rehabilitation.   Following that, it was the right moment to enter a memory facility.

Another issue was a bowel problem, one which caused pain and seemed to never go away.  This had been an issue before moving into the facility, but continued to worsen.  We saw a physician specializing in such problems; she minimized the problem, indicating that there was nothing to treat.  Multiple different approaches to local treatments were slightly successful, but there was still pain.  Months later we found the right physician & the problem was immediately apparent to that expert.  Then there came the difficult decision of undergoing a minor surgical procedure with mild anesthesia,  a procedure with an admittedly uncertain outcome.  Here the right answer for me was to do it anyway, as the outcome of less pain was at least possible.  For some time after the surgery, it did not seem a success.  But after many weeks she became clear of pain.  And that problem did not return.  We should keep pursuing answers, including finding better medical help.

  Other events have led to intervention and Emergency Room visits (at least 5 in the last 4 years).  It is critical that medical personnel in a resident facility have the right sense of how to intervene for minor problems and when it is best to send someone to some other place.  Her doctor and nurses consistently reacted effectively in many situations. 

 CONCLUSIONS:

Your decisions should, as stated above, be based on the standard your loved one always wanted before dementia, especially on their comfort.

And it is critical to continue to pursue medical problems of your loved one—persistence.