JOAN’S BLOG – THURSDAY, SEPTEMBER 25, 2014 – FIGHTING FOR OUR SPOUSES

Before I begin, please allow me to take a moment to explain something about Alzheimer’s Disease. Those of us dealing with it are aware of this aspect, but I would like to wake up the rest of the world to the hidden, lesser known, dark facet of what the general public views as a “memory disease”, and that is violence. It is not a “memory disease”. It is a BRAIN DISEASE. It destroys every part of the brain, piece by piece. Although each patient is different, and not every patient will experience every symptom, many fall victim to aggression and violence. As their brain deteriorates, they may lose the ability to communicate what is bothering them; their perception of threats may become skewed and exaggerated; their confusion may increase. Imagine perceiving a threat, being unable to communicate your fear, and being confused about what is happening around you. When this occurs with a dementia patient, they often strike out verbally and physically.

Coincidentally, while I have been dealing with this issue with Sid for the last month, I have noticed that the message boards have been filled with members facing the same problem. Because of one crisis after another with Sid, I have been unable to adequately respond to message board posts.

This blog will give you a glimpse of what I have been facing, and how I have dealt with it. Perhaps my experience will help you get through yours.

Each time Sid experiences a downturn or crisis during this last leg of our journey, I think that it could not possibly get any worse, but I am proven wrong time and again. Most recently, our situation, as I mentioned above, has mirrored the current discussion on the message boards relating to handling (mishandling may be a better description) of aggressive issues.

Hospice determined that my husband is in the end stages of Alzheimer’s Disease. He has become extremely restless. Moving back and forth in his wheelchair has not been a problem, as the Alzheimer unit of the nursing home is locked and designed for pacing and wheeling. Constantly trying to get out of his chair has been a problem, as he is unable to walk on his own, and has fallen once. In addition to the restlessness, he has become more physically abusive to the staff and anyone in his path. Almost every night, I was getting a phone call informing me of another incident of hitting, punching, or kicking.

If your spouse is in a facility, you will recognize my frustrating, stressful situation of trying to get all professional parties involved in Sid’s care together in one place to discuss how to handle the medication designed to alleviate his aggressive symptoms. Even if your spouse is at home, it is still just as difficult to get all parties together and on the same page related to care and medication. In my case, there was the Hospice doctor, Hospice nurse, Nursing home Director of Nursing, unit nurse, and outside contracted psychological service’s doctor and psychological nurse practitioner. Nowhere in that list do you see – WIFE. No, all of these different professionals played phone tag with one another, changed his medication, then called me after it was done to tell me about the decisions and changes. I know that each situation is different, but I am sure you recognize some similarities to your own experience.

As you can imagine, this did not go down well with me. I expected to be part of the team; I expected to be consulted BEFORE changes were made. It is my right as Sid’s wife, advocate, and the person who cares most about him in the world, to be part of the decision making.

The first day I went to see Sid after the medication change, I literally almost fainted. He was slumped over in his wheelchair, completely unresponsive, unable to talk, eat, or lift his arms. I fed him by opening his mouth and pushing the food into it. When I finished feeding him, I was shaking, holding his head, and sobbing. How did we ever end up like this? How?

The desk nurse, who can only do what she is ordered to do, was sympathetic, and told me that the director of nursing was ordering Hospice to reduce the medication. It took days of relentless phone calls by me to all parties involved, a scolding by one of the professionals (NOT a Hospice professional) that basically I should stay out of it, and let them do their job, constant insistence on my part that we all meet together, before I finally had a meeting with the main parties involved. I stressed that I wanted to be part of the TEAM; that I wanted to be part of the decision making; and that I wanted to be kept informed on a weekly basis with a direct phone call from at least one of them.

We are now going on the 4th week of medication musical chairs. He is no longer semi-comatose, and is eating on his own. However, his aggression is creeping up. Our goal is to keep the aggression down, without drugging him into a stupor. I have been told that due to advancing dementia, it may not be possible to completely eliminate the aggression.

This situation has not played well with my emotional health. I cannot help looking back at who we were as a couple, who he was as an individual, without dissolving into tears and depression at what we have become.

So I continue on. I make phone calls; I advocate for him; I insist on meetings; I visit him and hold the once warm, strong hand that has calmed, supported, and held me almost my entire life. There does not seem to be anything else I can do at this point.

To those of you who are dealing with the same aggression and medical frustrations, I can only urge you to fight for what you feel is best for both of you.

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