JOAN’S BLOG – MONDAY, MAY 21, 2012 – REACHING MY LIMIT

My sister and brother-in-law were here from Chicago for a week, combining a Disney vacation with visiting me, Sid, and my father. They roared in here with strict instructions for me to “stop planning; stop running; stop doing; sit down, be quiet, and let them do everything”. It took me a couple of days, but I finally relaxed and let them take over. As was the case the last two times my sister was here, I watched in awe as they went back and forth between my house and the ALF to tend to my father; did my laundry and shopping; lugged Sid’s wheelchair in and out of the car; picked Sid up from Day Care; brought in “take-out” food one night; cooked another night; took us out to eat on other nights; and cleaned up. They tended to Sid’s needs. I thought – “How do I do all of this?” It’s no wonder I am tired to the core, stressed, and in a perpetually grumpy mood.

Although I have often seen with my own eyes, and been aware of the burden other caregiving spouses carry well beyond their level of endurance, I never thought I had reached that point. After all, I do not have to dress or shave my husband. I need to shower him, but he will not let me. He insists he can do it himself, sitting on the shower chair. It takes 2 – 2 ½ hours for him to shave, shower, and get dressed, but he manages it with a little help. But once he sits down, I am on 24/7 nursing duty. All shifts. All day. Every day. Except the two days he is in Day Care for 5 hours. He does not have a hospital “call button”. He has his mouth. He calls me to get his lunch; help with the remote; ask a question about something he sees on TV; to bring him his pain pill; to fill his drink; to ask where I am; what I am doing; if he has anywhere to go that day; to get his newspaper.

The physical therapist has encouraged him to try to be more independent by transferring from his chair to the walker for support and then to the wheelchair. She wants him to use either his arms or his feet to move around in the wheelchair. It will give him some muscle movement, but will not put stress on his painful knees and neuropathy laden legs and feet. So far, even with my encouragement, he hasn’t used it.

On the days he has doctor appointments, or Alzheimer activities, I am driving, lugging either the walker or the wheelchair; pushing him in the wheelchair; telling him where we are going; what we are doing; and answering the same question over and over again.

When I am tired, and want to be left alone to knit by myself, I am driving to an Alzheimer social event because he wants to go and be with everyone. He says nothing when we are there; sits in a daze, but I feel guilty if I do not take him.

There are other issues with which I have to deal, but I prefer not to write about them, as I feel they are an invasion of his privacy.

The end result of me watching my sister and brother-in-law do my work, and them observing Sid’s mental and physical decline, as well as me looking as if I have been run over by a truck, is that I have reached my limit. I feel quite inadequate, as my limit is not as high as so many of yours, but it is mine, and there is nothing I can do about it. AD has forced me to change everything about myself, from how I deal with my husband, our marriage, my social life, my interactions with people. It has been a long and difficult journey, but I cannot, or maybe just refuse, to keep raising the limit of what I can physically endure.

Both my sister and my son, particularly my son, keep telling me that I have done all I can for Sid, and it is time for me to worry about me. The search for a solution begins this week.

I do wonder how so many of you who have no help manage this job. And are alive to talk about it.

MESSAGE BOARD: Joan's Blog - Reaching My Limit

Feedback to joan@thealzheimerspouse.com
Under penalty of copyright laws, this information cannot be copied or posted on any website, media, or print outlet, without referencing the author and website from which it was taken.
©Copyright 2012 Joan Gershman
The Alzheimer Spouse LLC
2012 All Rights Reserved

 CUSTOM DESIGNED SCARVES AND MORE

The material included on this website contains general information intended as information only. This site is not intended to provide personal, professional, medical, or psychological advice, and should not be relied upon to govern behavior in any certain or particular circumstances. The opinions in the blogs are solely those of the owner of the website. The opinions on the message boards are not necessarily endorsed by the owner of this website, and are the opinions of those persons writing the messages. All material on this web site is for demonstration and informational purposes only.           

The Alzheimer Spouse LLC 2010 All Rights Reserved