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I am Edyth Ann and I care for my mother-in-law whom I will call Milly. I care for Milly along with my husband (her son) and our two teenage kids. All of us living together has presented many challenges and trials. In many ways it has been a building experience for our family. Our main goal is to treat Milly, not as an invalid, but a "normal" member of the family. I would like to note here that this does not mean to be in denial of Milly's abilities, but rather to accept them as normal and adjust for them.

I would like to give you a little background on Milly. Her mother and father both suffered from apparent Alzheimer's and she had some other aunts and uncles that had that disease. Her husband had passed away back in 1984 and the year before he had died he told my husband (their son) that he was having trouble with Milly. Up to the point of us taking her to the doctor, many in her family insisted that she was just trying to get attention or that she always was a little funny. Her family did not agree to let us take her to the doctor until it was discovered that her pastor was taking advantage of Milly and receiving more money from her than she intended to give.

The family and I have made many adjustments to be able to care for Milly at home. Not all these adjustments have been because of Milly's care needs, though her care required many adjustments. Many other things in our lives have been effected because of Milly. We have had to make adjustments to be able to meet the needs of our children, ourselves both as a martial unit, as parents as well as our individual needs/desires. There have been times when we have had to look at what we value most and put some of our desires and interests to one side. We replaced them with other interests and desires that fit within what we really need to accomplish for the time period we are in.

My husband has a business here at home along with his regular job during the week. He has a mobile DJ service and plays music mainly for wedding receptions. He used to see perspective clients here at the house. We had to stop seeing clients at the house because Milly thought all these young ladies were wanting to marry her son. She was very insistent that I beat these women up and defend her son's honor. When I refused to beat the women up she would turn on me and try to beat me up. Now that Milly is entering the final stage of Alzheimer's, we are once again able to meet with some clients here at home.

I closed my grooming shop when we all moved in together so I could care for Milly and still have time to care for the family. Even though Milly is a contributing member of the family, my husband has to work two jobs to provide for all our needs and to make up for the lost income that I would have brought in. Financially we are better off than before but we are by no means rich or even well off. Milly's expense are of a growing type. She requires extra heat in her room, Depends, extra nutrients, lots of additional laundry, we are on our second new carpeting (she totally walked through the new carpet we put in when we moved together) and I could go on forever. The family has had to have time away for respite -- especially the kids. We had to make sure that I have had reliable and appropriate transportation for when I took Milly anywhere. Caring for a loved one with Alzheimer's has many financial responsibilities.

We have had to make sure that we juggle time and attention with the kids. This meant that my husband and I had to select what activities we would do with the kids. He would take them out to the movies, shopping and other types of entertainment. I would go with my son to football and take my daughter to her dance classes and recitals. There were some events that the kids would want us both there. In the beginning I could recruit the help of one of Milly's long time neighbors to stay with Milly while we all went out together. Milly is now entering the end stage and it is rare now that we get to go out as a family and the kids do feel some resentment over it.

The time that my husband and I have together has been severely cut. Even our time at night has been invaded. When Milly was in the earlier stages, she used to come into our room at night, stand at the edge of our bed and just talk to us. She would then turn around and go back to bed in her room. Our room is directly across the hall from her and I positioned the beds so I can see her in bed when I am in bed. Her being able to come into our room has helped her to feel more secure but her timing has not always been the greatest. We have adjusted for this too but we do not get much time together, just for the two of us.

Some of the most surprising demands and resentments have come from areas outside of our family circle. Not too long ago, I had a pastor walk into my house stating that home care was abusive. When I confronted him for a clarification of this statement, he said that the home was not set up with the facilities like a nursing home. He was also very concerned that it was more abusive to the family as we were not free to do what we wanted to do. He seemed very concerned that I was not free to give my time to the church, for instance. I asked him if -- instead of caring for an elderly family member with Alzheimer's disease -- I was caring for a special needs child would he say that home care would be abusive for that child and family therefore that child should be put into an institution. He did not feel that a special needs child should be put into an institution so I asked what was the difference between Milly and a special needs child. He could not think of any but he commented that it is so hard to care for Milly. I am sorry, but just because something is difficult does not mean we should not do it.

There have been other pressures from outside such as the kids' school. There have been a few times when the school has called and wanted me to come and sign in a late child or make another personal appearance for other reasons. I have explained that to demand my appearance is also requiring the appearance of Milly. Then there was the time I forgot my purse when I went to deliver a child to school and was stopped at the local speed trap without my driving license. That offense requires a court appearance. Making arrangements to meet your responsibilities without having to add the undue stress by bringing an Alzheimer's loved one is more difficult at times than one may imagine. I do not want to not meet my responsibilities but would rather work out arrangements that could meet all the needs. It is not impossible, just sometimes you have to be very insistent.

Caring for Milly has not been the easiest thing to do. The last five and a half years have been filled with compromise, sacrifices, tears and resentments. It also has been filled with love, hope, caring, sharing and family. I would have to say that I do not regret it nor do I believe that my husband or children truly regret it or would change it if they went back into time. We have grown close as a family unit and secure in the fact we know no matter what life hands us, we will always have each other.

by Edyth Ann Knox

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Last updated: January 24, 1998

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