Why don’t the doctors seem to believe us about her condition? We have not only talked to both her general practitioner and neurologist when we take her for her appointments, but I have written letters to both of them. We have given them every possible detail of her stories, the dates, times, and place when she has passed out and gone to the hospital, and everything, only to feel ignored. It seems that doctors who truly grasp the condition of someone with Alzheimer’s disease or dementia are rare, and we have had a difficult time getting a referral to such a specialist. It does not seem to matter to the doctors that she only takes her medications when my husband is there to give them to her, so a few days each week, she does not take them. She refuses to take them from me, and I have hidden the pills inside her supper before. With the fights she puts up not wanting to take any medications, I fear for the children and wonder often how to balance that. This has led me into telling her I would fix her a meal and hiding the medication in it right before the children and I leave her house.
I sent a list to her doctors, who unfortunately only see her every three months, of all of her stories and the conditions of things. Her house is always so hot in summer that it causes a one and one half year old child to sweat while visiting. Yet, my mother-in-law insists the minute anyone turns on the air conditioner that she is cold. She wears long pants, socks, shoes, and usually short sleeve shirts, sometimes even sweaters, in her house. This happens then the indoor thermometer reads 90 degrees. In the winter, she refuses to turn on the heat even though we had her system changed over to electric due to her fear of a gas heating system exploding.
Her stories have ranged from the practical such as the environmental considerations above to downright paranoid. For this reason, we wonder if she might be past the initial stages of Alzheimer’s where the doctors think she still is. We’ve heard everything from her wondering if the pastor of our church is still there to all manner of people on the bus she rides around town want to kill her or somehow take her house away from her. We know that whatever it is causing her condition keeps her from always being rational, but we still wonder often how she can present herself so well for the doctors.
Alzheimer Disease is painful for the in-law of the patient. It has caused me; in the midst of wondering what stage my mother in law is currently residing, to go through the grieving process several times over while she is still walking the earth.
As is natural for grieving people, I initially went through many months of denial. At the time, she was saying things that made a lot of sense and still acting as if I mattered. As she declined and forgot who my children and I are, I have progressed in the grieving process beyond denial that dementia and Alzheimer disease have happened. Although the times she does this are very few and far between, they still happen, but only at the times when I am the only person in the room with her, usually while watching television when she doesn’t understand something.
In the face of this, I feel as if I have lost the most. She used to be the one who would have defended me to anyone if it had come to that. I don’t do a whole lot of anything in the ways people expect me to, and I can still hear her words ringing in my head, “You are not a little girl any more, and they should leave you alone.” That used to feel so good to me, and now she has no idea she ever said such things to me.
The more I see her after church and on visits, the more I see her decline now. She often asks me many times within a few minutes when my husband will be up or whether my best friend, who never did so, still drives the bus. I try to remain patient through all of the stories and questions, but it is not easy by any stretch of imagination. This represents a big problem in talking to others, especially those who have not had a dementia patient for a relative, when they try to remind me to stay patient for her sake. It gets even harder when I go places only to be asked about her and don’t feel like answering because I feel left out of the discussion when I am only allowed to tell people how she is doing.
I have lost my most willing babysitter to this terrible disease. His mother still thinks she can watch the children, and it pains me to remind her that even the doctors have told her no. This also causes many struggles to find someone to watch the children for as little as a couple of hours while my husband finishes a work shift and I head off to one of my church activities. My relatives live too far away to come baby-sit on short notice, and many of them still work, while I must also be mindful of the other sitters’ lives and families. Many times, I sacrifice adult time with my own friends by bringing the children along to certain activities where I know the more patient people will be. However, I feel this is unfair to them as well, so do all of the juggling necessary to balance schedules with everyone, wearing myself out in the process.
I often feel as though I am also losing my husband despite the fact that we are still married. Her condition continues to cause him a great deal of stress and emotional pain, which he does not know how to handle effectively. He often through no fault of his own ends up losing his temper and raising his voice with me while talking about how the evaluations have now been done and it is time for her to go to assisted living. When I remind him that help is available through community agencies and all he has to do is go ask for it, he acts as if it’s my idea to “put her away” and take over her house. I also remind him to get her into the assisted living place out of love for him, since I know removing the burden of her daily care to professionals licensed to provide such care would calm us all down to the point of making visits easier in many ways. I wonder as well how much of the patience he once had with the family under our roof would come back once his mother is in proper care. The wonders and fears about what her condition and situation will do cause me much pain and stress as well, especially in trying to figure out what I can say to him without setting off a new firestorm of words.
Another depressing thing for me has been wondering if I really have to give up the things I learned over the last several years to enjoy. When people tell me what they think should matter to me, and it comes off sounding as if I can’t possibly have an identity outside of raising my children and then helping with my mother in law, it depresses me even more. Too often, I am told by people outside my marriage and primary friendships that I barely even deserve those. Why is it that women “need” to put ourselves last under caring for everyone else?