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When everything changes

 

Question: Two years ago my 76 year old mother had a hip replacement operation. Before the operation she had slight dementia--nothing serious. She came out of the operation with delirium and our whole world changed. She became a complete different person. After six weeks in the hospital we brought her home to live with us (my husband, son, daughter-in-law and two grandchildren). My dad stayed in the city because he refuses to retire. He is afraid he will end up like my mom. He visits on the weekends because we are an hour away. The first six months were good. We all got along and she seemed happy and content. But then the conspiracy accusations started; the constant crying; the lack of trust. One day she is ok, the next she is like a zombie and won't talk above a whisper and cries. When we ask what’s wrong she says we don't act like we did before, or that we’re laughing behind her back. She has accused me of hiding people in the closet, and of having men visit me in my room at night. It goes on and on.

I share a room with my mom—she needs 24 hour care and I am it. I do everything for her including helping with going to the bathroom. She can't do anything herself. I can't leave the room because she gets upset. My family have given up our lives to take care of her but I can't go on like this. My nerves are shot and my son is sick over the stress. We have her on a waiting list for a nursing home but there is a two-year waiting period—and we only started the process last month. Now we deal with guilt too. How can I deal with her outbursts? This is not the mother I know! She was the sweetest woman—someone who would help anyone and who never put anyone out. Now she is selfish and mean, and nothing I do is good enough. I don't want to hate my mom. Please help me.

Dr. Amy: The progress of dementia varies from person to person. In some people, it can worsen very slowly for a while and then get worse quite suddenly. It can seem like, almost overnight, someone has gone from being pretty functional to being totally not themselves. Many people have told me, “I just want my mom back!”

That said, it is possible something else is the cause of her change in behavior, so I encourage you to have your mom thoroughly assessed--including having a dementia workup. Is she in pain? Is there another medical condition at play, or is it really dementia? If it is dementia, it may give you some small comfort to know that it is the disease talking and not the loving mother you grew up with.

Learning techniques to manage challenging behaviors can help. Home Instead Senior Care has developed a series of short videos and other resources I think you may find useful. You can check these out at: homeinstead.com. Just click on the Alzheimer's disease tab at the top of the page.  They have also developed helpforalzheimersfamilies.com. Both are excellent resources. At the same time, there are medications that may be able to control some of your mother's symptoms. It’s a good idea to speak to your doctor about this, when you go for the assessment.

Moving beyond the medical aspects of your situation, let's talk about you and your family. Often, out of a desire to provide excellent care for a loved one, caregivers endure schedules and levels of stress that are hard to imagine. I suggest that caregivers think about how decisions affect the entire family– not just the person who needs the care. Decisions that appear to be good for one person but are not good for another almost always end up being bad decisions for everyone. That’s because caregivers may burn out or may become resentful.

You need help with your caregiving responsibilities, and you need some emotional support. In Canada, The Alzheimer's Society can refer you to support groups in your community. Privately operated homecare companies like Home Instead Senior Care can come and provide some support. A paid caregiver can provide companionship as well as helping you with light housekeeping, meals and laundry. Since you are writing from Ontario, I also encourage you to call the Community Care Access Centre (www.ccac-ont.ca)  to talk to them about services that can help.

You have options. You don't have to do it all yourself. One way to come to a decision about how to balance your mom's needs with your own and those of your family members is to write things down. You might try this: divide a piece of paper into as many columns as there are members of your family. At the top of each column put one person's name, starting with you mom. Then, thinking about the care options you have, such as having an aide come in to help or having mom go to daycare, write down how each option will affect each person. If the picture doesn’t look good for one option, try other options and repeat the exercise until you reach a decision that works best. If you aren’t sure what options are available, the CCAC can help and so can a homecare agency. Remember that the goal isn’t to make perfect decisions. It’s about making the best decision for the whole family in a difficult situation. If this exercise sounds difficult, you might ask someone to help you think it through. A wise friend or family member, a leader of your faith community, or someone from a community organization could help.

It is heart-breaking to witness a loved one’s personality change for the worse. You are feeling a lot of emotion because you love your mom, yet you are giving up so much to take care of her and everyone is suffering. I encourage you to reach out for support now. I send you strength.

 

 

 

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