I'm feeling really bad. My mother is worse than I thought and I've been doing this all wrong. I need some advise about dementia.

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Today my mother was finally diagnosed and she is worse than I thought and deteriorating rapidly. When she came to me 3 months ago she had the symtoms of stage one, but today was diagnosed with stage two and the beginning of three. I'm devistated. I just don't know what to do. I've been argueing with her because I didn't understand. Now I feel like crap. I made things worse. She just moved into her cute little trailer in my yard and now may not be able to enjoy it. I hate it for her. She told the doctor she hates me and I'm ruining her life, then comes home and spends the evening telling me how much she loves me. What do I expect now? They are ordering tests for her, so I guess I'll be fighting her to get gaurdianship. My husband just pulled the plug on her van and her new stove. I feel like a pile of shit, and scared I may walk in her steps.


I don't have any answers for you.
My experience this year....
January, Mom is competely independent, shopping, driving, managing her checkbook.
May, Mom was diagnosed with lung cancer, again. She chose radiation and chemotherapy and began several weeks of treatment. Mom is 83.
Several years ago I had cancer, did chemotherapy, so felt comfortable helping Mom thru the process.
Everything I saw over the weeks was consistent with chemotherapy - chemo-fog, weakness, lack of appetite, difficulty swallowing, shortness of breath, sleeping more, etc. She was seeing her oncologist and radiologist each week so I felt all was progressing normally.
I went out of town over Memorial Day weekend. Other family members came to stay with Mom. Mom stopped eating and drinking, but was hiding it (she was putting her Ensure drinks in the pantry so everyone thought she was drinking them), so family takes her to the hospital and Mom is severely dehydrated, had a heart attack, shows signs of dementia, and when she was admitted to the hospital, she went full old-people-in-the-hospital-crazy (paranoid, imaginery people, agitation, the whole thing) and within 48 hours of admittance the hospital called me at 3am asking for a DNR , I was still at my daughters house out of state.
I thought everything had been within the normal range. I mean, she is 83 and on chemo and radiation, I thought she was doing OK........ Boy, did I screw up. I was doing the best I could, but clearly I was not good enough.
Now, Mom is significantly and permanently impacted by the heart attack, COPD, now needs oxygen 24/7, incontinent bowels, and can't get out of bed or a chair without assistance. And she has been too ill to see if the cancer responded to the treatment. What could I have done different? I just don't know, I was doing the best I could.
Mom wants to come home. If I was in her shoes, I would want to come home, too. But today I called the NH and told them that she could not go home unless she was independent, so what I did today, basically, was decide that Mom has to stay in the NH or Assisted Living for the rest of her life. Not a good day.
Have you ever dealt with dementia before? Doesn't sound like it, so you are learning as you go. You are doing the best you can. I don't think any of this is easy or pleasant. I think there is a lot of heartache and sadness. I also think there is a lot of love and caring and, tho you may not feel this way right now, your Mom is fortunate that you are there for her.
I am really sorry you are going thru this. I am really sorry I don't have any answers for you. My only advice is to keep coming back here and ask questions and talk to others - this internet thing has been very helpful and comforting for me. Good luck.
rocketbaby, stage 2 and 3 are early stages for alz. Many people are still able to do well living independently during these early stages. The rate that people progress through the stages of alz varies tremendously among people. People who are able to avoid major illnesses and accidents tend to progress more slowly. Something helpful you can do is have a professional do a safety check of her house. Avoiding falls is so important. You will also give her diet a check. A good diet will help keep her immune system healthy, so she can prevent diseases.

Talk to her doctor about the medication options available. Some people have good results with Aricept, Namenda, or Excelon. (Others saw no improvement. Several were not able to tolerate Aricept.) These medications do not slow the progress of dementia, but may help to improve memory.

If you haven't already, it is a good time to set up finances, POAs, wills, and advanced directives. On down the line she may not be able to do that as easily.

It is a dreadful dx, but you are blessed to have learned it early so that you can prepare. There are many groups that are specific to alz, and you can learn so much on how to cope with it. Does your mother know the dx yet? I wondered how she is dealing with it if she knows. There is a wonderful video series on alz. It is a series of the Alzheimer's Project and is hosted by Maria Shriver. I learned so much from it and can recommend it to anyone. It goes through the lives of people with alz and their caregivers. It also goes through the research being done at that time. It is available on a couple of DVDs through various sites on the internet.

There will be a lot of good times ahead. All we can do is take it a day at a time... and later take it an hour at a time.
Many of us can look back at the pre-diagnosis days and realize we interacted with our loved one "all wrong." Naturally! They were behaving all wrong and we had no idea what was going on. The first thing you can do is stop beating yourself up. Learn as much as you can about her disease and how you can support her.

It is scary when a blood relative develops a dreadful condition. Will you get it too? Maybe. But not necessarily. And all of us who are lucky enough to live a long life are at risk for developing dementia. Take good care of yourself. That is all you can do, but it is a lot.

I know this sounds totally stupid, but do not take it personally when your mother says she hates you. A sanity-saving mantra is, "It is not my mother saying these things. It is the disease." Repeat often!

Was the diagnosis specifically Alzheimer's, or more generically "dementia." Are they waiting for more tests to determine which of the many dementing diseases she likely has?
Mary213: You did the right thing. I know it wasn't easy, but I am relieved to hear your decision. Again, you did the right thing. You've done so much for so long. You are an amazing person. Hugs, Cat

Rocketbaby: I'm no expert in dementia. It can be so different in how it progresses and affects people. Please don't beat yourself up. You didn't know and now you do. So you are seeing things differently and understanding that your mom has a mind which is afflicted with an illness she can't control.

Listen to Jeannegibbs, she has been caring for her husband for almost 10 years and he has a particular form of dementia. Jeanne will tell you that it is important to identify the specific type of dementia your mom has because medications can cause complications. Jeanne's husband has Lewy Body Disease and she can tell you more about that type of dementia. Get back to us when the tests are completed and you have a better idea of what you are truly dealing with.

Sending comfort and forgiveness. Love, Cattails

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