The impact of advancing dementia haunts not only our elderly loved ones, but us too. As caregivers, we are either nagged by guilt that, while sometimes legitimate, most often is not. And we can be literally nagged by our normally loving parent who is slipping away and says things to us that hurt -- but they don't understand what they're doing.
Marcia and Marc are experiencing these upsetting circumstances with their parents, and each has written me seeking my advice. Let's read what they're put in my e-mailbag and see if my thoughts are helpful.
Help! My mother is in a nursing home and has the early signs of dementia. She calls and cries because she is so lonely. I feel so guilty.
When I call her, she acts as though everything is fine, and she doesn't remember calling me earlier. She calls and says she is sick. I call the nurses, and they say she has not been sick. She tells me I should act like a daughter and come see her. I was just there the day before and she doesn't remember it. She says she did so much for me when I was growing up, and that I don't love her and she doesn't know why.
She says someone is stealing her things because they are gone. I have seen her throw something away, then later think it was stolen. Then she gets mad at me for not believing her and forcing her to stay in the "jail" where people take her things.
I do love her. I am taking good care of her. I have to work and I have children, so I can't be there 24 hours a day. Why does she do this to me? Why do I feel so guilty? I know I am doing the best I can to take care of her, but I feel so guilty.
Marcia R., St. Louis, Missouri
Your situation is very frustrating. You still have your mother "with you" -- sometimes. At other times you have a very confused, frightened person you have never known. That's part of the disease.
Try not to feel guilty. I know it is easier said than done, but remember -- as you said -- you are taking good care of your mother. When someone is in her situation, they don't understand everything. They know they didn't put themselves where they are, and they are trying to find answers. She is becoming very suspicious of people because things disappear. She doesn't remember throwing them away, but she did.
Try to remember that she has this horrible disease and she is changing into someone that you have not known before. She looks like your mother. She has the mannerisms of your mother. But her mind doesn't work like it did. Think of a little child who grows up. That child learns something new each day and their mind continually grows. Your mother is doing the opposite. Her mind is unlearning something every day. She doesn't quite understand what is happening to her.
A friend once asked Mom how she was. Mom's answer was, "I'm getting smaller and smaller. Pretty soon I'll just disappear." That may be how your mother feels because her mind is going backwards and she remembers less and less. You can imagine how that makes her feel -- when she realizes it. Good luck, Marcia.
My wife and I have been living with my mother for the past five years. She has dementia. She feels lost, wants to go home, doesn't know us, and is getting to the point that she is a danger to herself.
I spend six days a week working to pay for Mom's needs, then come home and do what I can for her. My wife does help but she isn't the type of person who does well taking care of someone else. I want the best for Mom, and I know I am not giving it to her.
I do not have a Power of Attorney, or anything else when it comes to Mom. Please help.
Marc B., Houston, Texas
You are doing terrific under the circumstances. Dementia does cause a person to become someone different than you have ever known. Your mother is doing all the typical things someone with dementia does.
Why don't you talk to her doctor about the situation? It sounds like your mother needs help 24/7, and he may have some suggestions on how to move her into a nursing home -- or a different place that will provide everything she needs. Since you don't have Power of Attorney for medical decisions but you physically live with her, you can probably make the decisions needed for her care just by the fact that you are there. Each state has different laws, and you need to check the laws in your state, but when I was taking care of my parents, the fact that I lived with my parents made a difference. I didn't have Power of Attorney for medical decisions, either.
There should be a legal aid office in your area, and they will at least guide you as to what to do or who to call. You might need the help of a lawyer. If the legal aid office will help you, it would probably cost less.
Good luck and let me know what happens.