Expert: Mary Gordon - 3/2/2010

Question
I am so grateful that you are here...I have been my mother's caregiver for 8 years literally. She spent five years with me caring for her at home. I was able to do that and work too. My husband was a great help. Then when she began to wander or I was afraid she would harm herself I put her in adult day care. We both had fun with that. She called it " going to school" She was 80 years old then( I think) I get confused. Then when I was no longer able to take her to daycare because she was not able to NOT soil her clothing... and could not toilet herself I had to do the hardest thing I have ever done in my life place her in a nursing facility. It hurt because I remember promising her when she was 60 that I would never do that. I learned Never say NEVER. She has been in a nursing home for 5 years now. She is very healthy I think ...but she does have congestive heart failure.She has gained a lot of weight. She has never been sick a day in her life nor had any surgeries except childbirth three times but her inability to walk and talk hurts me to my heart. She did aerobics until she was 75 years old...she swam and did the exercise.My question is this. I know that she really does not recognize my face but I know that she knows my voice still so I sing to her I read to her and I pray directly in her ear I can tell that she knows somehow that it is my voice or my spirit. I hurt also because the garbled speech that I appreciated is now gone. Oh yes she is 89 years old...I am asking if this is progressing in such a way that I can tell that she is almost at a final stage or is she at a final stsge. Sometimes she can fed herself and sometimes she has to be fed. She picks up the food on the fork or spoon but sometimes misses her mouth. I also hsve to tell her to swallow because she has forgotten how to swallow. Jusat help me understand that this horrible disease is not causing her any pain or fear. I give her the integrity that she deserves. I keep her hair done and her nails polished. She wears cute outfits...I just want her to know thst I love her...Sometimes when I say.. I love you...She says I love you too Mama...She calls me Mama...Why?
She has no bed sores nor is she bedridden. They get her up daily I lotion her body on a daily basis  Yes I go to the nursing home daily...sometimes at different times( you know why...right) All I want to know is is she suffering in her mind...or is she confused?

I thank God for you being here for me...

Answer
Hi Wilma,

You've had quite a journey. I know this is heart breaking to watch, but I truly believe this is much more difficult for you than her. At this point, her brain damage is a merciful thing. She’s like a baby – she’s really not able to think complex thoughts. She is living totally in the now –and yesterday and tomorrow mean nothing to her. She can’t torture herself with fears and worries about what happened in the past, or what might happen in the future.

She also can’t think through what physical sensations mean – so she can’t anticipate what might come next and be scared.  That is why they become incontinent and also why they often don’t eat and drink enough. You would feel sensations in your body, and know what they meant and what you needed to do about them. She no longer has that ability, even though they seem so automatic and obvious to you. She also is very unlikely to have any conscious thoughts or awareness of where she is. Her surroundings are a big blur to her. She could be anywhere at all, and it would all be the same to her. She can’t recognize anything, much less think through what she sees to come to any conclusion. So believe me, she isn’t upset with you about being in a nursing home. You did not do this to her. This terrible disease put her where she is, and that is not your fault. She really is like a tiny baby.

Stop kicking yourself about having to place her in a facility- you did the very best you could, and that includes knowing when you have reached your limit. Your real job is to love her and look out for her – to make sure she cared for and safe and well treated. That doesn’t mean you have to do the physical caring yourself. At a certain point, the heavy physical care they need, and the 24/7 support and supervision, becomes too much for most families. Family homes are just not set up to look after a person with advanced dementia – and your mother would never wanted you to make yourself ill with exhaustion and stress trying to keep her at home for years on end.  Instead of loving her, you would have ended up resenting her, and that is not what she would have wanted at all. You made a commitment based on who she was at a particular time, based on what you could imagine the future holding. Circumstances have changed entirely. I’m sure at the time you had the conversation with her, neither of you ever thought she would end up in this situation, with things getting worse and worse for years and years, and her no longer being the same person she was earlier in her life.

You are doing everything possible to make her feel loved and cared for. Like a baby, she will love to be touched and hugged and talked to and sung to. She knows that you are there and that you care, even if she is not exactly sure who you are. Be glad she thinks you are her mother. That means she knows you are loving family. Remember, her poor injured brain has erased most of her memory, so she probably has no conscious thoughts about her adult life, her marriage, having children – she won’t realize she is an old lady. Somewhere in her mind, she at least knows you are familiar and someone who cares. That is a kindness.

My mother in law forgot she’d ever been married earlier in the illness than where your poor mom is. She started signing her maiden name, and asking where her parents were. She had no idea who her late husband was when she saw pictures of him, and when we told her, she was upset that she was apparently married to a strange man and told us she needed a divorce! At one point, she decided I must be her sister, which probably made sense given that she didn't know she was old enough to have a middle aged daughter in law. At least she knew I was family.

You will know when the end is getting close. She will have lost her ability to walk entirely and won’t be able to do anything for herself.  She will become very weak, and won’t be able to sit up on her own and has to be carefully propped in a chair or in bed. She won’t be able to hold her head up. She will start to sleep more and react less and less to what is happening near her. She will eat and drink less and less, no matter how carefully she is hand fed or how often food and drink is offered. She will start to lose a lot of weight and develop infections.  This does not mean she is suffering at all. It really doesn’t seem to bother them at all. In fact, they seem much more bothered by efforts to feed them. Their organs begin to shut down, they lapse into a coma, and they drift away. It is very peaceful and gentle. I know the process sounds brutal, but I genuinely believe you will suffer much more than she will, since she will not really know what is happening to her.

What you need to do now is consider what you want for her final months, when the end does come closer. She is not immediately in danger - they can surprise you with how long they can survive in what may seem like a very frail condition. However, it is very unpredictable, particularly with her heart problems, so it does help to have your thoughts together about what you want for her and what she would have wanted for herself.

Have you discussed options for her with the doctor and the nursing home? Do they offer palliative care options or hospice programs? If she has a crisis, do you want her taken to hospital and subjected to tests and procedures? Do you want her resuscitated? Tubes? Restraints? Or do you want her kept free from pain and distress, kept comfortable and allow nature to take its course? Only you know what you can handle, what your faith and culture thinks is appropriate and what her wishes were. It’s something to think about and discuss with other family members. Whatever you decide, be brave. This should be about what is the kindest and most loving thing for her, and not about anyone’s fears. There can be worse things than passing away gently when it is your time.

She must have been a wonderful mother, and she is so, so lucky to have such a concerned and caring daughter.  I know this is hard to watch and your mind is working all the time, but all you can do is what you are doing. You are making her life better by being there and doing little loving things for her to make her comfortable.  That is everything that matters to her. It is what is truly important to us as human beings. To be loved and cherished, and have someone there to make sure we are well taken care of and not hurting or in distress.

Hope this helps. I’m thinking of you.

Mary G.