Expert: Mary Gordon - 8/2/2010

Question
Mother has stopped talking she just listens to whomever is talking BUT  yes BUT   when I say, Mother  I love you...she responds with I love you too. (literally) Or I say Mother do you love me...she responds with DO I?  Like you'd better believe it.
If I ask her questions about God she says God is good. Then her conversation becomes garbled.

Some days she sleeps "deeply" in a nod in her wheelchair. The doctor says that her heart is beasting faster and that her heart murmur is louder. She also has congestive heart failure and high blood pressure. She has no bed sores, or broken skins...
My questions? Is she is any kind of pain? Could she be constipated or have a headache and not know it? She is on a pureed diet...they feed her, is she eating because they are putting it in her mouth or does she know she is eating?

I have been with her through every stage...it was the hardest thing to put her in a nursing fascility  but I recogfnized that her quality of life needed to be met in a nursing home...
I do keep loving her and loving on her...does she know that it is me( her daughter) or just another person? She also calls me mama.  The other day I hugged her while she was in bed she hugged me back really tight and patted me in the back ...like it was a send off hug. Does she know that she is in a final stage? I know she doesn't but WHAT does she know?  I rambled  but it hurts and I want to know...what next. I keep her dressed cute, smelling pretty, hair and nails done...I still hurt.n She is 89 years old...and has had Dementia/Alzheimers for about 9 years. She has NEVEr been ill before this  She has always been healthy...she did aerobics until she was 75, swam and ate healthy. Thank you...your last  answer to my zillion questions helped me tremendously.

Answer
Hi Wilma

I know this is very difficult to watch. From what you say though, she seems quite comfortable and tranquil, which is a testament to all the good care and love she is getting.

If she was in pain or something was bothering her, she would be moaning, plucking at things, restless, agitated. If she is just sitting quietly, I suspect she is quite comfortable. If she was constipated, the staff should be able to tell – I’m sure the care facility track her movements since it is one of the ways to tell if she is getting enough fluids.

As to the speech challenges, it is common for the person to repeat certain phrases or even talk garble. My mother in law would often try to tell us things and nothing would come out but nonsense, with repeated garble phrases over and over. It seemed like she thought she was making sense, since she would get quite animated like she was telling us an interesting story. Every now and then, she would come out with intact sentences out of the blue and amaze us. For example, long after she stopped really knowing who I was (she thought I was her sister for a while), and long after she stopped making sense when she spoke, we were looking at a photo album with her, and she suddenly said “That’s Mary’s father.” And she was right!  So somewhere in her head, she not only knew who I was, but who my father was, recognized us in a picture and came up with the words.

Eventually, she got to the point where she said very little, other than an occasional word. Other people will say a particular name or nonsense phrase over and over.

Those kinds of fluctuations are common – it is like a light with a short circuit in it – every now and then it might flash on when you think it’s broken completely. Out of the blue, the neurons will connect, and you may get a flash of the person, a few phrases, a look of recognition.

If she has moments where she can say a few words or phrases, take those as a gift. I know you care about her and it is wonderful that you are concerned. It sounds like she is being compassionately and well cared and that you are doing everything possible for her dignity and to bring some moments of pleasure to her.

She may nor may not really be aware of her surroundings most of the time or who she is with. Remember, most of her memories of her recent life will have been erased. Most of the time, she may have no memories of being a married woman with children. She is like a tiny baby, living in the now. That is not to say she may not know you at some level that you are a loved one – the fact that she calls you mama should tell you she knows you are someone who loves and cares for her and that she loves back.  

I know this is gruelling and you worry that she may be thinking upsetting things, but if she seems content, I think you have to just accept her as she is now. This is much worse for you than her – I think her mind is mercifully free from thoughts, fears or regrets that may disturb her. In some ways, this is a wonderful kindness. You wouldn’t really want her to realize her situation, or be able to think about what might happen next. You want her completely serene and at peace. The time for troubled thoughts about the past or the future are over for her. Like a helpless and innocent baby, you want her completely surrounded by love and comfort - nothing else matters. Not the past or the future. Just love. It’s like a state of pure grace.

It’s hard to say what they understand about physical sensations. It may be that they feel them and just have no idea what they mean or what they should do about them. That certainly seems to be the case with food and drink. They don’t seem fussed at all by eating too little or not often enough, just as some of them will eat too much and too often if they are offered it. I’m not sure they even know what food or drink is.  When they eventually stop wanting to eat even with coaxing, I think it’s because the whole activity is a botherment and they don’t have any idea what it’s about. It’s like being fussed over when you would rather just sit. The caregiver has to be the one to make decisions about food and fluids, and how much is enough to keep the person healthy and their weight stable.  I know some people with Alzheimer’s will react to the tone of your voice, and you ask a question they will answer yes even if they don’t understand the question. That can be a problem in a facility if the staff ask someone if they have had enough to eat – the person may say yes, even if they haven’t, and their plate will be whisked away!

We do know that they lose almost all of their sense of smell and taste fairly early in the illness. Most food no longer has much appeal – it all tastes like cardboard. The loss of sense of smell and taste is why some people with dementia will eat things they shouldn’t, like food that has gone bad. What does remain is often the ability to taste sweet – another reason that some people with dementia will really start to prefer desserts like custards, ice cream and puddings.

What will eventually happen is that she will sleep more and more and become weaker. She will have to be propped up in the wheelchair or in the bed or she will slump or slide down. She will move around less and less - which is when bedsores really start to be a danger, since the circulation gets cut off from not shifting at all. She will be less and and less interested in eating or drinking. Her weight will start to slide no matter how carefully hand fed she is. She will start to be susceptible to infections, as her immune system starts to shut down. Evenually, her organs will shut down and she will lapse into a coma and fade away.

Having watched this with my mother in law, it is not a terrible way to pass away, since they are so mercifully oblivious to what is happening. They just sort of drift away. I’ve told other people that it seems like the person is floating away, like a pale silvery balloon, tied to the body by a thin thread. The thread gets finer and finer, and at last it breaks and the person flies free.

Your mom may have the process accelerated by her heart problems. I know it is unfair and awful that these last years have been taken from her from her dementia. It is so unfair that her body has lived on, but the dementia has taken away her ability to really enjoy the golden years, the rewards of her long life and hard work, and the family and friends who so care for her.

Do just what you are doing. Sit by her, touch her as much as possible, talk to her and tell her everything in your heart, whether or not she can hear or understand. She knows love is near.

Thinking of you.

Mary