Sunday, July 11, 2010

I'm Not Buying It

I don’t consider myself an ignorant person. I’m diligent in my research, in getting advice, direction, input from those who are more experienced than I, in seeking out every resource and data. And though the feedback is consistent, I’m still not totally buying it. Even with a measure of proof, I still think my mother is being denied more than she needs to be.

We are in the middle of a heat wave here in the North East. Temperatures have gone above 90 for close to 5 days. It’s been unbearable. One thing Mom always hated was the heat. She has no tolerance for it, and neither do I. So this week, Ma stayed in the very comfortable air-conditioned rest home without any outside excursions; we just had many meaningful visits inside.

I could clearly see by yesterday, the seventh day she’s been at the home without going out, that she was calmer, more engaged and less confused. The Director of Nursing and I discussed the almost glaring change in my mother’s demeanor. I saw the benefits. I am not blind.

And then I spoke about an upcoming wedding we are invited to, and visits from relatives over the next two weeks.

“Neither will be good for her Lisa. Your family can visit here or you can take her out. But again, going to your home will be too confusing for her.” She continued, “…and a wedding would be way too stimulating for her.”

And that’s when I lost it…again. Is my mother a prisoner? The disease is already usurping her mind. Now it encroaches upon her ability to enjoy a celebration or a day at my house with family? I just can’t abide by this, I can’t accept it. I feel like a mother whose child is disabled and being told he/she can’t jump a fence or ride a bike. The mother adamantly refuses to accept what she is being told is truth and the child soars to heights no one imagined.

Well, I am not going to sit back and watch Alzheimer’s take everything from my mother. I am NOT going down without a fight. I will never believe the right thing is denying her enjoyment. There has to be some sort of balance. She loves being around her family. Dementia has not changed that. If the venue is too stimulating, we’ll leave. But I am not going down without trying.


  1. Hi Lisa,
    Here is what I see as an objective observer:
    If your mom is calmer, more engaged and less confused maybe it is better to continue what made her that way? I think thinking what used to make her feel better vs what makes her feel better now might be helping you more than it helps her. The heat forced you to have an experiment, and I would use the empirical data of what seems to make her more comfortable, even if might make you feel worse.
    We are about a year behind you with our loved one, so I understand the struggle.

  2. You are certainly in a conflicting situation, based on your observations of your mother's comfort. Is there a happy medium? Can she maybe only attend the ceremony, and pass on the reception? Or perhaps share a video of the event afterwards? Best wishes ...

  3. Watching the struggles my daughter and her husband have experienced for the last 15 years has helped me to come to terms with my own struggles with Elbert and his Alzheimers. My baby daughters middle son was diagnosed with Autism at age 2. He is now 17. An awful lot of the neurological problems with Alzheimers and autism mimic each other. So, I have learned a lot from her.

    As much as he loves going to Walt Disney World he may have made his last trip this year. He now also is bi-polar and at 6'2", 230 lbs. he is difficult to handle. Yes, he loves Walt Disney world. But, he is so much better where it is safe and calm. Things upset him (noises, people). A damaged brain just can't handle a lot of stimulation.

    One question....if your Mom had broken her back and moving about caused her intense pain... but she really wanted to go see family members.... what decision would you make? Just a thought.
    How about they come to see her, in small groups? That would be nice.

    I don't know if I have helped you and maybe you think I am a busy body. I have been in your shoes. It's tough and I hope you can do what is best for her and for you.

  4. Latane, since my blog I've had friends email saying what you have said, framed in the way you have framed it. I am seeing things more clearly today...I was sad and angry yesterday, and very very overwhelmed. My pain is turning into suffering and I'm railing against the disease that is stealing my mother.

    I am reconsidering the wedding but am still not sold on bringing her here.

    You aren't a busy body. I value the advice.

  5. Julie, it is such a struggle. My heart will not buy what my head sees. I just can't get the two in sync. My gut also says that what is happening is too radical for my mother. There has to be a way for her to still enjoy things. I will find it. I won't stop til I find it.

    Thank you for posting. I have been on your blog. I love it!

  6. Lisa,
    I completely understand what you are going through. And I attend a support group where we hear regularly from a doctor who has treated Alz patients for about 30 years. He says, "When you've seen one case of Alzheimer, you've seen one case of Alzheimer." (He refuses to use the possessive form of the name.) So we never really can predict for sure what a patient will do based on past behaviors of others. I imagine the nurse is going on her previous experiences, but even she doesn't know for sure what will happen. I am not here to try to talk you out of or into anything. I just want to say that there came a time for me when the ONLY thing that mattered to me was Mom's mood - was she anxious, sad, angry? Or relatively content? Once I saw her consistently content, I sought to keep her that way - and typically that involved reducing change in her life. And I was able to get to a point where I realized that reducing her outings was not necessarily denying her anything. Because she does not know what she is missing. But I know, always, what I am missing, and that is my mom. And that hurts. And there is no harm in trying to find a compromise that makes you hurt less and gives your mom some social exposure. So much is trial and error with this disease. Yet another frustration...

  7. Momsbrain, you hit it on the head. I miss my mother and that is exactly what I told the Director of Nursing. I know it isn't about me, completely. It has to be about her first and then about me.

    I've come to my senses and agree on the wedding but after talking with the Alzheimers Association again they seem to think one day a week at my house is something that certainly should be tried.

    But now, having all the input about how this is going to negatively affect her, I am scared witless to bring her here.

    Agh, it is such a mess.

  8. In the midst of it, maybe if you can feel flexible, you can go with her flow. Now that she is relaxed at her facility, maybe she can carry that relaxation with her elsewhere. You won't know for sure until you give it a try, and you shouldn't be punished for wanting to try. All we can do is try our best. Good luck.

  9. Lisa,

    We brought Dad here to Hardwick for his 90th birthday celebration on July 10. My brother (who was visiting) picked him up in the morning and returned him to Notre Dame du Lac in the evening. Dad enjoyed his very over stimulated day with his children, grandchildren and great grand children even though he did not really remember who they all were.

    Please let me know how I might be of help. I am working with a group in Dedham called Informed Elder Decisions and these folks are very experienced. I can also talk with the staff at Notre Dame. I would be happy to meet with you and Dan if you desire.

    Glad your blog is back in action.


  10. BP, thank you for commenting and for your willingness to help. How did your father do at Notre Dame the day after the party? Was he more confused? More difficult? How often do you take him out?

    Is your Dedham group an open support group? (though Dedham is close to an hour from where I am). I wish I could find a support group specifically for those who care for parents at home. Do you know of any like that?

    Thanks so much BP.

  11. Lisa,
    I found that my father over time could not tolerate large crowds but rather smaller gatherings of family. He was around people who knew what he was afflicted with so they could work with it. When we went to meet a group at a restaurant I found that I had to explain to people why he was saying the things he was saying and why he feels he knows everyone. People's reaction to him was not kind and I think it frustrated him and made him feel insecure. So this lead to us leaving the party way too early.
    I feel that if the wedding consists mostly of people she knows and you will be at her side the whole time....and your prepared to leave based on her mood...then I say go for it. I compare it to taking a 2 year old to a wedding. I hate putting it that way but it is. So the ceremony...I dont know but the reception...why not. I get the heat issue...I didnt see if it was indoor or outdoor...

  12. Peaches, thanks. I spoke with the Alzheimer's Assoc on this as well. Because the wedding is over an hour away and right when she will sundown, they also suggested she not go. So I am going to do that.

    I realize I am angry...kicking and screaming like a child who is having a tantrum. I need to get a grip. I am totally gripless right now.

  13. 一時的錯誤不算什麼,錯而不改才是一生中永遠且最大的錯誤............................................................

  14. Lisa,

    Saw Dan at tennis yesterday. Heard Mom is in hospital. Prayers are with you.

    Dad did fine here in Hardwick for his birthday and reentered Notre Dame easily. IN fact her was ready to get back there about 6:30PM after the birthday festivities concluded.

    Informed elder Decisions does not have a support group. Let me ask around

    Keep pushing forward.

    Bob Page