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The Mummy Update

by Nancy Wurtzel on March 12, 2013

Friends and followers have been asking me for the latest news about my 92-year-old mother, whom we affectionately call Mummy.

Mummy has shown signs of dementia for about five years and is in beginnings of severe Alzheimer’s disease.

After moving into assisted living last fall, Mummy’s symptoms worsened significantly and she continues in a downward spiral. Communicating has become quite a bit more difficult as Mummy rarely talks anymore.  Sometimes, we can guess what she want to convey, but not always.

Occasionally, she will say a few words, or much less often, a complete sentence — usually when you are least expecting it.  Most often, Mummy is simply very quiet.  Quiet and with a grim expression.  Like she is going through the motions of life, but doesn’t enjoy it anymore.   Sometimes, I’ll try hard to get a reaction or smile and be rewarded with one, but her ability to understand and interact with the world around her seems to be fading away bit-by-bit.

In the place of social interaction, Mummy has adopted some repetitive behaviors, which can go on for hours and hours and pretty much fill up a day.  While I’m well aware these repetitions are part of the progression of Alzheimer’s, it is still difficult to watch and impossible to stop.

Mostly, Mummy seems mild, but there are flashes of anger that boil over.  Usually, it happens during toileting or showering.  We try to work with the staff to avoid confrontations which will only make the issues worse.  We’ve come to the conclusion that good enough is good enough, and it is alright to lower standard a little.

I’m no longer certain Mummy knows who I am.  I think she knows I am one of her daughters, but she probably doesn’t know which daughter.

The list of activities that my sisters and I can enjoy with Mummy is now so short.  Eating, sleeping and repetitive behavior has basically become her life.  We do still play cards with her, but the rules have been thrown out the window.  It’s now a mesh-mash of rummy and other games.  Mostly it is improvised, each hand played a bit differently.  We continue to play because it is a familiar activity, one she always loved, and I think she still enjoys it.

One thing is for sure, Mummy does enjoy having her hands and arms massaged.  She will almost purr like a kitten and sometimes even naps when I’m massaging.

Sitting close on the couch and looking through old albums of photos is also a nice way to connect.  My oldest sister bought Mummy a portable cd player so we can put on 1940s big band music or some Frank Sinatra.  It helps soften the mood.

The days and the weeks roll by and then another month has pass.  We wonder, how long can this last? What lies ahead for Mummy? My sisters and I would love to know, but the path will only be revealed as it is traveled.  It is a long journey, but we do what we can to make the best of it — for Mummy and for us.

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1 Vicki Brown March 22, 2013 at 9:44 am

Thank you for sharing. I care for my husband who was diagnosed 5 years ago with Alzheimer’s at age 62. I gave up writing a journal, because I did not have the heart to record my days. This disease is heart-breaking. We have 6 adult children, all with busy families of their own; it’s difficult to ask them for help. Their hearts are always wanting to be helpful, but reality is their lives do not include the extra time or effort needed. I live in a small town where there are not many resources, so I am left on my own. I often grieve for the conversations we used to have and the things we used to dream about. Sigh.

2 Susan March 19, 2013 at 11:25 pm

I am crying. You and Barb are so wonderful to care for her.

3 Mike Donohue March 16, 2013 at 7:35 pm

Hi Nancy, this comment is not on the preceding post. It is on the recent comment carried Alzheimer’s Reading Room entitled The Story Behind the Alzheimer’s Numbers. This was an excellent comment, one I expect will produce comment and thought. It is on a topic I have been writing about for some years on my Blog: “Dementia Endured”. it’s WebAddress is im-mike.blogspot.com/ In my last post I have cited both your post and carried it in my Archive at “MY ALZHEIMER’S ARCHIVE OF ARTICLES AND MEMORANDA” with a WebAddress of: http://ic-mike.blogspot.com/

Because we are on the same soapbox I invite you to take a look at my praise of your work. Nice work!

4 Nancy Wurtzel March 16, 2013 at 8:35 pm

Mike, that is wonderful…I’ll check you out online! Thank you for featuring my work. Best, Nancy

5 Kim Stender March 14, 2013 at 11:01 am

Nancy- This is the first time I’ve read your blog, and absolutely love it. I own an in home care and assistance company for the elderly and disabled adults. Mt passion has become dementia/Alzheimers. I am one of only 2 people in Minnesota who is certified to present ” The Virtual Dementia Tour.” This is an interactive, hands on activity that gives people a real chance to “walk in their shoes” for a few minutes and get an idea of what it is like to suffer from this disease. I would be honored to present it to you, your followers, or anyone else that may be interested. I have presented for staff at ALF, community members, support groups and others. Please let me know if you have any interest. I also do an activity called TimeSlips, which is designed for individuals in mid to late stage alzheimers. This activity really encourages participation and I’ve have had individuals who haven’t spoken for amost a year or more contribute! I am always looking for places to share these activities.

6 Nancy Wurtzel March 13, 2013 at 11:09 am

Dianne, Thank you for coming to read and for your encouraging words about my blog! I really, really appreciate it. It is hard to be a caregiver of your parents, especially when it goes on and on. I’m feeling for your dad, as well. The older caregivers have an especially rough road to travel…you are a good daughter to keep showing up. Best, Nancy

7 Dianne Purdie March 12, 2013 at 11:53 am

Hi Nancy
I’m going through the same thing with my mother now and very much appreciate hearing your story. I live almost 2 hours away from my parents and I visit once a week. We now watch old home movies on each visit and it is so heart warming to see my mother remember things and come out with complete sentences and actually keep her eyes open for 2 hours! Her long term memory is still very good so I love taking her back there. Her short term memory is almost gone, she can’t say what she had for lunch. She was just in the hospital because of her heart and will now be in a nursing home for a few weeks of rehab so we won’t be able to watch the videos while she is there. I’m living in a time warp, not wanting to wish her life to end but not wanting the Alzheimer’s to progress further either. I think her heart will get her before full blown Alzheimer’s does. I think that will be the best for everybody, especially my 90 year old father who is caring for her. Meanwhile I’m existing in a time warp and just taking it one day at a time. In the hospital we made very good eye contact and held it for a long time. I was mentally sending her love and I think she got it.

Keep on telling your story, it helps me and I’m sure quite a few others.

Warmly
Dianne

8 Joanne Leonardis March 12, 2013 at 11:29 am

Hi Nancy, Thank you for the update on your mom. I think it’s wonderful that you still try to engage her by doing things she enjoys. I’m pretty sure my mom doesn’t know me either, just that I’m “somebody.” You know? “How long can this last” IS the big question. People don’t talk too much about it, but I for one am hoping my mom goes quickly. With an Alzheimer’s diagnosis, there’s no point in hoping for a long life — because in the end, the real life is gone. Sending warm thoughts your way. : )

9 Nancy Wurtzel March 13, 2013 at 11:07 am

You are absolutely right: Real life is gone. Thanks for reading, Joanne, and hope to see you in April!

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