A clear blue day

In reviewing my blog I realized I hadn’t written an update about mom since I posted about calling Hospice in September. They have been extremely helpful, our nurse visits weekly, a volunteer spends one hour a week with mom while I have a client teleconference to facilitate. They’ve supplied a new wheelchair and handicapped parking permit which have given us the freedom to go out if she’s up to it and the weather cooperates.

That one month that mom was without memory medicine was the most difficult time of my life. She was paranoid, hallucinating, delusional, emotionally unbalanced, and said and did ugly things that my mom would be mortified to know she said and did. I knew I could not continue to take care of her in that state it was too difficult and it wasn’t safe for any of us. I have promised to do my best to keep her at home with us but there have been days when all I want is my life back. Reality 101.

The Hospice neurologist recommended we try Namenda which comes in a titration pack and gradually increases the dosage over four weeks. By the time we got to the end of the pack she was on 10 mg twice a day and she was like a new person—it truly was amazing.  The fear and anger dissipated she was clearer and able to participate in conversation and activities; think Dr. Jekyll and Mr. Hyde.  She was back to her sweet mostly happy self. She was appreciative, laughed again, and was able to understand the importance of being positive and doing the best we could with what we had. For two months we have sailed along on the winds of her wonderful new helper two mornings a week and spending two half days at elder care with her breezing through her days. Life has been blessed.

Last month her Parkinson symptoms become more pronounced and her balance and speech have suffered. She had one fall in her room, just a scrape but it shook her up, she’s dependent on the walker and we have to use the wheelchair in stores or crowds. She’s having huge difficulty following directions and has no concept of her safety at all; unless she’s sitting and settled in her recliner with an audio book or favorite DVD (Louise Hay or Mike Dooley) its difficult to leave her alone. I’m usually able to complete my client work during the times a helper is with her or she is at elder care but working sporadically is a huge challenge. My clients are amazingly supportive and understanding of my situation. Again I am blessed.

Now and then I lose my patience when she’s drowning in negativity and I often forget to be empathetic when she can’t communicate what she wants and expects me to just know. (sigh) And then I remember a clear blue sun warmed day this fall when I was pushing her in her wheelchair on the paved paths at the park and said, “Mom I’m thinking about writing a book about dementia and what this journey has been like for us. Do you want to help me write a book?” Her face lit up and her voice was infused with enthusiasm, “Oh yes that would be wonderful.” She sounded like my mom for a minute—no mask no monotone.

Interested I asked her, “Mom what would you want to tell other moms and daughters like us?”  Without hesitation she replied, “Oh they need to understand how confusing and mixed up it is. You just don’t know what’s what. I think it would help them to know it’s not them it’s the dementia.”  I had no idea she was capable of this kind of insight. I see and hear glimpses of the person she used to be and I have faith she’s in there and sometimes that just makes it harder but this time it made me smile.

If our journey and experience could help ease the way for other families until they find a cure for this disease I would be delighted to share. Who knows what that may look like in the future? In the meantime here are a few tips and tricks that have made communication and safety win-win for all of us at home. I hope you’ll share with any phenomenal caregivers in your lives.

A Grayco baby monitor lets me hear mom if she calls for me at night.

I'm a light sleeper so I can also hear her if she gets up in the night.

This remote controled light switch attaches to any lamp's plug and the switch can be moved to table and back to wall holder as needed.

Another remote light switch sits by mom's recliner so that she can signal me even with the door closed (previously we used a pot and wooden spoon!).

She flips the switch in her room and this light comes on in the living room…nifty, eh?

To help mom remember who's who I took photos of her with each helper and put their name below.

A well used chalk board on mom's bedroom door helps us list our daily visitors and agenda.

We both kept tripping over the corner of the footboard of the bed, so I attatched a scarf from post to ceiling to make us walk around it.

Attached with a rubber band at the bottom and a hook in ceiling so I can take it down at night.

It adds color as well and is quite a conversation piece for visitors. :::smile:::