Joy, Love, Memories, Videos

what it looks like when an angel loves you

Our angel Gabrielle Vallée McKenna almost made it to her one hundredth birthday. She wasn’t quite sure of her exact birth date, she knew the year and the month (February 1916), but her recollection of the day varied between the 21st and the 29th. I know the date she died though: August 20, 2014. Her goal was to reach 100; she didn’t quite make it. Mom joined Gaby on August 17, 2016. I hope the two BFFs are raising Cain wherever they are.

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On May 10, 2014, Mom was too sick and/or sedated with antipsychotics to do anything more than listen to Eric’s beautiful piano playing. She couldn’t sing, play or clap as was her wont. There were no Beatles tunes.  No Ain’t She Sweet?, no She’ll Be Coming Round the Mountain, no Doe a Deer either.

All Mom could do was sit in the chair with her eyes closed and let the melodies soothe her. About 15 minutes into the session, as Eric played What a Wonderful World, Mom’s BFF Gaby came in to the drawing room to spend some time with us. That was a bit out of the ordinary as Gaby slept most afternoons. As she walked past Patti, Gaby spontaneously bent down to kiss Mom’s cheek. I was lucky to capture the precious moment with my iPhone.

https://myalzheimersstory.com/2015/08/20/our-angel-gaby-is-raising-cain/

https://myalzheimersstory.com/2013/08/29/loving-words-at-sunset/

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Care Partnering, Music, Resources, Tips, tools & skills

101 activities you can enjoy with a person living with alzheimers dementia

060808-georgeville-flower-win just flowers

If you’re at a loss for things to do with someone who has Alzheimer’s disease or another form of dementia, you needn’t be. The possibilities are endless. Almost ANYTHING can lead to engaging life when you are present in the moment. Open your eyes and your heart to really being in a space and doing activities that bring you both pleasure.

A person with Alzheimer’s disease can take you back to old places and fond memories as well as to new places you never dreamed existed. All you have to do is open the door to their world and step through the threshold together. Remember to be curious and childlike. Rediscover how exciting exploration can be. See magic and possibility instead of tragedy and limitations. I have enjoyed doing a whole slew of activities with people with dementia at all “stages” of the disease.

Here are five things you can do when your loved one is still at home, and five others that may be more appropriate when he or she is in a care facility; anyone else can do them too (a PDF of 91 more is at the bottom of the post):

1) Arrange Flowers

In summer, we picked wildflowers together and used many of the beautiful vessels and vases at our disposal  to create stunning arrangements. In winter, I bought a couple of bouquets at the local grocery store on Mondays when they were on sale and re-arranged them several times through the week.

2) Solve Puzzles

I bought a BIG-piece puzzle of Canada and set it up on the dining room table which we rarely used for eating. The puzzle sat there at the ready whenever we felt like working on it. This was a great activity we did over and over again for about eight months until it became more frustrating than enjoyable.

3) Walk

The need for exercise never ends, especially for people who are active and sporty. People with dementia don’t lose the ability to walk until late in the disease so we walked every day come rain, snow or shine.

The benefits of exercise for human beings and animals of any age are well documented. Exercise burns calories and excess energy and has a calming effect. It helps sleep patterns and improves attitude. There’s no downside.

4) Bake/Build

Making and giving away baked goods is something many women enjoy doing – whether they are young or old and whether they have dementia or not. As the diseases progresses people with dementia may need more help, but they still take great pleasure in the process as well as the results.

I find it helpful to get out and measure all the ingredients before we start to mix things together. Putting each ingredient away after it’s added is a good way of tracking what has been done.

Men may be more accustomed to woodworking, “fixing,” or doing DIY chores around the house. Use the same “baking” principles to help them feel useful.

5) Fold

At a certain point in the progression of the disease many people with dementia take to folding whatever is at hand – napkins, tissues, dishtowels, papers, newspapers, etc. Folding often had a calming effect on my uncle for example even though he often did it it in a somewhat compulsive way. You may find yourself supervising the folding of lots of laundry!

When you visit your loved one in a care facility, there are still many activities to enjoy together.

6) Sing

Singing can be done anywhere, anytime and is such an uplifting activity. I learned many old favourites and have spent hundreds of hours enjoying informal singsongs with people who have dementia. We burst into song whenever the mood strikes us.

7) Play music

With the help of a healing music coach PWD may “learn” how to play the piano and other musical instruments. They often enjoy keeping the beat with percussion instruments as well as their hands and feet.

I have sung literally thousands of songs during hundreds of hours of healing music sessions the joy of which I sometimes find hard to put into words. I’m so grateful for what I learned as a result of these musical miracles.

8) Count

One person living with dementia surprised and delighted me by counting the chimes when her old antique clock struck the hour. It inspired me to string some colourful wooden beads on a shoelace. She spent lots of happy hours counting the beads as she moved them back and forth along the string while I encouraged her.

9) Walk some more

I encourage you to walk with your PWD every day and to encourage them to exercise in whatever way they can. While the ground  you cover may be a tiny fraction of what you had been used to, it’s even more important to a person’s overall health to stand up and move around was the disease progresses. Help your loved one achieve her or his goal to keep going as long as she or he can.

10) Socialize

Socializing and being included in conversations is a great blessing to people with dementia.

Your choice of activity should accommodate the capacities of those involved, the mood of the moment, personal preferences, physical considerations, the environment, available resources, etc.

The important thing is to do something that stimulates, engages and is fun for the person with dementia as well as the care partner who doesn’t have dementia.

Here’s a PDF of 101 “starter ideas” I recreated from an Alzheimer’s Association post: 101 Activities Dementia Care Partners Can do Together

Of those listed, I have done at least half. I’ve also done some not on the list, which I intend to share in the future. Stay tuned! Another great idea is to plan weekly outings to a local club or activity center purpose-built for seniors. Find tips about that here.

https://myalzheimersstory.com/2014/06/16/5-things-i-never-knew-until-i-sang-with-my-alzheimers-mom/

https://myalzheimersstory.com/2016/09/06/5-good-things-alzheimers-brought-more-of-into-my-life/

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Care Partnering, Challenges & Solutions, Hope, Life & Living

the main thing is to keep going

the-main-thing-is-to-keep-going-2

August 25, 2014: It’s raining cats and dogs and I’m worried.

I’ve just picked up Mom to bring her to my place for our weekly healing music session with Eric, and I don’t know how I’m going to get her into my house. We normally use the temporary ramp I set up over the front steps so I could wheel her into the house when she was unable to walk after being so sick in April and May. Thankfully, we’ve used the ramp differently than I had anticipated when I put it in place. I’ve only had to wheel her up it a couple of times, her ability to shuffle/walk having mostly returned after she knocked on death’s door in the spring and death didn’t answer.

IMG_7932Mom quickly learned confidently to walk with my assistance up and down the slightly-more-than-wheelchair-wide piece of plywood. Some say Alzheimer’s people can’t learn new stuff; I know from personal experience that’s not true. Even though we use it for walking not wheeling, I’m glad it’s there – it’s safer and easier for Mom than navigating the few flagstone steps to the front door. Mom’s BFF Gaby even “ran” down it during her last visit. And when I say last, I really mean it. I miss my/our angel Gabrielle 😦

Anyway, like I said, it’s pouring – POURING! – rain. Even if I park on the lawn beside the ramp we’ll both be drenched within seconds and the ramp will be soaked and slippery. I could bring Mom back to The Home, contact Eric and ask him to meet us there and play piano in the drawing room rather than guitar at my place. Or, Mom and I could try an alternate route: I could drive into the attached garage where we would be sheltered from the rain. BUT, and it’s a major BUT, there are two relatively high steps to get from the garage into the house.

I haven’t taken Mom up or down any stairs since February or March when we regularly used the inside staircase in The Home. That was before she was sick. Lately she’s spent most of her time in a wheelchair. I really don’t know if she can manage the steps. I do a quick risk/benefit analysis and think about what Mom would want. I resurrect our Alzheimer’s café conversation of a few weeks ago:

I choose the riskier route for the both of us, knowing I have a safer back-up if all else fails. We make it up the two steps and into the house with relative ease. The thing is with life, Alzheimer’s or not, the main thing is to keep going.

Thank you Mom, for being so brave. You inspire me every day.

August 25, 2014

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Advocacy, Life & Living, Love, Music, Videos

not a willy or a sam but amazing grace

Don’t be fooled into thinking my mom’s expressionless face in this video is the result of dementia. It’s not.

It’s one of the side effects of the antipsychotics she was inappropriately prescribed. Despite being sedated into a zombie-like state for convenience and cost savings for four years, my mom demonstrated day after day that it would take more than drugs to kill her spirit.

She had amazing grace.

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Joy, Music, Videos

can you play an alzheimers doe, dear?

hands-on-the-piano

Social workers and doctors saId my Mom Pinkie Patti (who was in the later stages of Alzheimer’s disease when this video was taken) shouldn’t have healing music therapy because it could potentially make her agitated and she wouldn’t remember the joy and pleasure of it anyway. As you can see, the experts were wrong.

Believe your own truth.

The touching blog post that goes with this video is here.