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I Have Alzheimer’s or Another Dementia
Dementia - A Sacred Journey ?
Hello, I am the wife of a wonderful man with dementia. My hope is that this thread will be used to post positive experiences, insights gained, miracles observed while traveling this journey. Here is a little essay I wrote a while back when I first noticed changes in my husband:
Dementia - A Sacred Journey ?
"For everything that has been taken, something has been given." Michael Fox
It seems to be an unlikely correlation--dementia and sacred journey. But it has been my experience also that for everything that is taken, something is given in return. At first glance there seems to be nothing but losses. All the abilities acquired over a lifetime are lost gradually, one after another. What is given in return?
In 2008 TED talks presented Jill Bolte Taylor, a neuroatanomist, who gave a 20 minute lecture "My Powerful Stroke Of Insight". The morning of her stroke, she lost her ability to speak, understand speech or numbers, was partially paralyzed and drifted in and out of consciousness. The brain chatter of the left brain stopped completely, and she found herself in a quiet, peaceful, perfect state of being, unable to remember anything of the past, nor did she have any perception of the future. She experienced herself as a perfect, beautiful being, connected to all of humanity and part of the universe.
This is the link to her TED Talk
She also wrote a book about her experiences, "My Stroke Of Insight", where she goes into greater detail about "finding Nirvana". I remember one incident that Dr. Jill describes in her book. She is sitting on the sofa at her mother's home, drooling, unable to feed herself, partially paralyzed, unable to communicate, incontinent--and smiling. Her mother wonders how she could be happy when she was in such a debilitated state. Her daughter experienced herself as healthy and whole, peaceful and one with all of creation.
Fern Stewart Welch recounts in her book "The Heart Knows The Way" her husband's journey into dementia and finally death and her desperate search for meaning and answers regarding this disease process. During those years she was shown that, as her husband was detaching more and more from this reality, he was spending more and more time in the next world. Or, as he was dying to life on this side, he was born into the next, Together they traveled a sacred journey, both learning much as they went along.
And finally, the author Marsha Sinclair in her book "Don't Call Me Old--I'm Just Awakening" interviews caregivers in different countries and asks them about their perception of the elderly. She was told by Japanese caregivers, that they
that they consider old age dementia a sacred state. When the person has learned enough from this world, he will "vacate" his body and move into a holy space--one without memory or obligation. The caregivers felt it was their privilege to serve these individuals and protect them from abuse.
And also our own, dear Sea Field posted a lovely poem under "Untitled" on the spouse caregiver forum that talks so beautifully about the life of her dear husband straddling both worlds.
Thank you Miriam. I very much enjoy your postings. Someone on this forum--I think her name is TruthfulKindness--recommended the book "Deeper Into The Soul", which I just finished reading. What a gem it is! In the introduction are a few sentences, which sum up its philosophy:
"In this book we highlight a basic attitudinal shift: Dementia is our teacher. Rather than simply a disease, dementia has purpose and meaning. Rather than being people simply in need of our care, people who forget can teach us about life and living."
We are still in the early stages, but dementia brought us even closer than before. We treasure our time together, and I feel honored to accompany DH on this journey.
Many blessings on your sacred journey. Sending you much love. In the stillness of meditation we are shown the way.
I have a favorite mystery writer with 30 titles in her series. I enjoy rereading. The characters are mostly the same, but the stories are different. It's very comforting for me.
It is so very nice to meet a person, who also is looking beyond so called limitations and is open to the hidden treasures.
"I see that your challenge is a gift that you treasure"--so beautifully put! Yes, that is exactly how I feel.
This book is an easy read. It is very short (less than 100 pages), set up cartoon style with people talking in bubbles. I highlight all the wonderful insights, so I can look at them at any time.
Sometimes old and new paradigm thinking are side by side. For example:
Old thinking: Forgetting is wrong.
New thinking: Forgetting about this world helps put us in touch with our essential feelings, with our spiritual core. (I highlighted this, so I can find it again when I need it)
For me, the Buddhist teaching is very helpful, such as: We create our own suffering. If we learn to love what is, there is no suffering.
Blessings to you, dear friend.
In case anyone is interested in aroma therapy, a wise friend of mine has given me the following recommendations:
a diffuser for distribution of the essential oils into the air. This is the link for diffusers and essential oils
She recommended these essential oils for DH and me:
Lavender for calming
Bergamot for anxiety/depression
Sweet Orange for joy and uplifting
Peppermint for clear mind/headaches
Jatamansi for sleep problems.
Just wanted to add that Jatamari is too thick for a diffuser. Rubbing a few drops of the oil into your hands and feet gives you the desired benefit. My wise friend is an herbalist and massage therapist.
Forget-me-not, I've been using aroma therapy for several years and believe it is one of the reasons I remain in the early stage. If you get a chance, go to the Clinical Trial Board. There you will find a great deal of information about the benefits of aroma therapy for those of us with dementia. Lane and others have done an enormous amount of research on the science behind aroma therapy and which aromas can assist in forestalling the progression of dementia. At least that has been my experience.
You may already know this, but the other practices that help forestall the progression are:
Eating a Mediterranean Diet
Staying socially active
Taking meds as directed
Maybe you have some best practices?
I am very excited about giving aroma therapy a try. Actually ordered two diffusers, one for the living area and the other for the bedroom. Thanks for the info regarding Lane's research of aroma therapy.
I wished I had some best practices for myself. I have meditated daily for many, many years and it has been so helpful to keep me centered. But since I am living and breathing Alzheimer right now, I have not been able to relax enough to meditate. I hope once I have taken care of everything (DPOA etc are the next things on my to-do list) I will be able to resume my practice.
The other day, DH, while in a dream like state, had a wonderful revelation.
He told me that it was all about him and me, our relationship. He brought forth in thought, that he was very angry with me, that I was too controlling, always looking over his shoulder, etc. Every time he had that thought, a bright entity, which he called an angel, descended from the clouds, telling him that I was just trying to keep him safe, that I loved him very much, and I only had his best interest at heart. This happened about four times. Every time he presented a complaint about me, this angel descended again and told him again that it was for his own good, to keep him safe, etc.
When it ended, all his anger was gone and he was filled with love for me. He told me how much he loved me, how much he appreciated what I did for him, that he was so thankful for me.
I was so touched and decided we needed to honor this wonderful experience somehow. I planted one of those miniature gardens in a small planter, with a few succulents and cacti (his favorite plants), a little bench underneath an arbor, a birdbath, little rabbit peeking out from under a succulent, a birdhouse, and a little fairy to represent the angel. This little garden is sitting on top of a small table on the deck, where he can see it when he is smoking his pipe.
What a wonderful and beautiful post. It made me wish I lived near you and that we were friends.
I'm part of a group of about 20 that socializes at least once a week. Many are married couples, but others are family members and volunteers that assist the persons with dementia. There are a couple of us who go solo.
Every Monday, we meet for our Zoo Walk (a guided tour each week in different areas of the zoo...We know each and every animal in the zoo by name, and sometimes I think they say to each other "Oh, God. Here they come again."). Afterwards, we sit in the Zoo Cafe and talk of many things. The Zoo Walk is sponsored by the Parks Department.
Once a month, one of the spouses of our group puts together a 4 to 5 mile walk in and around different Seattle neighborhoods, then ending the walk at a cafe for coffee and goodies.
The Frye Art Museum in Seattle sponsors a gallery tour for us, too. Once a month, a curator takes us to view 2 or 3 pieces of art and we muse over the meaning or intent of the artist. Occasionally, they offer us a series of art classes led by a very good artist and that is great fun, though sometimes it's a little disconcerting when we share the work we've done, but the artist and the curator go a long way to be very supportive of each of us.
A few months ago, with the coordination of Seattle Parks and Recreation, about 40 of us got together and we held a talent show. It was so much fun! We have already begun planning for our second annual talent show.
Then there are the Alzheimer's Cafes in different neighborhoods and support groups. Sometimes I feel overworked
Wow, I got off on a tangent!
What a lovely thread!
I love how my husband's heart has gentled over the last few years. When he sees the neighborhood children playing he is mesmerized. He watches with tears in his eyes, commenting on how cute they are. They all recognize him and wave and call out to him. This puts a huge smile on his face.
Years ago he would have been too busy to notice, too concerned with the worries of the day to appreciate them. But not now. Now it's a highlight for him to hear their voices, watch them run and skid around on their big wheels.
His cognitive abilities are slipping away. But his heart's wisdom is opening by leaps and bounds.
how wonderful to have so many experiences on a regular basis--the zoo, the art museum, creating your own art work, the talent show, hikes through neighborhoods, and so many friends! What a blessing! Seattle must be a great place to live, it offers so much to enhance the quality of life of its citizens. I am so happy for you! I would love to know what talent you presented.
" His cognitive abilities are slipping away. But his heart's wisdom is opening by leaps and bounds". What a beautiful observation! I love to see the innocence, taking in the joys of the moment. Thank you for your post.
I try to apply the principles of Maslow's Hierarchy of Needs and see my role to provide a calm, serene environment, manage his symptoms to the best of my ability, satisfy his physical needs, shower him with love and acceptance, so he can devote his time and energy to resolving issues from his past and prepare himself for his transition--taking care of his lower needs, so he can work on his higher needs. Hope this makes sense.
Both my husband (who does 100% of care for me) and I had a few days where all the angst and friction died, and I felt and saw he was caring for me in his way as best he could. I realized I needed to relax, and could relax. And we did.
I also felt a presence, a consciousness speaking to me that I did not have to fear any more.
I still do consider worst case scenarios but the tension is gone, 90% gone.
Thank you for this post, very helpful.A place of peace.
love and courage
This post from Sea Field has stayed with me:
"I love how my husband's heart has gentled over the last few years."
I have noticed the same thing.
After moving into our mobile home and having settling in, DH said one day that he wished someone would bless our house.
Last week we had a lovely little house blessing ceremony, first standing in front of the house, then moving from room to room, with DH carrying a lit candle, and our children and their spouses reading verses of scripture. It was so touching. A dear friend, who is a pastor, and his wife, were instrumental in organizing it. I plan to have the printed blessing framed and hung next to the entrance door.
Afterwards we all went for dinner to our favorite outdoor restaurant, sat at a long table and got caught up with everyone's life. After paying and getting ready to leave, DH went inside to thank the wait staff for the excellent service they had provided.
It would have never occurred to me to do these things--the house blessing and the personal thank you. DH was the one who thought of it. And what lovely memories we all have now.
My thoughts as a Christian, Jesus said even if I give a cup of cold water to a child, I am doing it for Him. This kept me going as I ministered to my own children, my day care sweeties, and the troubled teens in my foster care. I purposed to give my love sacrificially. And it was hard and I fell flat many times, but I was so blessed. Every one of those kids taught me something valuable, mostly about love. I see this journey the same way. I see with spiritual eyes, Jesus in all His distressing disguises in my loved ones with dimensia. I am learning so very much about what is really important in this life.
To slow down, to speak softly, to touch often, to whisper love, to look deeply into your beloveds' eyes for the answers,to reassure, to give in, to sing, to paint, to laugh, to pray without ceasing, to sit quietly, just being close. I am seeing the negatives in my life that need work! I can be impatient, quick tongued, selfish, angry and lazy, busy, fearful. What an opportunity for growth! I truly believe that it is the most humbling, beautiful privilege to be able to help my loved ones on their long journey toward God. They are closer to God than I, making them the teachers. And I am listening.
A song I love: You are the potter, I am the clay. Mold me and make me, after Thy way. So as my young ones say, it's all good. We are walking down a path together, some of it is soft and pleasant, some is rocky and full of thorns with a cold driving rain. But we are huddled together and we are going to finish as one family. Some sad day, the y in the road will take my loved one up the mountain with out me. And I must keep walking until my y in the road. Then we will meet on the mountain top. And understand it all, with joy.