Awareness Month 2016
At End of Life, Just BE
BE with them
Please note the following post deals with an emotional topic. Please call our InfoLine if you would like support or information.
Death and grieving are topics that are not spoken about readily; but they are part of the human life experience. It is a topic that many shy away from, but if you are caring for a person with dementia you have been experiencing grief and loss during various parts of this journey.
Dementia is a progressive and fatal disease. Discussions need to take place to ensure that all who surround the person with dementia understand that at the end of life it is most important that your person is comfortable and that they are dying with dignity.
For this last blog post (we have been profiling the stages of the disease all month and you can find posts about the early, mid and late stages below) I spoke with two staff at the Alzheimer Society of Nova Scotia about the end of life stage. You will read below what they told me. Please remember, every person is different; what you may want for them at the end of their life may be different from what they want. If you can (and having these conversations are tough) speak with them about their wishes in the early stage of the disease and have them write it out. Respect them by honouring what they chose for their end of life.
Linda Bird, Director, Programs and Services
Good days are gifts. Try to BE IN THE MOMENT when they happen.
Spend less time thinking, “I could have done more. Why didn’t I do more?” Acknowledge that dementia is a disease that has no cure or treatment. Appreciate that as partners in care, we have busy lives and multiple responsibilities. We are balancing family, friends, and work. Recognize all that you have done.
Give yourself a break and appreciate the good moments.
Wenda MacDonald, Manager, Client Services
It’s natural to feel sad and be grieving. But at the end of life, your person most likely, still wants you to BE WITH THEM. A person with dementia’s cognition is decreased, and they may not know who you are, but they very likely sense you are in there with them, caring about them. At the end stage of dementia we still feel emotions.
Conversations between you may no longer happen, but there are still ways to communicate:
1. Hand Massage. Touch is important to all of us. A gentle massage while you are visiting may be comforting.
2. Music. You can play their favorite music. You can pick a few favorite songs and make a playlist for when you visit.
3. Tell stories. In a soothing voice, you can tell your person a story, read to them, or tell them about your day.
Being with them doesn’t mean you are there 24/7. You may only be able to stop in for half an hour but when you are there the most important thing is to be fully with your person, engaging when you are able in the moments you are there.
Both Linda and Wenda want you to know that grieving is a natural part of the process and that there are supports available to you here. You can also call the Alzheimer Society’s confidential telephone service at 1-800-611-6345 or speak with your doctor. If your workplace has one, call your Employee Assistance Program, this is also an excellent resource.
Loving & Supporting in Later Stage
By Deanna Harvey-Green
At the time mom was diagnosed with Alzheimer’s disease, I was 26 and she was 64. It didn’t seem right, it didn’t seem fair. She had just retired a few years previous and was suppose to spend the rest of her days enjoying what she worked so hard for all those years.
My mother and I had a relationship like no other; we were truly best friends. There wasn’t anything I couldn’t tell her and she always had my back no matter what. So when this news hit I felt like I was living in a bad dream; it took a while to process and knowing that I couldn’t fix it was the hardest hurdle to overcome. I couldn’t fix it no, but I could do whatever necessary to help her live well with this disease.
It can be scary. Sometimes it seems easier to pack it away in a neat little box and pretend like nothing has changed; but the truth is things will be forever changing and we need to learn to adapt. We can spend forever dwelling on the negative but the truth is we need to live in the now; we need to adapt and make our loved ones happy and safe for as long as possible.
Learning different approaches will make your life easier, it did for me. When you take something away, replace it with something to fill the void; do activities together that you once use to do but maybe do them in steps. Like when we use to go shopping, which we did almost every Saturday, instead of taking eight outfits in the dressing room at once I learned to only take one outfit in at a time and hang the rest outside on the door. It made for a much easier and less stressful time for both of us.
I would do something similar when we would bake as well. I would take out all the ingredients and once she used one I would put it back in the cupboard so that way we would know it was used already in the recipe.
Things didn’t always run smoothly but these little things helped in big ways. Mom loved to knit dishcloths; she would sit in the chair and knit for hours on end. Sometimes she would spend more time untangling the yarn then knitting but she was happy and that’s what mattered. As her disease progressed I noticed she was having trouble starting and ending a dishcloth, she would get frustrated with it. It pained me to see this so I decided I was going to teach myself to knit. I took to Google and did the best I could. I learned enough to know how to cast on and cast off so that I would start a dishcloth for her so she could pick it up and keep going with it. When it was time to end one, I would finish it off and give her another I already started. I learned a lot about myself during mom’s journey with Alzheimer’s disease and our already close bond grew even closer through those years.
Watching mom go from being totally independent and outgoing to extremely passive and quiet was hard, but what I had to learn was that she was happy and I had to adjust to that. A lot of times our visits would just be her and I sitting down in her favorite chair while she would knit, sometimes hours would pass without a word but I knew she was content. I didn’t force conversation out of her because I knew that she would get flustered if put under pressure, it happened a lot when we were in bigger crowds. She was most comfortable in smaller groups or just with my father and I. When I would take her shopping or to run errands I would always slow my walk down and hold her hand; she loved holding my hand because I believe it made her feel safe and it made me feel good that I could keep her safe. She absolutely loved my dog Jesse and he loved her just as much. They had a bond that no one could explain, so anytime I would go to visit I would bring Jesse along. If she was having a bad day a visit from Jesse could bring back her smile.
The best piece of advice I could give someone who asked me what can they do to help someone they care for, would be to slow down, stop and smell the roses if you will. Once we learn to slow down then we start to become more aware of the things that a person with dementia can and cannot do, which will make for less stress on you and them. There will be lots of times that will be hard and frustrating, but every day there also will be something to smile about.
If you or someone you know are looking for resources to help provide care for someone living with dementia you can find some here or call the Alzheimer Society of Nova Scotia 1-800-611-6345.
When dementia becomes the third player in your marriage
*Names have been changed at the request of those interviewed
In Canada, 70 per cent of those who support/care for someone living with dementia, are women. That woman may be a daughter or a sister. And of course, a spouse.
How do you balance two roles in a marriage when a dementia diagnosis happens? Is it possible to straddle the line between wife and partner in care?
For one spouse in Halifax, some days it's a struggle. Nancy* who has previously lived the dementia journey as a caregiver to her father, didn't expect her marriage to also have dementia when she married Irwin almost 60 years ago.
Serendipity isn't the word that might come to mind when you think about Nancy and Irwin’s story, but that's where your misconceptions of the disease need to change.
They meet by chance; Irwin was in town to visit family and Nancy was their neighbour. One night, by accident they met. Irwin went back home after his visit, but they kept in touch via letters and calls. Two years later, they were married.
After Irwin's retirement, they moved back to Halifax, where Nancy became a caregiver to her father. She learned a lot about the disease, but all that she learned with her father, would not and could not, prepare her for when Irwin was diagnosed.
"After Irwin's diagnosis, I was in shock, trying to come to terms that this was happening again. I was already a volunteer with the Alzheimer Society of Nova Scotia and I had cared for my parents, but I didn't know how I was going to cope with what was ahead for my husband and I."
For Nancy, several years into Irwin's diagnosis, she feels the pull between being a spouse and being a caregiver.
"This time living with the disease and all that it entails, is quite different from dealing with it with my parents. For so many years, you have shared intimately with your spouse, the joys, the challenges, the sweet moments, the losses and the growing together as, not two people, but as one. I am first of all his wife and that relationship continues.
Of course, watching your spouse as he struggles with his disease is heartbreaking, but seeing his daily courage, his determination to believe that his life is not over encourages me to try to be the best help that I can be to him.
Daily, I need to have patience, to respect his choices, to listen to him and always, to allow him his accomplishments, small though they may be, which for him gives his life value. It's not easy to do this, as much as asked to keep one's spouse safe each day."
Nancy says that although she had experience with the disease, she had to relearn how to deal with the same situations, through the lens of Irwin's spouse.
Nancy has some advice for other spouses facing the new member of their marriage - dementia. "Stay active with friends, family and other groups. Have a sense of humour; funny incidents happen with a spouse with Alzheimer's disease. So often you can both laugh together when say your spouse puts the ice cream away in the microwave instead of the freezer. Don't sweat the small stuff. Patience is important as is encouraging your spouse to be active."
For Nancy and Irwin continuing to have little adventures together is also important. "My husband loves having dinner in the dining room by candlelight. When the meal is finished, we sit and talk about the past and happy times, or he might open up about how he feels as he grows in his disease. These are sweet times."
And her last piece of advice for those in the same situation is a simple one: "My advice is to live each day as best as possible. Enjoy those good days and be there for the not so good days."
Download your copy of language guidelines for writing and reporting on people with dementia here.
Meet Janet and Jack
Both living well on their dementia journey
Janet and Jack’s story started decades ago right here in Nova Scotia. On a summer’s day in August, 1959, they got married in front of hundreds of guests in the beautiful and historic St. Paul's. The bride wore a dress made by her mother and the groom “clowned around,” says Janet, for the camera.
From this day on, they maintained the hobbies they had formed together during courtship: swimming, hiking and traveling.
Oh how they traveled. From Dartmouth they visited the Caribbean, Europe and lived in Asia. During this time they expanded their family times three and settled back in Nova Scotia, in the City of Lakes, Dartmouth.
They continued to raise a family and live their lives. Jack maintained his membership with the Rotary and became President of the YMCA Dartmouth. Janet became a volunteer with the Alzheimer Society of Nova Scotia.
And then in 2011, their story started a new chapter: Jack was diagnosed with Alzheimer’s disease, the most common form of dementia.
“We are very frank with people about Jack’s diagnosis,” says Janet. “We told friends right away and asked them, ‘for god’s sake, don’t drop us,’ because I had seen through my volunteer work, the isolation that comes with this disease.”
“We all have something, some condition. Arthritis, MS, like those, Alzheimer’s is a condition I live with, like any other,” says Jack. “People knowing helps build a support network but also makes the disease become more normal. And if you act normal, other people will too.”
Fifty-seven years after they said “I do,” Janet and Jack continue to live their lives the way it started: they swim every day at the local recreation center; they walk the trails around their community and they volunteer.
Every second week they volunteer at a local Nursing Home.
“We pick up kittens from Bide Awhile Animal Shelter and take them visiting with residents,” says Janet Rowe. “It’s a very popular program. Every time we visit it is about more than cats, it’s a social visit.”
Their life didn’t end when Jack was diagnosed with Alzheimer’s, it continues.
At the wedding reception of his daughter, Jack offered this advice: More important than looking into each others eyes, is looking together in the same direction.
And together, Janet and Jack go forward.
We thank Janet and Jack for participating in our Awareness Month Campaign. Please view their poster here, print it and post it at your work/library/recreation center.