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Are You on a Dementia Journey with a Loved One?

Do you care for a family member who lives with dementia? Do you ever feel alone on your journey?

Karen Brown is a caregiver to her husband Wally who lives with Alzheimer's disease. In this video with Jennifer of Simple Local Life, she shares a powerful and moving story of the journey she's been on since her husband was diagnosed. She shares many helpful tips about the resources she's been able to use and the support system that she's put in place for both herself and Wally. And she imparts a message of hope and determination to be happy and to appreciate every day that she has. 

Jennifer: Welcome to Simple local life everyone. It’s Jen. I am here today at Earth Angels Home Care in Bridgewater and I am really pleased to introduce our special guest today. I want to introduce everyone to Karen Brown. Karen is going to share with us a little bit of the story of her journey as a caregiver for her husband Wally who has Alzheimer's. Karen was the keynote speaker at the Alzheimer's Awareness Breakfast they held here recently in Bridgewater and the feedback from that was just tremendous. We're really happy to have you here with us today.

Can you share a little bit about when you first heard that your husband had Alzheimer's?

Karen:  Yes. When he was diagnosed it was probably at least five years after we noticed changes happening to him that were very subtle. We knew things had changed because when you live with somebody for 50 years you know if there are changes in your lives. He was very aware of it too. We were without a doctor twice for a period of a year. That delayed us in getting a diagnosis, but we eventually got involved in the Nova Scotia Alzheimer's Society. They were able to make a referral to a geriatrician on our behalf and that was a great blessing for us. The ball started to roll very quickly once they were involved and we had a series of MRI scans, CT scans, blood tests and anything that might mimic Alzheimer's. We went through all of that and then not long after we were called into our geriatrician and she told us what she had discovered. It was an awful feeling. It blew me out of the water. Our daughter was with us because it's important that you have somebody to accompany you to all these appointments and tests. She was a wonderful resource to us. When I heard it, I had an idea of what was ahead of us. But in one way it was a relief because I was starting to doubt my own sanity. And I knew then I would have people beside me to help me.

Jennifer: You mentioned about making sure you have someone with you at your appointments because it's a lot of information to absorb and just someone else who's collecting that information and there to support you.

Karen: Yes. And often I found that I was given so much information, I would go home and forget things so when Lana was there, she wrote everything down and would send us notes. I'd say, “oh was that said?” It was very important that you have another set of ears.

Jennifer: That's very valuable information. You had a pretty substantial change at one point when it comes to your home and property that you owned.

Karen: Yes. We were living out in the country and had a 75-acre farm which we worked, and we raised sheep. We were there for thirty-seven years and we both had a full-time job besides. I knew we couldn't cope with it. It was just the workload. For the next year we sold our farm and sold our machinery and livestock and everything and that was a big change. I was very lucky because Wally accepted his diagnosis. I know some people are in denial, but he was not in denial so that made it easy for our children and me. He made the phone call to his siblings and there was disbelief because he was never sick in his life and he was physically and mentally active. We had no indication he was sick.

It's better to tell people in the beginning because you need their support. You cannot be a caregiver and do it alone.

Jennifer: So, you sold your home and your farm that you had lived and worked on for all those years. At that point, were you looking for some resources to assist you? Or were you just managing this on your own with your family?

Karen: From the time of the diagnosis we started going to forums and to caregivers’ seminars. There are so many wonderful things you can participate in. He was able to go to a day program three days a week which left me Monday, Wednesday, and Friday to do my own things. I would suggest coffee and conversation (a program of the Alzheimer Society of NS). I started going to support groups right away and that was very valuable because we were all caregivers and we were sharing in a very safe environment. We picked up tips during that time. We did eventually get a wonderful nurse practitioner and she is giving us the best care. She’s not worried a bit about Wally because he’s getting the best of care. But she is worried about me, so she keeps me on a short leash. And I can call her day or night. I'm not alone. I have lot of resources I could call on and I think that is something that people struggle with a lot.

Jennifer: Sometimes people can really isolate themselves so it's really great to hear you talk about taking advantage of these resources and supports that are here in the community.

Karen: Yes. And the other thing that I will mention is that a lot of friends said “Let me know. Just call when you need help.”. In October last year my daughter in law suggested that I call several couples and ask them if they would commit to coming over to visit with Wally or take him out for a drive. We have four sets of friends who I asked, and they do that. It gives them happiness to be able to help us. I just find psychologically it's been a wonderful thing to do. And I would encourage you to get others and bring them onboard too because they want to help you. And it might just be an hour but it's an hour.

Jennifer:  Karen I'm so glad you were able to speak at the breakfast because these are such important tips as someone who's going through the experience and living it. And you've obviously learned and seen what's been beneficial for you because as your nurse practitioner mentioned you know looking after yourself is just as important as looking after your loved one who's struggling with Alzheimer's or dementia. Is there anything else as far as making sure that you have some time for yourself?

Karen: Yes. I hired Earth Angels Home Care and they’re a private home care agency. They come into the house and I don't have to supervise and they're very proactive. And Wally loves them. I couldn't be happier with the service that they provide.

We continue with a lot of our regular activities and we go to church every Sunday. Maintaining that faith portion of our life is important and the church family is there to help us.

I just think about what I have instead of what I don't have because I think the attitude is so important. I can't dwell on the way our life used to be. We used to be away all winter. We can't do that anymore, but I don't want to sit home and feel sorry for myself. I want to get the most out of every day that I have with Wally and the thing is we don't know the future. Something else could take either of us and we don't know but I'm not going to waste any energy on being sad. I want to enjoy every day. We laugh a lot and we dance and Wally loves music. I've come to love the old classic country music. We’ll be dancing around the island to gospel music because anything that makes him happy makes me happy.

I've committed my life to doing this for as long as he needs me.

I will mention too that when we bought our condo we renovated it and put in things which will enable us to stay there. It’s good to do things sooner rather than later.

Jennifer:  So you can stay in your home and be comfortable?

Karen: Yes.

Jennifer: I could stay here all day and talk to Karen. I enjoyed this chat so much.

I think there's been so many valuable lessons in what you've shared with us around how you take care of Wally and the real love story you guys have within your marriage and your sentiments on how you're looking at this period of your life.

It's just really beautiful and touching.

You've obviously reached out to a lot of those in the community and the services here through Earth Angels Home Care to allow you to still stay in her home and be comfortable and to live out the rest of your life together.

Karen: Yes. And I just am so blessed that our children are so involved and of course they are heartbroken when they see something happen to their dad. And part of my job is reassuring them and answering phone calls to the children and the grandchildren. All we can tell them is how things are today. Today they're good.

Jennifer: What a wonderful message you have shared.

Karen: The nice thing is that people treat all of it normally. They’re not afraid. They know what it is today. He’s a very gentle person anyway and he loves having them around. It’s a gift to me when people treat us normally.

Just drop in for call and come and just say “how are you doing Wally?”

Don’t stay away because you don't understand the disease.

Jennifer: I can't thank you enough. I'm so glad that Earth Angels suggested that we have you on to share your story. If you have any questions for Karen or for Earth Angels Home Care about the services that they provide for families, please send them along and we'll be sure to get those answered. Thank you.

Again, this was just lovely, and it was so nice to meet you. I enjoyed this. I hope you guys have a wonderful rest of your day and I hope you get another dance.

Do you have a question or comment about the dementia journey that you're on? Please leave us a comment!

To learn more about dementia or to book a free, no obligation home care assessment, visit www.earthangelshomecare.ca or call 902-893-3553 in Truro or 902-530-6205 in Bridgewater, Nova Scotia.

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