Care ‘Giving’ for Dementia: Learning to ‘Receive’

There are times when being a care giver for someone with dementia–or any serious illness—is exhausting and unpredictable. When my husband, Dave, was initially diagnosed with Frontotemporal dementia, I searched everywhere for the magical book–10 Easy Ways to Live with Dementia. It not only didn’t exist, but there was little information on ‘how to’ deal with the many challenges that come up.

It has been 3 years since our lives have changed dramatically. It took 2 years for me to hit the ‘wall’—a place where I felt overwhelm and wasn’t sure how I was going to survive the rest of this journey. I had a choice to stay stuck in the sad, overwhelm state or move through the pain and up the ladder to more peace and loving what is. It didn’t happen overnight. I spent months with a life counselor, reading, listening and taking personal development courses, meditating, and soul searching for answers. As I continue on this path I am feeling how much easier it is to ‘flow’ with my new reality than ‘resist’ it. Every day I am shown how to do it by Dave who is ‘flowing’ with what is.

It seems that I am surrounded by messages on how to live a happier, peaceful life. Last week I was at CEOspace—one of the finest business schools in the world. It stresses the ‘cooperative’, rather than the ‘competitive’ model. Their core message is…”when you help someone get what they want, you will get what you want”. (that doesn’t necessarily mean from the person you helped) It reminded me of a story I wrote in a blog several months ago…

The story is about a gentleman who arrives at the ‘pearly’ gates of heaven. He meets God at the door and says…”before I come into heaven, I would like to see what hell looks like, so I can better appreciate heaven. God says…no problem. Let’s go. When the door to hell opens there is a table covered with wonderful, healthy food. Around the table sit skinny, hungry and cranky people bickering with each other—holding 7 foot chopsticks in their hands.

They close the door and head back up to heaven. When they open the door there is a similar table full of wonderful food. People are joking, laughing and having a great time and in their hands they are also holding 7 foot chopsticks.

The gentleman asks God, what’s the difference? Why are these people so happy and healthy? God answers…because they feed each other.”

I love this story because it is a perfect illustration of how well the ‘cooperative’ model works. There is a balance of giving and receiving. As care givers we tend to ‘give’ more than ‘receive’. This is the nature of our new job. But it doesn’t have to be. How good do you feel when you give someone a special gift or help someone out? Can you feel their appreciation and love for you? On the flip side…how do you feel when someone offers to help you? Maybe a family member offers to take your loved one for a drive or to stay with him so you can have a break to be by yourself, or go out with friends and laugh. Do you accept their offers or do you hesitate? If your furnace breaks down or your car won’t start, would you ask your neighbor to help you? And if you do, are you comfortable receiving help without feeling like you should do something in return? It is a ‘work-in-progress’ for me.

Asking for help and ‘receiving’ (as much as giving) is a new concept for me. I have always prided myself on being strong; I equated strength with independence—not needing anyone. No matter what, I would figure it out even if I dropped into bed exhausted at night. But last year I reached a ‘tipping’ point and I knew that I had to change my way of thinking. If I was going to stay healthy and be the best care giver for Dave, I had to throw away my ‘default’ attitude. With practice, it is getting easier to ask for help without feeling that I should ‘give’ something in return. I am amazed at how much easier life flows. The feeling of being 100% responsible for Dave’s care is no longer weighing me down. People feel good when they contribute to a cause bigger than themselves. And I am feeling good knowing that I am not alone. I would say this is a win-win.

Working through moments of sadness

This morning Dave had just left with the dogs for a walk and I was getting ready for a run. I was sitting in the den when I noticed how tired I was feeling. It was emotional fatigue from a week of household challenges—the furnace breaking down, the central vacuum not working and a whole electrical circuit out.

Since my husband, Dave, was diagnosed with Frontotemporal dementia 3 years ago, I have gradually taken over his chores; chores that came easily to his ‘male’ brain. I had no idea how much he did until I had to pick up his end. Well, I finally have to admit that I am reaching my tipping point. I am putting up my white flag and calling for help. I realize that if I want to keep a balance in my life—working, having personal & family time, and managing our house–I need some assistance. No longer do I think I can do this by myself. My ‘dream’ plan is to hire a retired couple–4 hours/ day for 2 days a week. The husband can take care of the mechanical issues around the house, be a driver for Dave (he lost his driver’s license in December and the nearest bus stop is 9 km.), run errands and keep Dave company. His wife can help me with the house chores, including cleaning and cooking.

Besides feeling tired this morning, I was feeling sad. This isn’t a usual emotion for me, and in the past I would have busied myself with work to take my mind off the pain. This time I decided to sit with the pain and let the tears flow. I didn’t make a phone call to complain, or to get sympathy from a friend or family member. I decided to work through it myself. As I was having a small ‘pity’ party, I looked out the windows at the chickadees, goldfinches and pine siskins eating at the feeders. I watched as the birds flew in and out, sometimes stopping at the bird bath for a drink. I started feeling better. This is what happens when I am out with nature. I notice that when I feeling a bit down, it only take seconds of being outside before I feel the weight off my shoulders, and the lightness and happiness coming back.

Throughout this past year, I am learning that the key to my happiness is within. It isn’t dependent on other people or circumstances. I am also learning that it is okay to feel sadness and grief, as long as I don’t get stuck there. It seems the more I practice ‘leaning’ into my emotions and letting them ‘be’, the easier life flows for me. I have a different perspective on my life and I am realizing that abundance doesn’t come from a large bank account.

I wanted to share my latest insight with you while it was fresh inside. I just came back from a run and I am feeling 100% better. There are 3 horses down the road, which gallop towards me when they see me. I’d like to think it is for more than the carrots I bring! Anyway, they let me kiss them while I feed them and I love listening to their munching sounds. On my way home I heard the spring sounds—warblers in the creek, robins singing, belted kingfishers on their high perches, and the trill of the red-wing blackbirds. How can I feel sad listening to the cheeriest sounds in the world?

Have a wonderful day.

Please note: for more blogs/stories/brain tips please visit my new blog site: www.hollyeburne.com/blog Thank you for your support. Please let me know if I can help you in any way: hollyeburne@gmail.com

My blog posts have moved to www.hollyeburne.com/blog

Hello Everyone,

I am pleased to tell you that I have a new home on the internet… http://hollyeburne.com/blog/
I will continue sharing the lessons and insights as I grow along this journey with dementia.

If you visit my website– http://hollyeburne.com/ you will find information on how to keep your brain and memory, healthy and happy. You will have access to my ezine articles, as well as a free e-book on Overcoming Adversity with Grace.

Since I have been a Sport Physical Therapist for 28 years, I have included a couple of pages on back and knee rehab.

Please feel free to contact me at hollyeburne@gmail.com if you have any questions or topics you would like me to write about.

Thank you for your support.

Holly

To My Beautiful Wife

Thirty one years ago, August 25^th, I was walking down the aisle on the arm of my Dad, to marry the kindest man I have ever met—my husband, Dave.

Our anniversary, which was a few days ago, turned out to be one I will never forget. I want to share a card Dave picked out, and signed with x’s and o’s.

On the front cover was…To My Beautiful Wife and on the inside it said…

Somewhere between all the places we need to be

And all the things we need to do

Are those special times that belong to just the two of us

I hope you know how much

I look forward to those moments,

And how lucky I feel

To be sharing life with you.

When Dave handed the card to me (the moment he woke up) he had tears in his eyes and a beautiful smile. As I am reading the card, my eyes are filling.  Once again, Dave  is showing me how grateful he is for staying with him, despite his dementia. “I know I am not the same person you married. Thank you for putting up with me”, he often says. When I look over at Dave after reading the card, he is still standing there, smiling at me…”have you looked inside the card?” Tucked in the back flap is American money for the business trip I am taking that day. Dave is feeling so proud because he is still able to help me out in whatever way he can.

It is now 3 days later, and I brought the card on my trip because I wanted to savor the feeling of our unconditional love in quiet times, by myself. I find it ironic. Dave thanks me for what I give him, but I am not sure he understands the gifts he is giving me. Not the material ones–the ones which last forever. The carefully chosen cards, the tears and smiles when he tells me he loves me, and for the honesty he brings to my life. Alzheimer’s and dementia have a way of peeling back the superficial ‘social’ layers of a person. Their comments can be ‘brutally honest’—not too different from listening to a young child. Their behavior can be embarrassing, but who is the one embarrassed? I know our journey with dementia is in the middle stages and there is much to come, but for now I am really enjoying the sweetness of Dave, and the sweetness of our life together. I will let this journey unfold as it naturally is meant to do, learning and growing along the way.

Setting yourself free

Have you ever been so mad that your head feels like it is exploding? Or, so terrified, that you can’t breathe and you feel like you are going to pass out? Being human will bring on all sorts of moods and emotions. Fortunately, most of us manage to work through these difficult periods, but at what cost? A serious illness, accident or just plain bad luck? The movie, The Secret, tells us about the Law of Attraction–whatever you focus your attention on, you will get more of the same.  So, it is your choice. Do you want to feel joyful, abundant and happy? Or, would you rather feel sad and mad at the world?

In my earlier posts, I wrote about being on a rollercoaster of emotions with my husband, Dave, who has Frontotemporal Dementia. Every day I get plenty of practise on ’setting myself free’ . To give you an example…this morning I was mad (actually furious) because my husband, Dave, wouldn’t take out the garbage. He doesn’t seem to think the garbage is full enough. (Not sure which bag he is looking at because the one I am referring to is spilling over the top) I tell him that it stinks. He says it doesn’t. Well, I don’t need to be hit over the head with a 2 x4 to realize this is my problem, not his. Sighing as loud as I can, I rip the bag out of the container, and stomp out to the garbage bin. Within seconds I realize what I am doing. What a waste of energy. So I say… “hello frustration, I see you; you can’t hide” I repeat it a few more times, until I feel myself calming down, and I actually start smiling. To release it further, I put all of this negative emotion into an imaginary bubble out in front of me. I have a 2nd bubble to the right of it, with a golden screen between the 2 bubbles. A magnet in the 2nd bubble draws all of my power out of the 1st one (through the golden filter)and it starts filling with sparkling, brighter energy. After moving all of my power out of the 1^st into the 2nd bubble, I bring the 2^nd one back into my body and pop it–releasing the dynamic energy within. Bubble #1 is now tiny. I pop it and release it to its neutral form. This takes less than 10 seconds because energy moves faster than the speed of thought.

My second way of releasing negative emotions is ‘journaling’ in a small book. I keep writing until there are no more tears, or I can’t get any angrier. When I start feeling calm and more peaceful inside, I know I am at my deepest level.

These are a sample of what I do to set myself free. I would love to hear about your favourite ways.

Please note: My blog posts will now be posted within my website, at www.hollyeburne.com.  If you come and visit, you will also receive a Free 30 day plan for a Better Memory, plus articles I have written on Ezines.com. Thank you and hope to see you there.

What happens when you hold back your tears?

I have been told my whole life that I am strong. Even if it means holding back the tears while watching my Mom slowly pass away from cancer at age 60, or watching my young children, 3 and 5 years old, cry because they are losing the best Nana they have ever known. The type of Nana who plays on the floor and builds lego with them, or kicks a soccer ball around in the backyard. Or how about when I had to keep my emotions and fears in check, so that I didn’t lose it in Emergency when my 11 month old daughter was admitted with a heart arrythmia which required several more procedures and trips to Emergency over the course of her childhood. And what about my strength when I found out that my youngest, sister, Robin, 46, had colon cancer? Robin was the baby sister I took care of, the one whom I spoke to on the phone or emailed every day. 

Sure I have strength. I can carry on thinking positive thoughts and squishing my pain and grief inside so I won’t have to deal with it. But it has a way of catching up and it happened this past year.

Many times I have said that my husband’s diagnosis of frontotemporal dementia, has been a ‘tipping’ point in my life. Toughing through my days, pretending that all is well, stopped working for me this past winter. It took 2 years of living with the reality of Dave’s dementia before my body and mind began breaking down. My final breaking point came shortly after a major event with the Alzheimer’s Society (same month I received a phone call from a woman whose husband died years ago from FTD). Our family was selected to be the 2009 honouree family for the Alzheimer’s Walk for Memories. I was thrilled because I wanted to share the insights and lessons our family is learning from this challenging journey. 

For 3 months leading up to the Walk, there were dozens of media events-radio interviews, television bits, newspaper articles and pictures, rotary and sponsorship meetings etc. I managed to hold it together for 98% of the time and for the remaining 2%, I was pretty quick to recover. But I didn’t realize that every time I was telling my story, I had to screw the lid on my emotions tighter and tighter. They were starting to leak through…I didn’t like feeling the pain.

By early February when the event was over, I woke up with a fever and a flu which lasted 7 weeks. For the first time in 21 years–since my Mom died– I missed work. For the first time I was actually sick enough to lie in bed for 5 days. I am lucky my illness wasn’t more serious. I am also lucky because I understood the lesson. If I don’t learn to surrender to Dave’s condition–to accept and give myself permission to cry over slowly losing the sweetest man I have ever known—then I was going to end up being one of the 80% of caregivers of dementia ,who don’t do very well. If I wanted to do my best for Dave, my kids and me, I needed to change what I was doing.

I started to understand that if I wanted joy to return to my life, I needed to make room for it. The only way to do this is by releasing all of the junk and stuff I have collected over the years. Fortunately, energy moves quickly and in my next post, I will share 2 of my favourite releasing techniques.

Surrendering to Dementia

Usually when I sit down to write a post or an article, my head gets in the way. I begin editing and thinking too hard and the words don’t flow easily. I am slowly understanding why it happens–the first step to curing it. It is about  ‘surrendering’ or letting go of the process of writing. I need to stop worrying about what readers will think, and just write.

In fact, surrendering is a word which has taken on a whole different meaning since my husband, Dave, was diagnosed with Frontotemporal dementia, 2 ½ years ago. I have told you in earlier posts how beautifully and naturally Dave is surrendering or accepting his condition. What I didn’t know was that Dave would become my greatest teacher–greater than any personal development book or course I have taken; better than any business or life coaching session. A coach once told me that knowledge is worthless unless you can integrate it and use it in your life.  Until I was consciously watching, and experiencing life through Dave’s eyes–who surrenders 24 hours/day, 365 days/year to his challenges –I didn’t know the meaning of ‘accepting life as it is’.

Yesterday afternoon I was walking with a girlfriend of mine and we were laughing at a comment Dave made about getting lost on his way to  meet me in town. He was just kidding and having fun with his condition.  So far, he doesn’t have problems with directions or getting lost–one of the differences between FTD and Alzheimer’s. I was telling my friend how much I am learning about patience, when Dave asks 450 questions/day. About being flexible, when he brings home wagon wheels, instead of potato chips. And looking at the bigger picture when Dave decides to wear atrocious looking (but comfortable) shoes with his good outfit to a wedding. She was quick to tell me that all of these qualities and virtues fit under the big umbrella of surrendering, or letting go.

Every time I let go of how I think a situation or a feeling should be, I am ‘flowing’ with life. The more often I practice letting go, the calmer and more peaceful I feel deep inside. There is less resistance, life seems easier and each moment is more joyful. I am not kidding when I tell people I wouldn’t trade my life now for the one before Dave’s diagnosis…or even for the one I thought we would be having in our 50′s–retired, without kids underfoot.

As I said earlier, it is one thing to gain knowledge, such as the meaning of the word surrender; it is another thing applying it to your life. In my next post, I am going to write about how important it is to recognize and release your emotions, and will give you 1 or 2 energy tools to help you. Until then, try to be more aware of how you are feeling throughout the day. Notice how quickly you  stuff  your emotions down or…busy yourself to cover them up.

Caregiving for my husband with Frontotemporal Dementia

I have started this post at least 10 times and the words seem to get stuck inside me. They are stuck because my true feelings are just emerging after 2 ½ years of officially knowing my husband, Dave, has Frontotemporal dementia.

Life has been a blur since our initial visit to the neurologist. At first, I didn’t believe the doctor. It doesn’t matter that I have been seeing the signs—daily headaches, changing personality, not recognizing friends etc.— for at least 5 years, or that the CT scan shows large blackened areas in his temporal lobes, and his cognitive test scores are well below average. I thought the specialist made a mistake. Surely, science could reverse whatever was going on in Dave’s brain, or at least have drugs to slow it down. Better yet, cure it.

In the meantime I buried myself in work, or any activity which would make me so exhausted, I didn’t have to feel the pain and grief inside of me. It took 2 years for the reality of my life to finally hit me in the face. I will never forget the moment when I cried until I didn’t think I would stop. It was after a phone call from a woman whose husband had passed away from FTD eleven years ago. Our conversation was long, and for some reason, I asked her details of their journey and how she managed. Listening to her felt like someone was punching me in the solar plexus—I couldn’t get a breath. I felt like I was barely hanging on at this stage, so how was I going to survive the rest of the trip?

I knew I needed help—more than just going for my walks in the woods or bike ride along our country road.  As I reaching out for help (not easy for me to do), I met a wonderful life coach, Sue Ann, who works with energy. It may sound odd, but everything in our world, including our thoughts, is energy vibrating at different frequencies. Sue Ann taught me various energy releasing techniques (will describe them in future writings), which allows me to release feelings of grief and sadness, replacing them with happier one.

My life is rich and I wouldn’t trade it for the one before Dave’s diagnosis. There are still moments when I look at a couple in their 50’s holding hands, wondering if they are having intelligent conversations. But who knows what their stories are? I only know I have many blessings. A wonderful husband, who is not angry or ashamed about his dementia; who thanks me daily for accepting him the way he is, and for staying with him. I have beautiful adult children, who are personally growing every day through this challenge–shining their light, like their gentle father, for the world to see.  

I know our journey has a ways to go, but I feel calm and more peaceful inside, believing I will be able to handle what comes along. I have my running, cycling, hiking, my family and friends to thank. Friends at www.ftdsupportforum.com; www.facebook.com –’FTD-Walking the Path’ group; http://www.irenetdjftd.blogspot.com; www.boostershotcaregiver.wordpress.com …..are opening up my world.  I am realizing there are thousands of families travelling the same road as ours.

We are handed these challenges for very good reasons. It usually takes some time, often years, to realize what they are. In my case, Dave is meant to be my teacher of  ‘surrendering’ to life–accepting it for what it is, but still doing your best to enjoy every moment. He is teaching me about ‘patience’ when he asks 450 questions a day; ‘flexibility’ because I don’t know what today will bring—is this the day he has another seizure or when his driver’s license will be taken away?  He is teaching me to ‘live in the moment’–that is all we are guaranteed.  Dave doesn’t beat himself up for his mistakes of yesterday, and he is too busy focusing on today, to worry about tomorrow. He knows he will die, but so will the rest of us. I am gaining far more than I am losing. But I had to work through the process of feeling the darkness and the pain, and I am finally giving myself permission to feel it, instead of stuffing it down and pretending it doesn’t exist. Even now as I am writing this, my eyes are filling, but it is okay. This is part of being human and I am more accepting of it.

Fortunately for me, I have Dave who wakes up every morning with a child-like smile, ready to live another day–accepting whatever it brings. Our relationship is changing; it is going far deeper than I ever imagined 31 years ago…when I said ‘I do’.  

I will continue growing along this journey with dementia and be grateful for it–reminding myself that you need ‘darkness to see the stars’.

How does my husband feel about having dementia?

In my earlier posts, I told you about my husband, Dave, 59, who has Frontotemporal dementia (FTD). I am trying to understand what it is must be like for Dave, waking up in the morning knowing he has dementia–with no known cure or drugs slowing it down.  Does he feel angry, sad or confused? Does he have the insight to realize he is changing? Is he afraid of his future?

Since FTD affects the language area, our conversations are becoming shorter and simpler. I am making notes while Dave is still able to communicate his thoughts and here are some of them…

It was the day after we receive news about Dave’s diagnosis, when he asks…”why did the doctor tells us to update our wills? Doesn’t he think I will live very long?” Taking a brief second to compose myself, I reply…”It is a good idea that every one updates their wills; no one is guaranteed of living another day”. 

Three weeks later, Dave was reaching for his ginkgo and nutritional supplements, commenting…”I might  not be able to do anything about my brain, but I am going to do everything I can to keep my body healthy”. It has been 2 1/2 years and he continues to exercise daily, remaining physically healthy.

Dave and I are relaxing outside on our deck, when I ask..”are you angry or frustrated that you have dementia?” (this is one of the questions I have asked him a few times). Without hesitating, Dave says “no…my only worry is that I may have given this to the kids”. Amazingly, Dave doesn’t consider the challenges he is going through–just what our kids might have to endure.

One day while out for a bike ride, Dave says he couldn’t imagine his life without exercise. “I can think out here and plan what to do next. I can’t think as clearly when I am home”.

We enjoy running together a few times a week. During one of our runs, I was wondering what color Dave would choose to describe his brain. He said, “black”.  ” Why black?”  ”Because my brain is dying”. “Do you know what that means?” I tentatively ask.   Without hesitating, he says…”it means I will die”. It is surprising  how calmly we are chatting about this. ”Are you afraid to die?”–not sure I was ready for his answer.  ”No…I only wish I could travel to the places we talked about”. Quickly, before my emotions catch up, I reassure him…”we will make it a priority to do as much traveling as we can over the next 2 years”. Dave smiles gently, knowing I will do everything I can to make it happen.

Almost daily, Dave thanks me and tells me how glad he is that I ‘put up with him’…”I am not the same person I was a few years ago or when you married me”.  Every time he makes the comment, I remind him what he would do if the situation were reversed. He nods his head, knowing the answer.

Watching Dave, and listening to his short, simple comments, it is beautiful how he is surrendering completely to his dementia–he continues living his best life, despite the changes. How fortunate for the kids and I to have this great teacher, and role model in our lives.

How are my kids dealing with their Dad’s dementia?

This isn’t easy writing about how my 2 kids are dealing with their Dad’s dementia because I am not sure.  The bond between them is extremely close and they share their deepest thoughts and tears with each other–not me. I can only tell you my impressions and a couple of comments they made.

My daughter, Amy, 25, has had an easier time accepting her Dad’s condition than our son, Kyle, 27. She saw the signs a year before he was officially diagnosed with Frontotemporal dementia-she noticed his vacant stares and not recognizing his friends he has known for years. So when I phoned her with the news from the doctor, she was very upset, but not surprised.  Amy has many sad, teary moments but hasn’t gone through the anger phase like her brother. Besides her own grief, she seems to be aware of my responsibilities, and burden of caring for someone with dementia, along with knowing that I am losing the man I married 31 years ago.

Kyle’s journey is quite different. He has been slower believing that his Dad has a condition that isn’t reversible, and without a cure. He is extremely sad –his dad is his hero–but he is also very angry that his father, who is a very gentle man, has to suffer with such a debilitating disease. Kyle often rants and raves about many things that make him mad-his job, the government, his financial situation and more. Unfortunately, he uses me as his scapegoat. During those times when he wants to yell at someone, he gives me a call; that was until this past winter when I reached my boiling point. During one of his angry moments, when I was holding the phone about 6 inches from my ear, I told him to stop. I said that I had enough of his attitude and that he needs to find some other way to release his anger. I don’t know whether he heard how close I was to tears or whether he finally understood that I am dealing with my own grief and sadness. Since then, Kyle seems to be more accepting of his situation. I have noticed that he is more patient when he hears me ‘boss’ or tell his dad to do things, such as have a shower or change his clothes after a few days, or when I backseat drive, telling him to quit looking out the side window and pay attention to the road.

Yesterday while Kyle was helping me make dinner, he said he was surprised at how fast his dad is deteriorating. The more time he spends living at home, the more he understands how life for all of us is changing. He made a comment about needing to stick together as a family and that he is glad that his dad is still alive; despite losing the one he has known all of his life. I am not sensing anger, rather calm acceptance. Kyle also made a comment about knowing that he may have the same gene as his dad and that every time he has a headache or forgets something, he wonders. He looked at my face, reading my mind and said that he will be able to deal with it if the time comes.  

I could have gone into more details about the kids but it is pretty emotional for me to write about, so I will leave it at that.