Forgiveness

This morning I was reading a book by Jack Kornfield, A Lamp in the Darkness–illuminating the Path Through Difficult Times. There were many lines that jumped off the page and one of them had to do with forgiveness. Kornfield said: “forgiveness is giving up all hope for a better past”.

Forgiveness is something I practiced yesterday. In the morning I had left Dave for a couple of hours to take our dog to the vet and when I came home there was a mess in the bathroom. Without getting too graphic, Dave wasn’t able to make it to the toilet in time so there was po-p everywhere–counter, floor, bath mat, ceiling pole, and of course all over the raised toilet seat. This is the 4th episode in a month and for some reason I had my ‘head in the sand’ thinking I wouldn’t have to clean up after my husband. With a diagnosis of dementia and ALS who was I kidding? 

So while proceeding to clean Dave and the bathroom I told him that if he was going to keep having accidents, and if I wasn’t able to take care of him, he couldn’t live at home. I knew I wasn’t being nice–and didn’t really mean what I was saying–but the bubble burst. I was being completely honest with him and it felt awful. This journey is harder and longer than I imagined.

Within minutes of my little tantrum, I was calmer and as I was watching (and helping) Dave step over a ledge into the shower I was reminded of how many challenges he is facing. Far more than me and with greater acceptance and patience. 

Yesterday was a test for self-forgiveness. I forgive myself for not being perfect; for not keeping a lid on my emotions; and for not being compassionate. I recognize the ups and downs of being human and after apologizing to Dave, I was able to take the lesson and move on with the rest of my day.

And the journey continues…one moment, and one day at a time.

NOTE: FYI…we had another incident today and I have to tell you something: I’m learning!

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Learning to Make Life Simpler

Being in nature and watching the natural rhythms of it inspires me live with more simplicity and ease. Tonight is a perfect example. I was doing my nightly watering of our many potted flowers and noticed how they are struggling with our hot dry summer weather. Despite their premium soil, daily waterings and weekly fertilizing, they aren’t holding a candle to the little volunteer petunias ( plants not intentionally planted by humans) which are growing between paving stones. Until this past week I ignored these little darlings and only recently gave them a bit of water. So why can some flowers thrive without effort and fanfare and others die while living in optimal conditions?

Thinking about the difference between these flowers reminds me of my husband Dave, and me. I’m the one planted in rich soil (ie.optimal physical and mental abilities) and yet it is Dave living every moment with ALS and FTD (frontotemporal dementia) who is thriving with greater ease. He isn’t waking up at night wondering how he will shower next month when his legs won’t be strong enough to step over the ledge; or how he will breathe as his muscles weaken. Last month after several incontinent moments, I brought out the disposable underwear and without any fanfare he put them on. He accepted his new reality with such ease. Dave takes one day at a time enjoying simple pleasures like making his toast in the morning or sitting for hours working on his jigsaw puzzle.

Not for one second will I admit that my journey as a carer is easy or simple but I will admit that there are times when I spend too much energy worrying about what ‘might’ happen. Time and time again, things work out better than I imagined. It was only 2 months ago when we were sitting in the doctor’s office and I was in tears because I didn’t know how I was going to provide the equipment so Dave could continue living at home. Through a series of happenings (doctor’s referrals/tests) some of the equipment was delivered yesterday from the Red Cross, the ALS Society, and through the Palliative Care program. And as a bonus, the gentleman who delivered the equipment is a carpenter and took measurements to build a ramp to the outside, and platforms to raise furniture making easier for big Dave (6’4″) to get out of them.

volunteer petunia

I have decided that my goal for today (taking a page out of Dave’s book: living one day at a time because there are no guarantees of tomorrow) is to focus on simplicity. When I notice tension in my neck and shoulders I’ll relax them; when I’m moving too quickly I will slow down; and when I am holding my breath, I will breathe more deeply and with the same ease that Dave and the little volunteers are teaching me.

 

Living with Dignity

In our country, dying with dignity is against the law. Someone who has been diagnosed with a terminal illness such as ALS, dementia, and Huntington’s Chorea are not allowed to lawful assist in their passing.

Over the past month, I have been processing the news that my husband Dave has ALS. Even though I have known there was something going on in addition to his cognitive challenges of frontotemporal dementia (FTD), it hit me hard every time a doctor (3 of them) looked at me and said, “I’m sorry, there is no other explanation for your husband’s weakness other than ALS”. The final and conclusive tests were done on Friday with nerve conduction and EMG’s tests. There is no room for ‘maybe’s’.

The saddest part of this is not that I’m losing my husband. I have been living with the reality that I am losing a little more of Dave every day since he  was initially diagnosed with dementia 7 1/2 years ago. What is sad is knowing the future of ALS complications and not being able to discuss them with him. Dave thinks his leg and stomach muscles are normal despite his frequent falls, difficulties getting out of a chair or increased choking on food.

If I was to look for small blessings in having ALS combined with FTD is that Dave isn’t wasting precious energy living in the future. He isn’t angry because life has thrown him a couple of big curve balls. He isn’t losing sleep over what might happen tomorrow, next week or next month. Instead he uses his energy to walk from point A to B, to string words together for a sentence, and to work on his 1,000 piece jigsaw puzzle. He loves to scan our acreage for wildlife and gets excited about a deer walking through our garden. (You can bet I don’t share the same excitement as they eat the tops off my geraniums and every single rose off a beautiful bush)

Dave is definitely living in the present and despite his many challenges he seems content. When I help him into bed after a fall, he thanks me; when I bring him a snack with water and tell him I love him, he says “you still love me even though I’m not the same person?” And then follows it a slightly slurred…”I love you too”.

My husband is living with dignity and I am going to do everything I can to help him continue living with this quality of life in our home. There are many times when I feel the fear because I don’t know the ‘how’ but I believe that as long as I hold the intention with the feelings and thoughts inside of me, it will happen. I just have to pause and look at the new people who have entered our lives over the past month and are making this journey much easier–doctors, best friends, fellow workers. Thank you to all of you.

100 things leading to a single choice

100 things, leading to a single choice is an article I read this morning. It was written by a 55-year-old retired family doctor, Martin Welsh, in 2009 who was diagnosed with ALS. Martin spoke about enjoying 100 things each day but when a disease such as ALS progresses and more things are taken off your list, there is a point when quantity of life outweighs quality. It is about life versus living.

This past month we received the news that in addition to frontotemporal dementia, my husband, Dave has ALS. I am doing my best to stay present but my busy little mind doesn’t stop worrying. For the first time in over 7 years I am doubting my ability to have Dave live at home for much longer. He is 6’4¨ weighing 238 pounds (feels like 500) when I am trying to lift him up after a fall. He has lost so much strength in his legs and is unable to help at all.

This journey is the toughest I have been on in my entire life. I thought working while raising children was tough but it doesn’t hold a candle to the  emotional and physical challenges that come with watching someone you love pass away slowly–mentally and physically.

It is interesting how quickly my perspective can change. I decided to take a short break while writing this blog to sit outside with our cats and within minutes I was feeling lighter.  I knew what I wanted to do and that was to write my own list of 100 things that my husband is still able to do: dress himself (with a little help with his socks), make his toast, pour his coffee, walk to the car (with a walker), pet our dog and cats, pat my back when I give him a kiss, brush his teeth, work on his jigsaw puzzle, use a fork, thank me for everything I do for him, talk on the phone, have a stand-up shower and many more.

What’s your list of 100 essential things to the life you live?

 

What if I Didn’t Assume?

It is amazing how much chaos and stress I can create in my little brain by making assumptions.

This morning was a perfect example. My son phoned to tell me that he was coming to visit us this weekend (13 hour car trip) with his 4-month Akita puppy, Mika. He wants to spend some time with his Dad for father’s day and it happens to coincide with his one of his best friend’s stag. My first response was great!

After my son reassured me that he would do his best to keep the puppy out of the garden, my little mind went into high gear. All I could think of was trampled flowers, our dog and 2 cats being disrupted by this puppy energy, and where would everyone sleep? The timing couldn’t be worse.

This weekend I am hosting an annual girls retreat with 2 of my favourite girlfriends. And, as a special present for mother’s day, my daughter is cooking, cleaning, giving us pedicures and taking care of the pets so I can relax and enjoy the time with my friends. Are you kidding? I feel anything but relaxed when I think of this weekend.

Since I was in no mood to sit at my desk and start working, I went for a hike with our springer spaniel. Somehow I needed to process the news and gain a different perspective because I sure didn’t like the one that was swirling in my head.

After an hour of strenuous hiking uphill my brain slowed down long enough for me to hear a message: what if I wasn’t to assume a thing? Don’t assume that my garden will be ruined or that our pets will be upset by the puppy intruder, or it won’t be fun because of things that ‘might’ happen.

I kept asking myself the same question: how do I feel if I don’t assume anything?  After a few minutes it was clear– I felt lighter, my head didn’t hurt, and I actually had a smile on my face thinking about ALL of our company this weekend. Who knows? It could be far better than I assumed.

Note:

It has been a few hours since my hike, and I realize this situation is another reminder that no matter how much I plan, or want things to be perfect there is larger universal plan at work. This isn’t any different than my journey with husband, Dave, and his Frontotemporal dementia. The more I am living in the flow with all of the changes happening in my life, the easier it is to enjoy what is in my life right now.