Finding a resting place for Beth

Beth had wanted her ashes to be buried under some blackberry bushes at one of her favourite parks on the island. Two weekends ago, along with Cheryl and two other of my friends, we went in search of the perfect spot.

I knew I had found it when I came across a small meadow with a big clump of bushes in the centre, surrounded by daisies in full bloom. The edge of the meadow was covered with huge wild rose bushes, about 8 feet tall.

In amongst the bushes were blackberry plants.

I was able to dig a hole at the base. Here I am holding Beth’s ashes.

As I was holding the box I remembered how many times I had wished she were the size of a toddler so that I could pick her up off the floor when she fell or could carry her from one room to another. I often felt helpless because I couldn’t do those things and when I tried getting her into a better position I ended up hurting her muscles. She was so fragile the last few months.

I was a bit reluctant to open the box because I didn’t know what to expect. As there weren’t ashes falling out of the box I figured they were in a bag so I needed to get them out of the bag so they could decompose in the ground. For those who might have a morbid curiosity, you can read the rest of this paragraph. For those who don’t… skip ahead to the next one. Ashes are heavy. I would say the box was at least ten pounds in weight. There were soft ashes but also harder tiny pieces that reminded me of oyster shells that we used to feed the chickens on the farm so that their egg shells would be firm. Calcium.

We hadn’t planned to say any special words. I thought about poems or excerpts from books that Beth liked. But Beth liked and read so many things that I didn’t know where to start. All the heartfelt words were said while she was still alive. So instead we listened to the birds and the breeze and smelled the mossy soil and the salt water in the air. Some of the things Beth loved about the area.

The meadow was about 50 feet away from a bay. Here’s the view from her resting place. Daisies in the front, roses to the left and beyond the evergreens is the water.

We went for a walk and Cheryl and I reminisced about our trips with Beth – how she’d struggle over these tree roots or those rocks. And how at this point she actually had to get out of her chair because the two of us couldn’t maneuver the chair around the obstacles. Or how at this point Beth would be dangling off the edge of the cliff.

We saw a heron on the dock.  This past year Beth and I had seen a number of herons.  To me they'll be forever linked with her.

Back in the car, before we left the area I played a song Beth requested be played. It’s the Gift to Be Simple by the King’s Singers. I’ve found a youtube version – the song is the first 2 minutes - you can ignore the rest.

It is a lovely song that many will be familiar with – perhaps you sang it at church or around the campfire? I can see why the song appealed to Beth. She’s finally free of all the pain and all the difficulties she had to face.

Rest in peace, Beth. Be free and fly.

Corsets, Tattoos, Skulls and Herons

A big thank you to everyone who celebrated Beth’s life by wearing a corset, tattoo or anything skull-related this past Sunday on May 19th, Beth's birthday.

I had my parents take this photo of me at the Winnipeg airport while waiting for my flight back to Victoria.

This one is of Cheryl. No corset, but with a Hello Kitty/dragon tattoo and goth tank top.

If you have a photo or a blog link that you’d like to share, please send the photo to linda dot mcclung @shaw.ca. Blog links can be added as a comment.

Someone recently asked me whether I would start blogging more frequently now that Elizabeth is gone. Not sure how frequently I’ll write, but will give it a try. Next post I’ll write about my trip to Manitoba.

I haven’t written for a while as it has been a busy few weeks. Cheryl has been over all week helping me sort stuff. We’ve found over 300 graphic novels and have prepared them for a comic book expo in Victoria next month. We also sorted clothes and got rid of some of the medical equipment.

In between all the hard work we took a few breaks to check out the local sites all the while debating whether Beth would have liked the place or not.

Here’s Floyd’s Diner which has been featured on the Food Network and serves amazing food.

We had burgers for lunch and I didn’t eat for the rest of the day. Beth and I shared a love for thick milkshakes.  This milkshake was so think I think I worked off all the calories just by trying to get the shake through the straw!  The food was awesome!  The restaurant was wheelchair accessible which a bonus for those with accessibility issues.  It would have been a bit too noisy for Beth though.

Another day we went to Witty’s lagoon near the naval base. It’s a huge lagoon with mostly sandy beaches.

 

I had totally forgotten about the lagoon – Beth and I hadn’t been there in about 15 years. It’s a great place for birdwatching and she would have loved it. Cheryl and I saw at least half a dozen herons. 

Vampire fangs, temp tattoos, corsets and skulls

Aviatrix had a great idea - Could you have a part of the event that people touched by Elizabeth all over the world can participate in? I don't mean a webcast, or something we watch, but something we do or wear. Something out of the ordinary enough that people will ask us why, and we can tell them about Elizabeth. If anyone would like to participate, I propose that on May 19th you apply a temporary tattoo and if you own something with skulls on them or own a corset that you go wear them. On May 19th Elizabeth would have turned 43. You may recall that she challenged readers on a previous birthday to go outdoors and experience life, and so many of you did. I think Elizabeth would have liked a remembrance from her virtual family. I think Elizabeth would have also approved of the lady who's doing her cremation. When I gave her Beth's yukata kimono she asked if there was anything else. I gave her one of Beth's skel-animal plushies and Beth's new fangs. She asked if I'd like her to put them on. I said she didn't have to, but she was really cool about and with a big grin said she would. She also gave me some tips on scattering ashes illegally. Will keep you posted on a local celebration of life.

Remembering Elizabeth

Elizabeth wanted to be cremated and have her ashes buried under a blackberry bush (a favourite summer activity for her was picking and eating blackberries). She didn't want a funeral, but Cheryl and I think some celebration of her life is in order. Elizabeth was a unique person so her celebration ought to be unique too, right? Any suggestions? Two thoughts that come to mind are having a wake at a local pub or having a picnic at one of her favourite parks. I will post periodically as plans are finalized.

Giving thanks

Thursday was American Thanksgiving, so it seems an appropriate time for me to share some of the things for which I am thankful.

1. My health. I’ve been battling a cough for the last 8 weeks, but am on the home stretch now. Even with the cough, I see myself fortunate in that I am well enough to work, to do chores, to exercise with Beth, and to support her physically. My memory isn’t so great, but I think not enough REM sleep does that to a person.

2. Beth is still alive and there are moments where we can be together. There are a lot of ups and downs and neither of us are perfect, but we both want to have a better relationship. And we keep working towards that.

3. BC Palliative Benefits program and hospice. Beth was registered palliative earlier this year, which meant some of her medications were free of charge. This has saved me hundreds of dollars each month – money which I didn’t have to begin with. Beth was registered with the Hospice Society a few months back, and while we haven’t used their services much yet, Beth was able to talk to a counselor for a few weeks. Hopefully, she can do more as she is able.

4. My job. Islands Trust has a mandate to preserve and protect the southern Gulf Islands between Vancouver Island and the mainland of British Columbia. It does this by regulating planning and development on the island, and preserving pieces of land in trust. The work has little stress, which is something I appreciate at the moment. The people I work with are great, especially my boss. He is really flexible when it comes to my needing to take time off for care giving as he himself was a primary caregiver a couple of years ago.

5. Family. We don’t have any family in the area, but I appreciate the occasional phone calls from my parents and my sister-in-law. My parents flew me out to visit them this summer and attend my grandparents’ 60th anniversary. It was wonderful to reconnect with them. I am also excited about my cousin moving to Victoria this winter to work at CFB Esquimalt as a military police officer. I haven’t seen him in years.

6. Friends. Words of encouragement are priceless. Beth feels so alienated so any correspondence would help her feel part of the living. I always feel stronger when I know there are people behind me supporting me. Also, while I was unemployed a number of friendly readers reached out and assisted us -people we have corresponded with for years but also complete strangers who to this day we don’t have their address to even send a thank you card. If you are reading this and you were one of them – thank you so much. I don’t know what we would have done without you.

Thank you to those of you who have purchased off the Amazon wishlist (especially when accessed through Beth’s blog so that she receives a small percentage of what you paid as a credit she can put toward her purchases). Someone has kept us supplied with Florastor which Beth needs to aid her digestion (P.S. I only have half a bottle left). Other medical items on the wishlist we always need restocking are the tegaderm patches (which prevent her pain patches from coming off) and the emla cream or other topical anaesthetic for medical tests. Batteries (AA and AAA) are always needed and my rechargeable ones aren’t recharging any more. The AAA batteries are used for Beth’s noise cancelling headphones which she couldn’t survive without, mp3 players for working through the pain while exercising, flashlights (so I can keep most of the lights off while Beth is sleeping), computer mice and other gadgets.

Purchases for the soul, rather than the body, have been equally important – books and DVDs to help Beth live beyond the pain, books for me to escape for a few hours, and DVDs we watch together as a couple. Those are special times for us together.

Financial donations go towards medications mostly, but also recently have been able to buy Beth some clothes she desperately needed – pajamas, sweats, tshirts and hoodies. Next on the list – warm socks, wheelchair gloves (hers have split at the seams), more bottoms and a haircut for each of us.

While my job is great, the pay is not. There isn’t enough for extras no matter how nice or needed they might be. One of the reasons Beth did not go to Hospice for respite is that you had to pay for a week – something we really couldn’t do. We have come up with an alternative, which is possible with your help. We’d like to give Beth a two night stay at a local hotel in Victoria. There are some very nice hotels downtown and with winter rates they would be less than $100/night. Beth would still be able to get care workers to come and check on her and make sure she has meals. They could go for walks with her to Starbucks or to the museum. And she’d still have access to the internet. I would be close enough that she could call me in an emergency. We are hoping to give Beth this respite/mini holiday in mid-December before the prices go up. If you could help with that, please click the donate button on the right.

I have my own mini-respite in the first week of December. I am going up to Gabriola Island to do some work in our office there. I’ll be on Gabriola for two days and will spend the night in Nanaimo at a nice hotel where I can relax – go for a walk, read a book, soak in the whirlpool, or whatever else strikes my fancy. It is only one night, but it will be a welcome break.

Asking for help as a caregiver

One of the hardest things I’ve had to learn as a caregiver is to ask for help. Turns out I am not alone. I share this problem with a lot of caregivers, especially those who are taking care of their spouses. We’ve been taught in society that it is our responsibility to take care of our spouses in sickness and in health. This is especially true for women as they are expected to take care of others – their children, their spouses, their elderly parents, etc.

In reading caregiving books and speaking to other caregivers, I’ve been told that often people want to help but don’t know how. As as one person said, if we stepped back for a minute we can figure out all kinds of ways for people to pitch in. So, I’ve taken a few minutes to figure out ways people can help if they don’t leave nearby and that’s what this blog is about.

When I was working full-time I learned to accept help from the local health authority which brought in homecare workers to give Beth lunch while I was away and for a while, give me one night a week where I could sleep uninterrupted through the night. I also had a steady income and medical benefits which covered the majority of medications. This gave me some semblance of stability and control over life.

Being unemployed has taken so much of that stability away. My employment insurance income doesn’t cover all our basic costs, never mind the extras like clothing, haircuts, car repairs, and many others. I try to shelter the stress of finance from Beth, but it still manages to leak out especially if I am tired or cranky. She’s really sensitive about it and with not being able to put occurrences into a time perspective it’s all there in the forefront of her brain as if I said it an hour ago.

Beth mentioned in her recent blog that for those who wanted to send a Christmas gift, the best gift you could give would be to help with medical costs. This would take the edge off the financial worries. She doesn’t know how much the costs are, just that they are significant. I handle all the monetary costs, with the exception of the occasional donation people specifically give for the postcard project or money Beth has made on selling her own books. Please don’t mention actual costs to Beth if you are talking with her as that will cause her a lot of stress (and as a result, me too!).

If you would like to help with the basic expenses, I would be grateful. Monetary donations through paypal (see the button to the right of this blog), purchasing the actual items (please let me know to avoid duplicates) or donating loyalty points are ways anyone can help. So, if you can help fiscally, here’s a list of basic things we need:

Medications… the biggies are:
Lyrica – this costs about $90 for a two-week supply if we get it through the pharmacy here in Canada, about half that if we order it online through a pharmacy in the UK. Without it Beth gets a lot of seizures and increased nerve pain.
Antidepressants – Beth’s anti-depressant is from the UK because Pfizer doesn’t produce it here in North America. $30/month. It’s the only one we found that works for Beth. Also an anti-depressant for me to help me cope with everything that life throws at me.
Fentynol patch – this is Beth’s main source of pain control – about $150/month. Without it the pain becomes unbearable – Beth sleeps interrupted with teeth clenched and muscle and bone pain all over. They take about 12 hours to work and last about 2 days. We have to change them regularly so that she’s never without the drugs in her system.
Tramacet – Beth’s breakthrough pain medication. This pill takes about 20 minutes to kick in and really helps on bad days and in the mornings to get her full hours of sleep.
Tramadol – Beth’s night pain pills – they cost about $50 a month, but we’ve got a month’s worth of samples at the moment.
Florastor – to replace the flora in the intestines and regulate bowel irritability ($30/month)
Birth control pills for both of us – as hormone replacement for Beth as her body isn’t producing estrogen and as a mood stabilizer for me.
Muscle relaxants – to ease some of the muscle pain before bed

Other basics –
Crest toothpaste and toothbrushes
Ear plugs – the orange foam ones from Flents that are rated 33 NRR
Gatorade powder or drinks – We have a giant tin of lemon flavoured crystals, but could use other flavours to break up the monotony
Dill Pickles and small manzanilla olives (stuffed with pimentos if anything) – to aid in digestion, moving things through the intestines
Grapes and grape juice – to add soft fibre to her diet and keep her regular
Gasoline/petrol for the van to take Beth to appointments, getting me to the grocery stores, etc.
Haircuts – neither of us have had one since spring
Clothing – due to Beth’s edema there are very few of her clothes which still fit her. She could really use some underwear, thick socks (does anyone know how to darn wool ones with holes?), and comfortable clothes to wear during the day. Sizing is a bit tricky, especially with leg length, so if you want to help, please let me know and I’ll give you more info.
Batteries – AAA and AA
Lifeline response phone service - $24/mo

If you want to help, but don’t have any disposable income, another way to help would be to transfer loyalty points if you have them. Ask and I’ll give you the account numbers.

I have the following Canadian loyalty points cards:
Airmiles - I often trade in for gasoline coupons and the occasional Starbucks card so that I can go out and have a treat sometimes when the homecare workers are here.
Save On Foods – for groceries or gas
Thrifty Foods – for groceries
Shoppers Drug Mart Optimum – for over the counter meds (muscle relaxants, emla topical cream, etc)

In the US, I have:
Albertson’s Preferred – for when I’m in Port Angeles, WA
Rite Aid Wellness + - for when I’m in Port Angeles, WA

I know we are not the only ones having a hard time financially, so if you can’t help, please do not feel bad. You could provide the emotional help – an encouraging letter or card in the post. Or a photo of you so that Beth can be reminded who you are and feel connected to someone.

My next task is to see if I can get more hours of homecare workers so that I can spend more time on job hunting and find that stable income and with any luck, some medical benefits, too.

A little miracle

When we came back from our road trip we noticed our portable air conditioner in the living room wasn’t cooling like it used to. It was four years old and pretty much goes 24/7 all spring, summer and fall. It has done a remarkable job cooling down all of the apartment (except for the study which has its own a/c) for such a long time. It not cooling properly really had me worried – I couldn’t afford to buy a new one, could I find someone to repair it? How much would that cost me? We couldn’t live without it – Beth would really overheat when she left the study. And a heat wave was on its way.

I called all the air conditioner businesses and they all said fixing a portable wasn’t worth their time. Go buy a new one. When I explained I was unemployed they still didn’t change their mind. Finally, I found an old guy who repaired appliances. He was probably around 80 years old, had very limited vision and puttered around outside his shop. He and I spent a couple of hours taking the a/c apart and cleaning it out. Fortunately, he didn’t charge much. The a/c was working a bit better, but still not cooling like it used to.

I was telling my friend here in Victoria about it on the phone one evening. We were arranging when to meet up for a cup of tea. It was my turn to host – and we were going to try out some of the tea we bought at Chado’s in California. A day or two later she was forwarding links to a/c ads and asking me which was closest to the one I currently had. When she arrived a few days later for tea, she said she needed some help getting something out of the vehicle, and to bring my trolley.

Apparently we have a guardian angel. One of my friend’s connections bought us a new portable air conditioner which was a new version of our current model. It was amazing. Someone who has probably never met us found out we had a need and they filled it. It was humbling. It took a huge weight of worry off my shoulders. And it was easy to install – just had to take it out of the box and switch the air vent from the old a/c to the new one. No fitting hoses and panels into the window. It was all already there. We set it up in the middle of the heat wave and it has made a big difference to Beth’s quality of life. Mine, too, as I spend most of my day in the living room. It works so well I’m usually wearing a sweatshirt inside. And, with the help of a couple of fans, the cool air reaches the bedroom and bathroom. This is a big bonus as when it was hot Beth would go into heat exhaustion sitting in the bathroom and in the bedroom I couldn’t wake her up because she would be so overheated.

It has been a few weeks and the air conditioner is still working great. I don’t know who was so generous to buy us the new air conditioner, but I am very grateful. What was an impossibly huge expense for me was possible for someone else. Their generosity was a real miracle. Being unemployed and trying to live off employment insurance cheques is pretty difficult. There are always decisions to be made as to what can we live without. After paying rent, groceries and medications, there isn't much left. There's no way I could have replaced the a/c on my own.

So, guardian angel, if you’re out there reading, I just wanted to say ‘THANKS!’