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!’

News From the Road

Hi All

Cheryl here...

Just a real quick blog to update you on Beth and the San Diego adventures...

The camera was found! That was a very happy moment.

We DID ComicCon and some sightseeing. Beth is pretty tired by this point so it may be a day or two before she updates her blog. I'll let her tell you of her adventures.

The Case of the Missing Scooper Plates

Thanks to everyone who sent medical supplies. I tried to send personal emails to all, but may have missed a few. Sorry about that! All the supplies have been really useful. Your generosity has been appreciated and I don't think I'll ever need to buy chapstick, aspirin or echinacea again. Ear plugs and florastar, on the other hand, we can never have enough.

Someone kindly bought some of these blue scooper plates this past winter but they never arrived. If you ordered them and had them sent to our address, you may want to contact the seller to see where they went missing.

Someone also bought these sandstone scooper plates and they haven't arrived either.

Can you solve these mysteries?

Ready... set...

For those of you who read Screw Bronze, you’ll know that Beth has a dream to go to Sakuracon in Seattle April 2-4th. Cheryl and I would love to make the dream come true (we want to go too!) and think with your help we can make that happen.

A few of her readers have emailed her to ask how they can help. So we thought it might be useful for everyone to see what our expenses are. I’ve also put deadlines next to items if applicable.

Convention Tickets - $150 by March 8th – Beth committed to sell books on Amazon/ebay to pay for these.

Hotel – 3 nights - $520, $30 parking – reserved! It’s Easter Weekend so we wanted to get our room before it’s too late. We’re staying at the Holiday Inn in downtown Seattle. It’s far enough away from the convention that it’s relatively quiet and will give us a good night’s sleep. It has suites and depending on the room type, free continental breakfast. It is also more reasonable than most other hotels.

Coho Ferry - round trip (Victoria – Port Angeles) - $151 – reserve ASAP! This year we need to take NDY, Beth’s power chair as she’s too weak to hold herself up all day. NDY will give her full back and head support and also has tilt and recline in case she has seizures or is too weak to stay upright. With a minor tilt she is cradled in the chair. We need to take our van as NDY won’t fit into Cheryl’s Jeep. We take the Coho ferry from Victoria to Port Angeles and then spend the night at Cheryl’s. Then we drive across the Olympic Peninsula and catch the Washington ferry to Seattle. The Coho has a limited number of reservations for each sailing and as this is Easter weekend we want reservations. The alternative is to arrive at the terminal and park the vehicle the night before and then walk/roll down the next morning several hours before the ferry leaves. This would really wear Beth out.

Gas - $60 – we’ll pick up the cheaper American gas in Port Angeles.
Washington Ferry – round trip (Bainbridge – Seattle) - $40 – need to take this ferry to get from the Olympic Peninsula to downtown Seattle.

Parking – $24/day reserved at least 30 days in advance (March 1st) at the Convention Centre = $75. This will cost about the same or less than getting a taxi that takes the three of us and NDY, Beth’s power chair. Having it at the Convention Centre means if the noise and people get too much for Beth (or Cheryl or I for that matter) we can sit in the van for a while and chill out. I need to check, but it may even let us come and go multiple times a day which would mean we could go back to the hotel for naps and return in the evening.

Food - $200 – we will buy groceries at the grocery store nearby our hotel and this will cover most of our meals. We usually have take out one night for a change.

Costume for Beth – to be determined – but it’s gotta be hot! Suggestions are welcome. One reader suggested this black lace dress with a corset bodice. Beth would also like me and Cheryl to dress up a bit. She has offered to share her hair accessories with me. We’ll see how that goes.

Spending money – Beth and Cheryl want to go back to the dealers who were selling $2 and $5 manga as well as the art books and sellers of Japanese merchandise. Last year Beth found some great gifts that she sent out over the course of the year – items (clothing, stationery, etc) with Boots the cat were really popular.

If you would like to help out, please let me know at linda.mcclung at shaw.ca or use the donate button to the right. If you are planning to join us at Sakuracon, could you email me as well so I can keep track so we make sure we don’t miss anyone?

Cheers