Wednesday, December 8, 2010

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.