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.


Kate J said...

Hi Linda, sorry to hear things are so tight financially, as if you didn't already have enough to worry about with Beth's health. I'm out of work myself right now, so can't offer a lot, but I went on the wishlist and ordered you a pac of the florestor tablets. Not a lot, I know, but hope it helps a little.
Love & peace

nicole said...

Darning knit socks:

I hope that helped. Money is tight here, too. I found a job about a month ago, cleaning at a supermarket. Can you try to get a really crap job to tide you over, like doing nightfill or cleaning at grocery shops? You can still job hunt while working a few hours a week...

nicole (email is url, replace .at.)

Raccoon said...

I'll do what I can.

I'll talk to you about it off blog, though.

Vanessa said...

I have been saving up money for a Christmas care package for both of you. I'm curious to know if she also needs low dose asprin, B-12, multivitamins, etc as well? She also said something about food condiments?

Also, I don't know if you can or want to do this but putting some of the items on her wishlist, that can be put on there, helps us figure out what she needs. Especially for someone with bad memory like me. Having dosing information and brand preference makes it easier even if we buy from a different source. Also if I'm having a bad day, medically, it's so much easier to click a few items to buy and send them to the checkout.

I wish I was feeling better lately to do more. You guys are in my thoughts and prayers though. If there is anything else we can do please let me know. {{{Hugs}}}

Bonnie said...

I have a flexible spending account that allows me to use pretax money for OTC meds, co-pays, ect. I can't use it for someone else's co-pays, but what I CAN do is buy OTC meds from it.

Are there any OTC meds that you guys need? I know at one point Linda was taking baby aspirin.

Sadly, batteries and vitamins or supplements are NOT covered. Nor is Florastor: I tried that already.

But do let me know if there is something OTC that you could use, even if it's extra tylenol or gauze pads or something like that.

Nancy said...

Thanks for letting us know what you guys need! Is there any way to order through Amazon for things like the Florastor and ear plugs?

Linda McClung said...

Kate: Thanks for the florastor tablets, it will really help. Amazon has the cheapest prices that I've found. I hope you find some work soon.

Nicole: Thanks for the links for darning socks. I've never knitted a stitch in my life, but it looks pretty straightforward. I'll have to see about getting some yarn and a needle.

Raccoon: It was great chatting with you last night. Thanks for all the help and support you continue to give - both emotional and fiscal.

Vanessa: A care package would be lovely. I've got all the low dose aspirin and B12 we'll ever need. Also have quite a bit of the Fish Oil pills too. Vitamin D3 is something we also use and we could use more of it. Beth takes 3000 IU's a day. If you are thinking of getting them, please get as small a pill as possible.

Some of the items are already on the wishlist, but I will add some more with dosage info. I don't know how big the Vitamin D3 tablets are that I added to the wishlist. It's not a brand that is familiar to me.

Beth had mentioned condiments - I think she's referring to olives and pickles which we go through a lot of. If this is something someone wants to purchase, probably the most cost-effective thing to do is to send me the cash through a donation or purchase a Safeway gift card. If it's a US giftcard, I can stock up at the Safeway in Port Angeles the next time I go down.

Bonnie: Flexible Savings Accounts - I never thought about that one. Could you see if you can purchase emla topical anesthetic cream? I usually get the 30g tube but it also comes in smaller tubes. It's 2.5% lidocaine and 2.5% prilocaine. I've got some of the small tubes listed on Amazon, but the larger tubes are much more cost effective. We go through a large tube every 2-3 months.

Another item the FSA might cover are oxygen canulas for Beth's oxygen concentrator. They are generic canulas, but if you need more info, let me know. She is WAY overdue for getting new ones. They are supposed to be changed every month, but I think the one we have now has been used for 5 months.

Something else that might be useful are some OTC meds for colds or flus. Mine have all expired and I'd like some on hand in case one of us gets sick.

What else - medical paper tape, reuseable cold packs, and disposable cold packs (best deal is on ebay!)

Nancy: Yup, the items are on the Amazon wishlist. But for things like ear plugs, you might want to buy locally so you don't pay $4 shipping for each package you buy on Amazon.

Linda McClung said...

Bonnie: Just thought of something else... a set of built up cutlery (the straight ones not bended ones). Beth has been using the same knife, fork and spoon every day for the last three+ years and they are wearing out. This might be covered by your FSA.

deadrose said...

Linda: Hurrah, I can finally do something useful for you guys! I know how to darn socks!

This is necessary when one's sweetie likes expensive toe socks :D

If you want to send some down, I'll grab my wool and darn them up for you and send them right back - I also have some pocky to send Beth.

Linda McClung said...

Deadrose: Awesome!! I'll send them over. I think it's just one or two pair.

Defying Gravity said...

Hi, I'm sorry I haven't been in touch for the last while. I've made a small donation through paypal though.

deadrose said...

Thanks, Linda! What colours are they, so I can be prepared?

Bonnie said...

Ok, I checked: EMLA cream is prescription only here in the US. It looks like I can buy oxygen cannulas: they come in 7" and 4", does that matter?

Cold meds, I can definitely do. What do you need or prefer?

Dunno about cold packs - the FSA may or may cover them (the rules can be funny). I do think paper tape is covered though.

I'll be in touch - I'm getting funds on Thursday adn that will be after finals, so I hope to send you something out.

What would be a good gift type item for Beth? And for that matter, is there something frivolous YOU would like for Christmas?

I know you're short on funds and luxuries are long gone - is there any kind of toiletry/body cream/soap/such like that either of you like? I believe Beth mentioned Satsuma but I don't know what that is.

The Untoward Lady said...

If Beth just needs the estrogen from the birth control pill it might be more economical to use estradiol valerate injections. I'm trans and I take 40mg every other week and a 10 dose vial plus needles costs me about 45 bucks from a compounding pharmacy and my dose is quite high, a lot higher than you would get from a typical birth control dosing.

That drug replaced 4mg/day 17-beta estradiol tablets which I dissolved under my tongue which cost significantly more (but it's been a while so I forgot the exact cost but it cut my expenditures more than in half).

I don't know if estradiol valerate would be appropriate for Beth but if she doesn't need the progesterone from the combined pill switching could potentially save you a substantial amount of money.

I hope this helps a little bit, I'm having difficulty figuring out ways to help increase your resources so trying to help you think of ways to cut expenditures was the least I could think of...

Bonnie said...

What kind of cough/cold meds? We just found out we HAVE to use up our FSA, and I know that OTCs are covered for sure.

I'll investigate the other Thursday or Friday, but do let me know about OTC meds.

Linda McClung said...

Kate: the Florastar arrived. Thank you.

Deadrose: the pair I'm thinking about is a kind of royal blue.

Bonnie: Cough and cold medicine - I'm not sure of the brands you have in the US. Do you have tylenol cough/cold - they have two types one for day and one for night. Both would be great. Also, I've heard oil of oregano is great but I've never tried it and I doubt it would be covered.

Do you think antifungal cream might be covered? We could use a tube - I got one from Walmart called Equate which is clotrimazole cream. Something like that would be great.

Also, if you still have some FSA money left, how about Depends or incontinence pads? Beth doesn't need them yet, but it would be wise to have a pack on hand. She'd need a size large.

For little luxuries - we've got plenty of soap and face cream. What we could use is: Avenda Hand Relief cream (for me) and Joico shampoo and conditioner. I use the Joico everyday use (silver bottle) and am all out, Beth uses the thickening shampoo (green top) and we both use the Silk conditioner for thin hair(Bronze bottle and top). We've got a fair amount of conditioner, but not much in the way of shampoo. In Canada you can usually just get Joico at a hair salon. Not sure about in the states.

Other luxuries - an XL and extra long hoodie for Beth in black or something really cool like skulls. A womens XL or mens L sweatshirt for me - in black, burgundy/red or dark blue or dark green.

Defying gravity: Great to hear from you again and thank you!

Th Untoward Lady: Sound like it would work except for the fact that Beth is a severe needle phobic. Pills are the way to go.

Bonnie said...

Antifungal cream, most definitely. Are we talking for feet or for, um, lady parts? I can definitely send some tylenol cold formulation your way, and will look for the shampoo. I don't recognize it, though, but I will look.
I will be shopping this weekend. Anything else from the pharmacy aisle? Tums, pepto, immodium, neosporin?

Bonnie said...

Shoot! I meant to ask for more info on the cannulas. I'm not sure what exactly to order.

Linda McClung said...

Bonnie: Cream for the feet please. Also, with the cannula - we use the 7ft tubing with a soft nasal tip.

Other over the counter items - gravol (non-drowsy if possible), tylenol extra strength eztabs (the small round pills), latex gloves (Large size), neosporin, various bandages, and a tensor bandage wrap. Can't think of anything else. Hopefully some will be on your eligible list.

Cereus Sphinx said...


My mom is knitting socks! So sorry to inject some randomness into the discussion, but:

A. - How big around are Beth's feet at the widest? (circumference - wrap the tape measure around)

B. - What's the distance between the front of her ankle and the base of her big toe?

Also how's the $$$ for meds? Oh wait, stupid question, I'll see what I can do (might be only a little).

I also have a lot of gloves here, I got a *whole box* them when I was taking Organic Chemistry for *ahem* extra-curricular activities. I'll see if they're large or medium.

I hope you're hangin' in there.

PS - Has your e-mail changed?


Linda McClung said...

Hi Susan,

Measurements are:
13" circumference
7.5" distance from front of ankle to tip if big toe. Had you wanted me to measure from front of ankle, over the top of the big toe and down to the base of the toe?

Email is still the same: linda.mcclung at