Thursday, November 10, 2011

VOICES

I don't remember my mama's voice. That doesn't sound like much of a big deal, does it...but I can't just pick up the phone and call her; she's been gone now for quite some time. I have a little teeny tiny bottle of her perfume, and when life gets just crazy awful, I take it out and just take a sniff. She didn't wear it often, as it was quite expensive and came from Germany. She used it sparingly, only when she went out on rare occasions with my dad. I have some photos, of course, and she's always the one who looks like Laura Petrie (google that, young ones). But I don't have her voice anywhere, on anything. We didn't own a video camera or movie recorder at that time, so nada.

The now constant stream of emails, phone calls and various other communications I receive from people saying 'I have a sick friend, what can I do to help?' now includes a little paragraph that says RECORD THEM. Yes, they will probably get better, but do it anyway. I recorded myself singing for my children, all the songs I usually do a bedtime. Well, I still kicking around here, but let me tell you, those little cds get a lot of play. When I travel, my kids use them to go to sleep.

There are gobs of things you can do to help someone in treatment. But please keep this in mind: treatment isn't just chemo infusion. Patients struggle for YEARS afterwards, physically, financially (!!) and emotionally - they could use this help at any time!!

Here's my hand-dandy-go-to list for helping any kind of illness, but it's been specifically tailored for breast cancer. Please let me know what you think!

CAREGIVER SUGGESTIONS

Mastectomy aftercare:

· Button-front pajamas, long sleeved (she will be sitting up in bed quite a bit, so will need to stay warm on top. Won’t be able to lift her hands, so pulling on a shirt over her head isn’t an option.)

· Tall, reusable thermal cups with lid and straw (again, lifting hands to any degree will be difficult initially. This will make sipping drinks a bit easier)

· Serving tray (to sit beside her on the bed and hold remote, cup, glasses, phone, etc)

· Pashmina or light sweater (one size larger then she would normally wear)

· New movies for her to watch – make them funny! She’s got plenty of serious stuff going on, she doesn’t need to see it on her television.

· Childcare. She will be out of commission for anywhere from a few days to a few weeks. If you have a group of people helping with little ones, make sure she has a detailed copy of the schedule and what you have planned. Have it printed and right beside her in bed so she always knows everything (i.e., Mary Smilth taking kids to the movies at 4:30, then out for pizza. Will return home by 7:30). Needless to say, these should only be people she trusts implicitly and that they get pre-approval for all activities. Dietary restrictions for the children, movies that might be too scary, things at the zoo that she would prefer they not do, etc all should be discussed while creating the schedule. Mealtrain.com and carecalendar.com

· Animal care. Don’t forget her pets, if she has any. Cats and dogs (especially dogs, of course J ) might have a very strong reaction to a member of their family being so ill. Make sure that the same kind of schedule as suggested for the kiddos is maintained and available for her to see. If the pets are quite young, they might be tempted to jump up on the bed with her and that just can’t happen. If a little sleepover time with a dear friend is required, then so be it. Just as long as they are cared for with love, she will be happy.

Chemotherapy/Radiation care:

· Warm, tight fitting (soft!!!) knit cap. Being bald at night makes you more cold than you can possible imagine. She will need to cover up that noggin to make sure she stays toasty.

· Silk scarves, or hats - pretty. Bald is hard. Help her out.

· Thick, warm socks, pashmina, sweaters, etc. Chemo makes you cold, too, so this will help her not only during infusion but for the rides to and from. Does she have good winter boots, if applicable? She will be moving slowly and getting in and out of the cancer center might take more time, so make sure she has proper gear for snow, rain, etc.

· Unscented lip balm and lotion. These treatments are very harsh and drying , but she wont be able to tolerate heavily scented items. Unscented is best!

· Tote bag. She will be given so many items every time she visits the center and for check-ups, this is quite important.

· Journal. Not for her thoughts, but for practical reasons. Have her write out ALL questions she has for the doc, and then leave room for the answers. Memory will be a slippery commodity during chemo, so this will be a great reference point. Have her use the first for pages for her specific diagnosis, treatment plan, doctors info (including emergency number), etc. This will be a handy guide for anyone lending her a hand as well – a pick up and go reference with all you need to know.

· Emergency card. Her specific diagnosis, doctors info and all medication she is on, including infusions, should be listed on a small card. Have 2 copies laminated, one to carry with her always and one to have taped to the dash or window of her car. If she is in an accident, this will be helpful for the medical staff assisting her at the site.

· Meals for her family, child and pet care. See Mastectomy post care. Mealtrain.com and carecalendar.com are free resources to help get it all straight!

· Housekeeper. For the DURATION of her treatment and, by golly, maybe a year afterwards. She might say no, but force it. She will be exhausted and will have to spend more time than usual just doing chores.

· Powder room in her house – how does it look? I know it seems like an odd question, but she very well might be spending many hours in there during the rough parts of treatments. If it needs to be spruced/repaired/updated, see if your group of friends and handymen can help out with that. A nice teak seat for the shower is a blessing that she doesn’t even know she’ll need!

· Tell your community what’s going on, and think about her needs. This might be a financial devastation for her and her family; so look at what might help. Does she need a new washer, dryer, vacuum cleaner, oil changed in her car, new tires, coats for the kids? Talk to your local stores and ask if they will help donate or give a discount. Throw a fundraiser dinner for her bills, local churches should be willing to lend you their locations and perhaps even more. Auction items would be great, but ask them for 2 of each, one for the patient and one for the auction.

· RECORD HER/HIS VOICE. This is kind of crucial; odds are in their favor that they will recover and live a long, fun life. In the event that this is not the case, however, think about the people that are cancers ‘leftovers’. The ones who wake up everyday and wish they could just hear their voices one more time. Record them, video preferred, reading a book to their kids. Singing their favorite song. Telling their favorite joke – just being totally silly. It might help everyone!

3 comments:

  1. This is a really helpful list. I often find my specificity about my needs to be off-putting to people, which has made it difficult to trust asking for help. It's a delicate balance--knowing you need help and asking for it, and then dealing with it when people don't give you what you ask for, or worse, don't give anything because your request wasn't to their liking. I asked for help from friends, twice a week, to help me by coming over and just picking up. I have four daughters 12 and under, treatments once a week, lymphedema, etc. etc. The response I got was, "Well, why don't you get those girls involved and have them do it?" They didn't understand that that level of management--household management, can often be just as exhausting as cleaning house. We all know it's difficult to keep a family household organized and running smoothly. Give these women a break, and don't judge their requests. Thanks, Heidi.

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  2. Thank you Heidi, this is incredibly helpful.

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  3. Please send anyone going through cancer treatment...or their friends to my website, www.BreastCancerFreebies.com where they will find links to request all sorts of wonderful freebies to help them along the way, including FREE hats, scarves,retreats, magazines, make-up, exercise classes, housecleaning, support groups and so much more. I hope this helps!

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