cancer without a caregiver?

[done]

I was just reading Lara's post about being a caregiver. I'm so impressed by all the caregivers who post on this forum. But then, as a single person, I feel like I am living in some alternate cancer universe. I do have a good group of friends who step in and help when needed (and I have learned it is a gift for them as well as me to let them); that, however, is short-term and only when the need is fairly extreme.

So first: bless the caregivers!

And second, how many of you go it pretty much alone like I do? And how do you make it work?

Just wondering...

[janklo]

You know Theresa, my daughter is like you, lives alone, no caregiver. We live 10 hours away. When she was first diagnosed, she was living with a boyfriend, but he traveled for work 90% of the time, so he wasn't really any help. He couldn't handle cancer, so he was soon out of the picture. So now she gets by with help from friends.

We try to go visit her several times a year and each time we stock her up with food from Costco - we buy chicken breasts and cook them and put them in single serving bags in her freezer and also get muffins and bread and put in single serve bags along with other stuff like tp, paper towels, laundry soap. Then when she's really not feeling well, she can grab something from the freezer. She lives in a condo so when we go, her dad takes care of all her little maintenance issues like changing lightbulbs and fixing things so that's one less worry.

Other than that, she relies upon friends and neighbors to drive her to procedures or the emergency room when needed. Or to get her food or prescriptions. It's not ideal but she lives her life the way she wants it.

[don't look backwards]

I live alone but do have a friend who has taken me to the hospital and picked me up when needed. I get transfusion twice a month and hasn't been a problem for me getting there or back or going in for blood work. So far I have managed with out too much else going on. I wish I could work but chemo lays me out. I get maybe 5 1/2 way decent days out of the two weeks. I do my errands and house work on my good days and the rest of the time I work on my art or watch tv or sleep and of course hanging in the water closet.

[Nickmark59]

My friend in Erie who had stage IV breast cancer got thru it on her own with help from friends stopping in to help and take to appointments and she still lives on her own 12 years out I call and check on her as do friends . She is very independent wish I could get up to see her more often than couple times a year

[Ashlee H.]

I also do not have an "in-house" caregiver. But my friends, neighbors, and co-workers have been awesome. I just have to contact one person if I have a need, and they find someone to handle it for me. My team has been awesome. I do find it difficult to ask for help, but I've learned they truly do care about me and want to help in anyway I need. I probably don't take advantage it as much as I could, but sometimes it's just nice to know I have options.

[done]

Janklo, how difficult it must be for you to be far from your daughter, but how thoughtful to do the things you do for her when you are there.
Nickmark, your visits to your friend probably support her in ways you can't even know.
Dontlookbackwards, glad you take as good care of yourself as you can and don't push yourself too hard.
Ashlee, you must be incredible. Good people receive good things, like your great support network.
Thank you all.
I love the words of Ram Dass, "We are all just walking each other home."

[Amy14760]

I live in Germany with my 2 kids ages 12 and 15. I thought I could go it alone but discovered during radiochemotherapy that I needed help. My brother had to fly over at last minute to stay with my kids while I spent the final 2.5 weeks of radiation in the hospital. I am hiring a live-in au pair as a result to help me work my way through chemo. I really admire the strength of all of you that make it on your own. The au pair is coming from Italy. I really hope chemo doesn't destroy my taste for lasagna ; )

[kac]

I live alone too. My sister, who was there for me a lot of the time at the beginning moved across the country, in fact she now lives in the US. I have a brother and friends in the city, but no one with me all the time. So far it has worked, but I do worry a bit about how things will be when I get worse.

I'll cross that bridge when I come to it I guess. My sister says that she will come out and be with me wen it starts to get bad.

I also know of a woman who lives with her mother and is the primary care giver to her mom, even though she has to deal with her own cancer. She has been doing this for 3 years now.

[jacekica]

I am alone, all my family memebers (parents, sister) and close friends died 14 years ago in short period of time - so like Ashleey i can only say that God do wonderful thiongs through people - coworkers, neighbpurs..... i was also happy enough to be stage I and also I work in hospital in which I had surgery, have oncologist...... if this realy nasty illness come back i don't know how it will be so I truly hope and believe that God will not put me in that position.

[Lara239]

I have been wanting to answer this thread all day long but have been so busy "caregiving" that I have not had time....I am doing all the household chores that I normally do plus my husbands (actually mowed the grass today, lol!).
Obviously I am a caregiver but I had my inlaws decend on me for almost a month and they certaintly settled in expecting me to do all cooking/cleaning/grocery shopping...everything . They are from overseas and are VERY helpless over here in the USA so suddenly it was like I was the caregiver for not just my husband, but them as well. I finally just asked for help from all family and friends for a lot of things. I asked them to take my husband to the doctor several times when I needed to work, asked my Dad to mow my grass several times, I set up a meal delivery schedule (as a suggestion from another friend I have here in Tennessee with colon cancer) so that I could have meals delivered here. It worked wonderfully and I did not have to worry about cooking dinners for 3 entire weeks. I have also just recently asked to extend this schedule a few more weeks because I am so overwhelmed with trying to get caught up with work (i am selfemployed and make NO money unless I work and I have been basically ignoring my clients for a month now). I am also not a good cook...my husband has always been the cook around here and he is just not up to it obviously. This is the website I used and it is very easy to set up a meal schedule:
takethemameal.com

I sent out an email to my family and friends asking for help with meals and they all responded. It was WONDERFUL!
I suggest if your single with no caregiver you could ask for meals to be delivered every other day as you could eat one meal for two days. It would save you the hassle of shopping/cooking when your too tired and nutritious meals are so important in recovery.

I hope you get the help you need. If you need any advice please feel free to PM me.

[Ashlee H.]

I've been both a caregiver to someone dying of cancer (while working full-time) and now a cancer patient myself. Being the caregiver was harder. As a caregiver, I wasn't the one with cancer, yet cancer became part of my daily life. Decisions were based around the cancer. I found great neighbors to help out when I was at work. My friend had stomach cancer, so food wasn't an issue since her stomach was removed and she had a tube for her nutrition. As a caregiver, I had my friend write out a list of things she needed. When anyone asked, "What can I do?" I showed them the list and asked if they could do something on the list. As a patient, I have also kept a list.
It is so important to try and keep good communication between patient and caregiver. As a caregiver I was always so concerned with saying the wrong thing. As a patient, I am always so concerned with saying the wrong thing. I want people to be honest with me and really hear what I am saying.
In order to be a good caregiver, you need to learn your limits and not feel like you have to do it all. There are a lot of resources out there. I think because I have been a caregiver is the reason I'm so hesitate to ask for help. So, I try to spread out my caregivers. That is what is great about my team. If I need a ride - I make one call to the main person, and whoever can do it, they volunteer. There is nothing worse than having friends say, 'Let me know what I can do - just call me", and when you do, they hem and haw and say they aren't available.
I guess if you have a family, having meals delivered is great. I've supplied meals to friends in the past when they were going through medical issues. But, when you are single - it's a different thing. At the beginning I've had friends drop off food I just couldn't eat while on chemo/after surgery/etc. I'd thank them and then throw the food away. One friend would go to the dollar store and get me a bag full of crap there is no way I could eat - it was just a waste of money. As time when on, they got the message that gift cards would be appreciated more than food. That way I could get exactly what I could really enjoy and could eat.

[done]

Great idea about the gift cards for food, Ashlee!

[jacekica]

Yes, gift cards are nice, because people in best intenstions come with food you can not eat - to heavy, to greasy, meaty, veggie, whole grains.....
Here the problem is that there is no meal delivery - it is but to expansive and very low quality.
But all you have suggested is wonderful for you in USA, hope you are aware where and how you live we can only dream about health care and everyday's stuff you take for normal life.

[Lara239]

The gift cards are a good idea however the website I posted: takethemameal.com is VERY helpful because you can set up dietary restrictions and an actual delivery schedule for people (other people can see what each other is bringing so you dont end up with 3 batches of lasagna or something like that). A friend of mine here (I seem to know a lot of people here locally in Tennessee with colon cancer) has used that site all the way through all her chemo treatments. She had no energy to shop/cook and she would post her dietary needs/cravings so people knew exactly what to make her, this helped with them not bringing the wrong thing. She also just had meals delivered every other day or sometimes every few days so it was not too much food for her and would freeze what she did not eat so she could have it later. She told me yesterday at church that it has worked awesome for her. She is stage IV colon cancer and is doing great so far with her treatments.

[RixInPhx]

Since Dx 26 months ago, I have been going it alone, living in a couple rooms provided by a freind who is on temporary duty out of town.
I've been able to keep up with errands, simple meals, housekeeping, and yardwork fairly well.
A sister in Phoenix has always been available to help with errands and put me up overnight when I changed chemo regimens, in case I had a bad reaction.

I spent all last week in the hospital (see other thread) trying to resolve the digestion issue, and sis and neighbors were champs taking care of my dogs.

But circumstances have changed.
The lack of nutrition has left me weaker and more fatigued than ever, to the point I can no longer live alone.
My sister from northern AZ has come to town for a few days to help me relocate into 'mother-in-law' setup at the house of my Phoenix sister.
I've previously been reluctant to intrude into her family life, but now I just don't have a choice.

If you are an independent type, then you can get along OK 'alone' depending on the severity of side-effects and assistance of friends and family.

BOL, Rick