Who needs a caregiver?

[Laura Ann]

The topic of caregivers has come up on this board. I, as a caregiver and health care advocate for my mother feel compelled to respond.

While it is very true that some who are suffering with cancer are fine dealing with their illness alone, I don't believe that is true for all. There are certain conditions in which a caregiver/health care advocate is much needed. I think the patients age and stage at diagnosis has a lot to do with whether or not they can handle the disease without assistance. Also if the patient is very passive and uniformed regarding medical issues it is helpful to have an advocate on their side.

Since my experience involves the care of my mother I will use her to cite a few of the many examples of why I believe one with advanced stage cancer needs help.

First of all my mother age sixty five was diagnosed with stage 3b inoperable non-small cell Adenocarcinoma. My mother has always felt intimidated by Doctors. She has never been assertive about her health care management. The first Radiation Oncologist she met with assured her that she would not be able to complete therapy(for lack of being able to eat) unless she had a feeding tube installed. She would have went along with this had I not stepped in at that point and convinced her to get a second opinion. She switched doctors and ten months later no feeding tube, no unnecessary surgery. My mother is able to eat three meals a day ,which I gladly prepare for her. I remember reading somewhere that many lung cancer victims die from malnutrition before the disease actually kills them. If it were up to my mother to shop for groceries and prepare meals she could not possibly do so.

Before my mother changed doctors( she also got a new Oncologists) she tried calling the Doc's office because she could not breathe at night, this was over the week-end. The doc did not return the call since my mother had an appointment on Monday I guess she didn't see the need. My mother, being the passive person she is(not wanting to bug a busy doctor) ended up in the hospital for four days with a quart and half of fluid on her lungs. This, again was before I stepped in to help. I have no problem calling and communicating my mothers needs to her docs and nurses. I'm always polite and patient and they seem to appreciate that I am there for my mother.

Part of what I do for my mother on a regular basis consists of accompanying her to every doctor/diagnostic visit. Taking notes, asking questions, discussing treatment. This allows me to explain later to her and the rest of the family what is going on and SHE can decide how to procede once she has a full understanding.

I keep up with moms meds, dosing , refilling, side effects etc.

I research her options(using this site and others) so I can keep her informed on her condition. We all know the doctors have limited time with the patient.

The other part, and I think most important , is the love and support that I offer my mother twenty four hours a day, seven days a week. I do the work so she does't have to. I know that my mothers time in this world is limited, I want to make every day count for her.

Please, please don't respond and say what I am doing for my mother is wonderful and I am a great daughter. It's not about me, it's about her. This is a blessing from God that I am in a position in my life that I can do this for her.

Laura

[betplace]

Laura,

It is wonderful that you are able to do this for your Mother! I think caregivers are such special people and even tho I don't have a specific one, I have people who I can call on if I feel the need of support. I think you will find most of us feel that caregivers are very neccessary and with out them most of us would be in much worse shape.

So yes you are a wonderful daughter and lucky that you are able to give your Mom such a needed gift, and I am sure your Mom feels the same!

Blessings

Betty

[Frank Lamb]

Laura,I am glad you are able to give your mom this much needed care.I think pretty much everyone with a serious disease such as cancer or others should have a care giver or at least another trusted person to advocate for them.No matter how competent or able one is it is very hard to hear,understand,comprehend,etc,all that is dished out to them.

I am fortunate that I can still fend for myself most of the time with everyday things while my wife ( caregiver ) works a full time job as a waitress.(hard work,heavy trays,& dealing w/people.)However when it's time to go to a drs. I would be completely lost without her.I don't hear well & lots of doctors here are of foreign descent and don't always speak very clear English.I sometimes don't have a clue what they said (even tho they are very good drs.).From my standpoint and opinion I feel EVERYONE should have an advocate & caregiver if at all possible.

[Snowflake]

Allow me to defend a comment I made in welcoming a newcomer that will not have a caregiver living with her directly...

WITH HELP*, ANYONE could do the legwork, etc. involved in the treatment of disease. HELP* would be someone giving them advice to tape doctors' visits so they wouldn't miss anything, telling them to write down questions so they are sure they remember them, calling groups in the area that offer transportation to and from treatments, have a neighbor or someone close to check in on them occassionally and help out if needed.

How wonderful, Laura, that you have the attitude of it being all about HER. My comment referred to the inevitable line of "look what cancer did to ME" given in earshot of the actual patient, where it is all about the caregiver.

I had two caregivers, my husband - whom I lived with, and my mother who spent four days a week with me so my husband felt secure in going to work. Let me assure you, my husband loves me dearly and only means well, but I was more worried about how he would take anything I said that I didn't say much. I did NOT tell him when I felt like crap, when I was afraid I wouldn't live a year, when I felt side effects were too much but thought he would think less of me were I to tell him that I wanted to stop - I had to wait to see my doctor and discuss side effects before I felt secure in quitting the trial I was in. In this way, a caregiver was NOT all that it could have been.

I came home from surgery in such pain, I couldn't take a deep breath without wincing. Seeing how that affected my husband, I internalized a lot of the pain. He took to heart my surgeon's suggestion that I not be allowed to stay in bed because depression could set in. Not once was I given a moment to dwell on what I was dealing with. I was not "allowed" to cry. I was, however, allowed to listen to all the bad things that would happen to him were I to die...

Anyone who is alone and wants to live will be able to do it alone. Assertiveness when you KNOW it is a life and death situation is easier to come by then trying to track down a clerk in a store. I can blow off bad customer service, I pin my doctor to the wall when I want an answer that he appears to be side-stepping.

There are suggestions here from many on how to do it "alone" - because even those that are "alone" are not alone if they come here for support. We are here to listen, to cheer, to cry and to give some advice on what we would have done to make it easier...

I believe receiving help is a battle for some. I didn't want to NEED any help. After surgery, I couldn't even wash myself in the shower - how humiliating is that? I had to put a chair in the shower to sit on and my husband or my mother helped by washing my hair and whatever else I couldn't reach with a right arm that wouldn't work - pretty much everything. "Potty time" was no picnic, either, but I fought the pain to keep that bit of modesty. Were it not for the drill sergeants barking out orders for me to be up and dressed, I would have spent the day comfortable, in my pajamas instead of wrestling into clothes that irritated my fresh scar...

I appreciate the help I had, but also wonder if I would have been further ahead to be on my own at least sometime, so I could work through my own feelings without having to worry about hurting someone else's.

I sure hope you all, as caregivers, can understand that. I did not mean to offend anyone with my statement, but to tell someone that it's only possible with lots and lots of help is pure BS. Some help is nice, but help that is hinged with guilt and judgment from someone else is not a positive. I spent a lot of energy keeping my negative thoughts and fears to myself. I shared with a few on this board when I first joined and I have since then, but still do not share at home. Family members will always respond with, "But you're going to be fine..." and that's the end of the conversation. So I pay someone to listen to me and have a few good email friends that I spout to. Just the way it is...

...and I don't think I would make a good full-time caregiver, either. I have plenty of empathy, but it puts me in a dark scary place that I'd rather not be.

Take care,

Becky

[Don Wood]

Well, each person's circumstances are different, so any statement on this would have exceptions. Having said that, I still believe strongly, from my own experience and those of others I know, that anyone with a serious illness needs a caregiver and advocate. This does not mean that the spouse or child or whoever automatically qualifies. If the assumed caregiver cannot put the patient first and focus on what the patient needs, then they really cannot function well as a caregiver. If those that function well in that capacity also need to take care of themselves. I don't think we can decide ahead of time whether we or someone can be a helpful caregiver until we're faced with the situation. I think we caregivers who have been able to succeed have a great reward in those we are blessed to serve. Don

[kimblanchard]

Don, I think you said it right. There is no one way that is right all the time. I know around here, my work is about like Laura Ann, and if I didn't do it, it wouldn't get done. I, too, feel that it is my duty and my privilage. My husband would do it for me, if I were the one who was tired and hurting and just couldn't deal with it right now. We are very much in this together. But I know there are all kinds of situations.

I would just throw out there, this is an unnecessary problem - we do not want to be divided. We want to all do as well as we can and to give and receive help as well as we can.

I am more a caregiver right now but believe me, plenty of people are caring for me, as well as my husband, and we both need that. It's tough on everybody. Remember the love.

Margaret