New caregiver whos overwhelmed

Hi and welcome. You've come to the right place. I too am a caregiver and it is beyond a doubt the hardest thing I've ever done. I had to see my PC to get medication to calm me down. I literally could not stop crying. Hang in there and feel free to pm me anytime. 

Please don't think your feelings are wrong. Both your lives have been turned upside down and it's hard to stay positive 24/7 while caring for your loved one. It's a very scary scenario. I really don't think I would be able to do it with out this forum. It's so comforting to read advice and survival stories. We can do this!  

There are many there who can relate, Nana. You are sure to find good help here, too.

I was DX in March of 2012 with stage IV-a base of tongue cancer and my wife was my caregiver, and she, like you, was often overwhelmed with caring for me, and the fear that she would lose me.  One of the things I'd wished she would have done is confided in me about her worries.  She kept it all in and never shared it with me, instead I saw it come out in her behavior. 

At first she was an over the top, attentive and caring person, doing so many things for me that at time it became uncomfortable to me.  I was perfectly able to do things for myself but she insisted on doing everything.  I understood it and was then and am now grateful for her care, but I saw the toll it was taking on her and how her frustrations, worries and anxiety came out.  

She would not talk to me about the disease, what it was doing to her, how it was impacting her and how she could deal with it.  We always talk but on this she remained virtually silent, and I found out later that she didn't want to burden me with any of her worries, thinking that I had enough on my plate to deal with during treatiments. 

She could not have been more wrong.  I was more worried about her than I was about myself.  I knew I was going to be fine, I understood well that i would feel very ill and have pain and life-long consequences but in the end I knew that I would recover - and I have. 

I saw the toll it took on her and was never able to get her to open up and share her feelings which - I think - would have gone a long way to alleviating her worries about me.

So my advice to you - talk to your significant other, share your feelings with them as they do with you, you'd be surprised at how much they worry about you, just like you worry about them.

You can consult with the oncologists as well, most offices do have resources for caregivers, and of course, we'll always be here to lean on!

My wife had a terrible time taking care of me because there was nothing she could do to ease my pain.  Everytime she asked me if I needed anything I would wave her off and just sit as still as possible.  That drove her nuts.  With me being the cook, cleaner, shopper, errand runner, etc., she wasn't prepared to take on any of my roles.  The day after a very painful surgery I took her to work and made her dinner.

Between the two of us, I think she had the worst part of it.  Feeling helpless to do anything.  Very frustrating.

Hang in there and just know that the end will come soon enough.  Take it one day at a time as they say.

Tom

My husband has SCC - he has not started chemo yet - had his cancerous tonsils removed - had the chemo port put in on the 9th of this month - after appointments with speech and swallow, nutrition he will begin the chemo - after chemo there will be another PET scan, then the determination on whether they will remove the lymph node then do radiation / chemo - or go straight to radiaiton / chemo.  the feeding tube is going to be implanted before the radiation begins.  We have a "chemo teach" appointment this wednesday and that is when we will find out the chemo schedule, side effects, and how I can care for my husband during chemo.  all I know now is that it will be a three agent chemo treatment for nine weeks.  My husband is age 52 and strong - today he did the mowing and weed whacking of the yard, he is still cooking dinner, shopping, taking out the trash, etc.  I have my own home daycare (so thankfully I am home during the day), but I know as time goes on, he will be able to do less and less - of the outside work.  I have RA - so these things will be very hard for me to do.  We have an adult daughter and two little grandchildren.  My husband believes that he will be undergoing radiation and chemo and still be able to mow the yard, shovel the snow this winter, etc etc etc....he wont even look for someone to mow the lawn!  As much as I tell him what I am reading about chemo and radiation and what he hears from the oncologists and surgeon - he still believes he wont have any trouble doing these things - besides driving himself to radiation, etc.  I am not able to stop working - we have a mortgage on our house, etc....my husband was disabled by spinal stenosis four years ago so he is already on disability - he is not supposed to mow the lawn, etc - but does it, then suffers from terrible back and neck pain for days.  My husband thinks he wont need me to do anything for him, etc - that he will be able to take excellent care of himself all thru this.  I do tell him he is the strongest person I know, we have an excellent marriage - but  -- really - he is not going to be able to shovel three feet after a storm up here in New England this winter - even with our snowblower !  

So I worry he will become angry with himself that he wont be able to take care of himself.  He does not want to meet with the speech and swallow person or the nutrition person this month - but I am "forcing" him to.  He has to go to these appointments before the chemo starts.  

I have told him if he gets too sick from chemo and has side effects, etc that I will take excellent care of him....of course I have not figured out how I will do that with working with five little children all day long in daycare....ten hours a day - I will have the nap time to do things for my husband....I am worried when he becomes very sick from chemo and radiation, how I will manage to take care of him - I am just thinking that he will be very very sick from chemo, I guess I am trying to prepare for the worst side effects (?).  I very much want to take care of my husband, Paul....but not sure how I will manage if there is a lot of hands on things during the day with his care.....

How have you caregivers managed during the day -- stopped working?, or was the care very manageable during the day?  a downstairs bedroom (we dont have that)?..

ellen.

the_wife said:

Overwhelmed? YES!

My hubby went through treatment last year and it was truly the hardest thing I've ever done. And I've done some hard things in my life, believe me!! This is not something that can be be done easily or quickly. Everyone is so different in so many ways and some have it easier than others, but that wasn't the case with us. The chemo hit my hubby hard right from the very first treatment. I can tell you in all honesty that I was exhausted right from the start. We lived at the Hope Lodge for several weeks so that we could be close to his clinic. It was nice to have free housing and be with other survivors, but it was very stressful being away from home.

He was very much affected by the chemo and all the drugs he took to combat the side effects. When I think back on what I did as a caregiver, well...it's really hard to describe. Quite simply, for me it was the most horrid experience ever. It can take away your strength and sanity if you let it, so the key is not to let it. As Barbara said - be sure to take care of yourself....easier said than done.

My hubby was very stubborn and demanding. Was it the chemo? I don't know. At the time I wondered if the drugs were affecting his brain. His behavior changed dramatically and some of the things he said and did made it very difficult for me. I took care of him despite everything. At one point he was hospitalized and part of me was actually relieved because it finally gave me a chance to rest! A whole staff of nurses took over my job and it was a reprieve. I wasn't working at the time so I was his full time caregiver throughout and then some. The recovery from this can be very slow.

Somehow we made it through and he is doing very well, although I admit my health suffered from the experience. So...I'm here to tell you to be very attentive to your own self-care.

Come to the site often as others here will help hold your hand. Stay in touch with his doctors and let them know what's going on with him and yourself, too. I think the clinics should do more to help caregivers and loved ones get through this. As a few folks have said in this thread...they believe it was harder on the caregiver than the patient. That is so true. You can see it on the faces of those in the waiting rooms, although they are good at hiding it. They are the brave souls, the soldiers standing their ground no matter what. I say put down the flag and take a break. Ask for help. Go out for lunch. Enjoy an afternoon off or do something you enjoy. This is hard stuff.

I wish you all the best!

Hugs!

wow - it sounds like you had a hard journey... We went to the chemo teach appointment - chemo starts this week on thursday - which is my husband's birthday - he will be 52.  It is three chemo drugs, I dont have it in front of me, but one is Cisplatin and one that starts with a D, and then the FU drug which is a five day home treatment one - a box like thing will be attached to my husband with his chemo port for five days.  His treatments are for nine weeks, every 21 days.  He will be given two meds for nausea, and also have an IV for nausea, a med for his kidneys and a med for swelling all on the same day as the chemo - they said the chemo is four hours, the other meds are one hour - our first appointment is booked for seven hours.  He has the two meds as pills for nausea for at home.  He will lose his hair at about week two - my husband decided to have his head shaved next week before it will fall out.  Tomorrow it is a trip to walmart to buy hats and bandanas for him.  We were given pages of side effects that can happen and what to watch our for.  My husband still thinks he will be fine....without any side effects.  I totally believe he is going to beat this cancer, but I do think he will be ill from the chemo, side effects.  

I am really going to try to have some time so I can just lay down and rest while he is going thru this - every day.  Sadly, there is no one I can ask for help of.  My husbands family lives across the country, and I have no extended family.  I only have my daughter and two grandchildren...my grandchildren are very young - and my daughter,,,,,well - lets just say she does very little in this house, no matter how much I ask....it is a situation where my husband and I will do anything to make sure our grandchildren have a home, are cared for - there is no way around that.  So almost all the burden for the housework is on my shoulders (and we have a nine room home - big house)....my husband has always helped, but lately he is becoming more tired -- which I think is because of the cancer, so he is doing all the outside work and is beat when he comes inside.  I have always been a pretty shy person, so I really only have a couple of friends who have their own "plates" full.  

I actually wish I could afford to have someone to come in once a week to deep clean my kitchen and bathroom - that would really help me.  

I am sure there are lots of people who have to do all the caregiving and take care of their homes alone.  I will just do the best I can each day and really try to set aside some time to just lay down.  I am young - only 53, but do have RA which can make a lot of things hard to do - for instance, I can not open a cap from a water bottle.  

ellen

As a patient, I am forever thankful for the help I recieved from family during this time, regardless of the fact that I was probably quite difficult at times. Its not the now we are working toward, its the then. Most likely, words cant describe what you are feeling, but, you are not alone. There was a care givers meeting some of my family attended that seemed to help them cope with the situation. Perhaps you could check to see if your clinic or a near by facility offers something similar. It really helped my family understand hearing from other care givers. God bless.

much love,

-PC