FOR ALL THE CAREGIVERS FEELING BLUE, STRESSED, OR MISUNDERSTOOD

Sandi1

tired2012 said:

Ok, I agree.....I'm done

Ok, I agree.....I'm done hearing if there's ANYTHING I can do!  Apparently, nobody can do anything except say "Oh my gosh!  That's so terrible!" and that's if they actually answer their phone!

And, I'm not beautiful and strong.  I'm just tired.

Having a husband who is dying didn't make me a saint.  It feels like it's killing me.

I could not

I could not have said it better.  I'm tired and i feel guilty if i even go outside and sit in our screen house for 5 minutes.

Sandi

 

Hussy

Sandi1 said:

Where is everyone?

I am wondering if anyone on this Caregiver discussion page lives in New Jersey.  I live on the Jersey Shore by Toms River.  It would be nice to know that there are other people close by to talk to and socialize with - people that really understand.

Sandi

 

Live in CT

Hi Sandi

I live in Connecticut.  I can totally relate to the work/home dichotomy you describe.  You have to be at work because you really really really need the money but that means you're not doing stuff that needs doing at home.  Every night when I drive home from work I start stressing about the approximately 8 million things I need to do when I get home.  Last night some well-meaning relatives stopped by "to help" -- one brought dinner (which my husband was too sick to eat and was something I don't like) and the other came to mow the lawn (but first I had to unlock the garage because she somehow locked it, show her how to use the mower and move all the lawn furniture!)  And the price tag for this helpfulness was that they hung around for hours (talking about his cancer in hushed mournful tones -- like I'm not aware of the direness of the situation already) and I had to entertain them when all I wanted to do was get on with all the chores that were awaiting me and then possibly, maybe, have 5 minutes of quiet time before getting a crappy night's sleep.  More "helpers" are scheduled to descend on us this weekend and I am dreading it.

Shelley 

soul-mate

Sandi1 said:

I could not

I could not have said it better.  I'm tired and i feel guilty if i even go outside and sit in our screen house for 5 minutes.

Sandi

 

NOT GUILTY

Sorry to hear about your situation may the sunshine go your way . Being caregiver for my wife under palliative care at home for the past year, I know exactly where you are coming from. Please take sometime for yourself without guilt, it's a matter of survival to be able to handle the difficult task at hand. You need to to rely on sister and take a break no matter how small. I am by myself and feel guilty leaving just for groceries. I go for five minute walk around block couple times a day and seems to help me handle my task. Just a suggestion but many are coping as survivors and caregivers by using the chatroom to communicate on the outside without leaving the house. There's a wonderful group that will greet you and may find it to be a good distraction. Hoping this helps Take Care

SOUL-MATE

Meowycat

Sandi1 said:

Where is everyone?

I am wondering if anyone on this Caregiver discussion page lives in New Jersey.  I live on the Jersey Shore by Toms River.  It would be nice to know that there are other people close by to talk to and socialize with - people that really understand.

Sandi

 

Hello

Hi Sandi and Shelley,

I live in Manhattan and my Dad and I are taking care of my mom since she is now on home hospice. The first week was super rough because we did not have a routine and everyone was coming by the house daily. We lucked out and got an aide for 3 hours a day 5 days a week so we can go out and do errands or take a walk. My father does not like leaving for more than an hour because he is in a continued cycle of worry. I to went through the anxiety of leaving for a few minutes and then feeling guilty. Not a pleasant feeling.

People mean well but they just don't get it i.e.: bringing food the patient can't consume and you dislike (classic) or coming to the home and you are feeding them .

HELP US CLEAN THE HOUSE AND TURN THE PATIENT SO THEY DONT GET BED SORES DANG IT.

I am physically exhausted and I am getting at least 6 to 7 hours of sleep at night I think mentally my mind does not shut down. My lower back is killing me from helping mom up and down. Dad seems to be in better shape physcially than me, but mentally i'm stronger (not by much).

Today i won tickets to a show. Lets see if i can go. I just need a good distraction for a couple of hours without having a panic attack.

I am here for you guys if you need to talk or vent.  It's better therapy than spending it on a therapist.

 

Huggies,

 

Nellie.

 

cindygodfrey2

Meowycat said:

Hello

Hi Sandi and Shelley,

I live in Manhattan and my Dad and I are taking care of my mom since she is now on home hospice. The first week was super rough because we did not have a routine and everyone was coming by the house daily. We lucked out and got an aide for 3 hours a day 5 days a week so we can go out and do errands or take a walk. My father does not like leaving for more than an hour because he is in a continued cycle of worry. I to went through the anxiety of leaving for a few minutes and then feeling guilty. Not a pleasant feeling.

People mean well but they just don't get it i.e.: bringing food the patient can't consume and you dislike (classic) or coming to the home and you are feeding them .

HELP US CLEAN THE HOUSE AND TURN THE PATIENT SO THEY DONT GET BED SORES DANG IT.

I am physically exhausted and I am getting at least 6 to 7 hours of sleep at night I think mentally my mind does not shut down. My lower back is killing me from helping mom up and down. Dad seems to be in better shape physcially than me, but mentally i'm stronger (not by much).

Today i won tickets to a show. Lets see if i can go. I just need a good distraction for a couple of hours without having a panic attack.

I am here for you guys if you need to talk or vent.  It's better therapy than spending it on a therapist.

 

Huggies,

 

Nellie.

 

me too

Hello all...I have been lurking on this site for about 2 years.  In 2012 I joined because my husband was diagnosed with kidney cancer and my 29 year old daughter was just diagnosed with cervical cancer in March this year.  About the time my husband really got to feeling better then i became a caregiver for my daughter.  She is feeling better now and finished her first round of treatment.  I have been the caregiver for my mother who lives with us as well since 2007.  She has Alzheimer's.  I am tired, guilty, anxious, depressed...........the hole 9 yards at one time or another.  Just wanted to introduce myself.....whine a little but mostly cheer you all on!  What a great job you do!

Hussy

cindygodfrey2 said:

me too

Hello all...I have been lurking on this site for about 2 years.  In 2012 I joined because my husband was diagnosed with kidney cancer and my 29 year old daughter was just diagnosed with cervical cancer in March this year.  About the time my husband really got to feeling better then i became a caregiver for my daughter.  She is feeling better now and finished her first round of treatment.  I have been the caregiver for my mother who lives with us as well since 2007.  She has Alzheimer's.  I am tired, guilty, anxious, depressed...........the hole 9 yards at one time or another.  Just wanted to introduce myself.....whine a little but mostly cheer you all on!  What a great job you do!

Kudos

Wow cindygodfrey2 -- you hit the trifecta of caregiving.  I'm at my wit's end as a caregiver for one; can't imagine caring for three.  You inspire me!

cindygodfrey2

Hussy said:

Kudos

Wow cindygodfrey2 -- you hit the trifecta of caregiving.  I'm at my wit's end as a caregiver for one; can't imagine caring for three.  You inspire me!

trifecta

I guess i have always been a caregiver.  I'm an RN (my calling) but it is so different taking care of loved ones.  The Alzheimer's and my mom is the hardest...you never know what to expect from day to day.  I take her to daycare because i work fulltime but it has been difficult during my daughters treatment.  I guess we all just keep pushing forward each day!  Have a great day!

Hussy

cindygodfrey2 said:

trifecta

I guess i have always been a caregiver.  I'm an RN (my calling) but it is so different taking care of loved ones.  The Alzheimer's and my mom is the hardest...you never know what to expect from day to day.  I take her to daycare because i work fulltime but it has been difficult during my daughters treatment.  I guess we all just keep pushing forward each day!  Have a great day!

Even More Impressed

You're an RN! So you're truly a caregiver 24/7.  I hope you are able to carve out some time for yourself each day, even if it's only a quick walk around the block or some "me" time over a good cup of joe. Does your daughter live with you as well?  I hear you about not knowing what to expect from day to day. I'm a bit of a control freak (ok, so I'm a total control freak) and adjusting to total unpredictability has been one of the most difficult things about this journey.  Rolling with the punches was never my forte but now it has by necessity become a way of life.

cindygodfrey2

Hussy said:

Even More Impressed

You're an RN! So you're truly a caregiver 24/7.  I hope you are able to carve out some time for yourself each day, even if it's only a quick walk around the block or some "me" time over a good cup of joe. Does your daughter live with you as well?  I hear you about not knowing what to expect from day to day. I'm a bit of a control freak (ok, so I'm a total control freak) and adjusting to total unpredictability has been one of the most difficult things about this journey.  Rolling with the punches was never my forte but now it has by necessity become a way of life.

trying

Hussy, i try to carve out time.....I've got that 'catholic guilt' working most of the time though.  My daughter does live we us along with her two boys 6 & 8.  It is crazy most of the time.  We are a big fat loud Italian family as well.  Actually during the most stressful times, we can turn it comical.  Guess i should be happy that i gave up being a control freak when my mom moved in with us 7 years ago  have a wonderful day y'all!!

Cocasabor1978

I completely identify!

Hi Nellie. I can completely identify on so many levels what you are talking about. My wife was diagnosed a few months back with stage 4 leiomyosarcoma (gastric/liver). I too have these same frustrations and yes it's so easy for people to say they will help but, we as caregivers need more than words we need action. Just to blow off some personal steam my wife's friends claimed to want to help make a purchase for an expensive scarf that my wife can wear and wanted so I bought it with the agreement to get some money back for it. Guess what? I got stuck with the bill lol...shocking isn't it lol. I am taking it in stride since, its all I can do at this point and do my best to continue to be there for my wife. This road has been quite difficult to say the least. Many sleepless nights, worrying, wife groaning in pain, bills and the list goes on an on! All we can do is our best and continue to pray for each other!

Hussy

Cocasabor1978 said:

I completely identify!

Hi Nellie. I can completely identify on so many levels what you are talking about. My wife was diagnosed a few months back with stage 4 leiomyosarcoma (gastric/liver). I too have these same frustrations and yes it's so easy for people to say they will help but, we as caregivers need more than words we need action. Just to blow off some personal steam my wife's friends claimed to want to help make a purchase for an expensive scarf that my wife can wear and wanted so I bought it with the agreement to get some money back for it. Guess what? I got stuck with the bill lol...shocking isn't it lol. I am taking it in stride since, its all I can do at this point and do my best to continue to be there for my wife. This road has been quite difficult to say the least. Many sleepless nights, worrying, wife groaning in pain, bills and the list goes on an on! All we can do is our best and continue to pray for each other!

I try to roll with the

I try to roll with the punches the best that I can, but it does get trying at times. On Saturday the family celebrated my mother-in-law's 77th birthday.  We all met at a restaurant located on the water.  My husband was feeling good enough to go and we volunteered to drive his mother there.  We picked her up early thinking she'd enjoy walking around the little shops and park nearby before we had lunch.  Right off the bat she starts complaining. "Why do we have to go so early?  Your sister won't be there yet."  On and on it went -- the whole drive down, the whole time there, the whole drive back. She needs a hearing aid but she won't get one so at some point she didn't hear a comment my husband made to me.  "You know, that is very insulting to whisper behind my back."  She whipped out her crossword puzzle and refused to talk to us for the rest of the ride home.  My husband asked her if she wanted to stop for ice cream and she curtly replied "I can't."  Please, lady!  Your son, who is gravely ill, was just trying to make your birthday special and he doesn't need this from you. Neither do I.  My husband and I just looked at each other rolled our eyes.  We  made a pact that we're not going to let her antics get to us anymore.   

elsiew

Thank you

Your comment made the tears start rolling down my face.  

Yes, I've felt so much of what you shared.  Knowing that you understand, stranger, is such a comfort on this horrendous day (went into the ER at 3:30am last night and started hospice today).

My mother has stage 4 breast cancer that has metastasized to the brain.  She's been fighting it for 4 years and was doing so well.  This summer has been up and down, but this past week she became extrememly foggy and finds it very difficult to move around the house.  It's so hard to take care of her while I see her deteriate so much.  It feels like I don't know what to do or how to help.  

It is so much harder to help when her mind seems so removed.  Being reminded that she knows, that she feels our love...that is so encouraging.

Thank you for getting it.  Thank you for sharing. 

Betsy

Meowycat

elsiew said:

Thank you

Your comment made the tears start rolling down my face.  

Yes, I've felt so much of what you shared.  Knowing that you understand, stranger, is such a comfort on this horrendous day (went into the ER at 3:30am last night and started hospice today).

My mother has stage 4 breast cancer that has metastasized to the brain.  She's been fighting it for 4 years and was doing so well.  This summer has been up and down, but this past week she became extrememly foggy and finds it very difficult to move around the house.  It's so hard to take care of her while I see her deteriate so much.  It feels like I don't know what to do or how to help.  

It is so much harder to help when her mind seems so removed.  Being reminded that she knows, that she feels our love...that is so encouraging.

Thank you for getting it.  Thank you for sharing. 

Betsy

WOW

I missed a whole lot from everyone while I was away from the site. My apologies. Life threw us a curveball. Got mom from hospital to home hospice in July and just when we started to settle into a routine we had a two alarm fire on our floor of the apartment building August 10th. Dad and I had to drag mom down the hall, down 5 flight of stairs as the fire burned down the hall. So happy to just be alive. Then we were displaced for a week living in various hotels. During that week Dad and I had to clean the house so mom could get back in.  The building just finished painting this past week and we had to move everything back. Gosh we are all tired. Today mom had a little fever and not feeling so hot. Neither am I. Both of us got checked and looks like we have some sort of virus. Not surprised after all we have been through.

I have resolved myself to the fact that I will lose my mom to the cancer at some point, but I would have been damned if she was going to die in a fire.

Well that was my power packed couple of weeks.

I read all your posts. Stay strong, lord knows the tank goes on empty, but we just plug along.

Love you all,

 

Nellie

mrkelley

Thanks Nellie!

I am new to the forum and this post summed up EVERYTHING I am feeling.

My wife had a stroke in October 2014 followed by a diagnosis of endometrial cancer in Feb 2015. We have been through chemo and alternative treatments but the cancer still continues to grow. The next option is surgery but we have been told that even that will not extend her life. 

I have been her primary caregiver for 10 months and it has consumed my life, affected our finances, as well as my mood. I used to be a happy, positive man...now I just get through the day. I seldom socialize with people because the conversation is always about my wife. I love her dearly but I get tired of giving people updates of everything that is happening.

I am self-employed and my income has been severely affected because I don't have the energy to focus on my business; doing the laundry, getting the groceries, making all meals, arranging her meds, helping her to the bathroom, getting her to bed, etc, etc, consumes up all my engery. And it SUCKS.

Anyway, thanks for the post. It was helpful reading it along with all the responses.

Kelley

koldjin

mrkelley said:

Thanks Nellie!

I am new to the forum and this post summed up EVERYTHING I am feeling.

My wife had a stroke in October 2014 followed by a diagnosis of endometrial cancer in Feb 2015. We have been through chemo and alternative treatments but the cancer still continues to grow. The next option is surgery but we have been told that even that will not extend her life. 

I have been her primary caregiver for 10 months and it has consumed my life, affected our finances, as well as my mood. I used to be a happy, positive man...now I just get through the day. I seldom socialize with people because the conversation is always about my wife. I love her dearly but I get tired of giving people updates of everything that is happening.

I am self-employed and my income has been severely affected because I don't have the energy to focus on my business; doing the laundry, getting the groceries, making all meals, arranging her meds, helping her to the bathroom, getting her to bed, etc, etc, consumes up all my engery. And it SUCKS.

Anyway, thanks for the post. It was helpful reading it along with all the responses.

Kelley

A big thanks

This site and now this thread have been wonderful. I felt so alone even though I knew I wasn't because I didn't know where to look. And the comment about "you are so strong" and the constant "is there anything I can do" get very old very quick. I know they all mean well and have good intentions for the most part but man. So this board has been a great help and even my wife who has stage IV cervical cancer that just keeps spreading. Chemo and radiation have no effect on it. So to be able to vent is great and my wife is very happy I found a place to vent also.

 

As far as the caregiving part it is very tough. I am not what you would call a natural care giver but am kinda learning on the fly. It is strange that just when you think you've hit as far as you can you somehow manage to find another level of care all because of love. And not just me but listening to other people it is truly amazing

God bless all

Mark_1

Thank you so much for the original post. I have read most of the reply's as well. I a new to being a caregiver. I have much family who like to come once a day for an hour. They just dont get the all night changing, cleaning, crying out in pain. I am supposed to be working the weekends. Everyone keeps saying they will help out. But I need someone here at all times not just one hour here or there. The stress was really killing me until I read your post it gave me some room to vent and realize that this is common unfortunantly. 

I will never look at a care giver the same again. God Bless all of you

 

Thanks,

 

Mark

barbelaine1

wow

You have said exactly what Ihave been trying to verbalize. Thanks.

Meowycat

HI EVERYONE! STAY STRONG

Today I decided to just check in and I cannot believe that my post is being read and helping even in the slightest way to make some of you not feel so alone.

It has been 10 months since my mom passed and I have moved on to what I call a "semi" normal life. I feel like I am in a dreamscape-I still don't believe she is gone and at other times when the pain comes it is unbearable. Being a caregiver is one of the hardest things in life. It is physically and emotionally trying. But I have to tell you, that losing a loved one is just as emotionally trying. The emotions are from nothing to everything. There is a new perspective to life and death.

What can I tell you today? Today, if just today make a memory with your loved one you are caring for. It could just be as simple as sharing a cup of tea (or ensure) or playing their favorite music.

My mom in her last days held out for Christmas because she knew it was my favorite Holiday. Even in her sickness she was aware that she did not want me to have unhappy memories for the holidays. Even in her sickness she was thoughtful and giving. The next day she ceased to speak or open her eyes. We lost her on New Years Day.

Make sure you tell your loved one once every day a kind word (even when it's rough and you are on your last leg) because it matters.

And you all matter and are beautiful. Stay strong. Stay bright. You shining angels.

Sending Love and Hugs,

Meowycat (Nellie)

Papa Bear

Thank you Meowycat

Nicely put, thank you.

MrsMLT

Thank you from Albany, NY

My husband and I were told on April 1st that he has esophogeal cancer so we are in the really early phase.  He has had a CT Scan and it appears pretty good and isolated.  There are a few areas that I want to check with the oncologist (18th) on but we have a long road ahead of us.

I want to say Thank You for this post.  I don't know if I am a selfish person or what but everyone is texting him and asking how HE is doing, which is totally understandable but what about me?  He is my life!  He is my all!  All the possible outcomes are crossing my mind and I am so unbelievably scared; I've cried so many tears over the past week and I am sure there will be more.  I don't feel like any of our friends understand! 

Heck - my husband is stronger then I - he says no need to worry right now (and I am trying to take his advice ).