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FOR ALL THE CAREGIVERS FEELING BLUE, STRESSED, OR MISUNDERSTOOD

Meowycat
Posts: 58
Joined: May 2013

People in general do not understand what being a caregiver entails. Many of us are sleep deprived, stressed, anxious, and very few understand. I wanted to say to all of you, I understand how you feel. Here is a list of what I personally encounter, please feel free to add to the list.

Family and Friends love to say if you need anything, anything just let us know. Then you call them and they are not available or they come over to sit there and stare at the ill family member. You know what we need? How about saying "Hey let me help you with: laundry, dishes, sweeping, cooking, etc. ". Still waiting for that to happen.

The above do not realize that being a caregiver means: you are up all day and night with your loved one going for 7 bathroom runs because they are a fall risk and you are terrified they will fall and end up in the hospital. Can't deal with the guilt if something happens. They have to be dressed, undressed, dispensed medication throughout the day (some of it being IV), bathed, cleaning up poo and trying not to gag, listen to your loved one groaning in pain, being lashed out by your loved one, you lashing out in frustration at your loved one, getting to doctors appointments (and there are many), freaking out because you have to take them to the hospital, calling their doctors constantly, making sure everyone in the family is fed, ok emotionally, ready for work/school, cleaning the house, etc, etc, etc.

In the meantime no one sympathizes that you have to also go to work,that you had to leave work to take care of someone, you can't find two hours for yourself, you can't go to the doctor for your own checkups, your bleeding money, that you have not been on a vacation in forever, your hands are dry and rough, you have not had a good healthy meal for at least a week straight, that you are  coming down with a cold, you have been crying in your sleep for lord knows how long, you have to put someone in hospice, you have to buy a plot, make funeral arrangements just in case, that you need a haircut, you have no social life/lovelife, etc.

Everyone will judge you in some way, shape, or form and it will hurt.

But your loved one deep down knows what you are doing even if others don't get it.

But I get it and I love you. You beautiful, wonderful caretaker, so strong and unselfish. You don't have to be perfect you just have to be you.

 

Stay Strong,

Nellie

 

 

Suemarie
Posts: 23
Joined: May 2014

That was beautiful and I so 'get it'. My husband has had a host of medical problems over the years and I take care of him and no, most people don't 'get it' unless they have gone through it. One time I was all excited because I had arranged to have someone watch over my husband so I could spend a few hours at my family reunion and my sister in law said "You worry too much about your husband and if you're just coming for a few hours, why bother?" I get so tired of hearing 'stay positive, don't worry so much,' etc etc. I don't think I'm a negative person at all but I'm not free to gallivant all over the place and most of my past 10 years has been in hospitals or doctor's offices waiting on procedures, surgeries and results.

But you know, I wouldn't have it any other way. I love my husband with all my heart and if I can make his life easier even a tiny bit by helping, I will do it. He's the love of my life and I often wish I could do it all for him - have his surgeries etc - just to give him a break.

So cheers for caretakers whose love is so strong that we give and give and give - with all our hearts. :) WE ROCK! Cool

Meowycat
Posts: 58
Joined: May 2013

Suemarie,

Loved your post and thanks for adding the fact that people are always saying "be positive/stay positive". It makes me cringe.

The other good point you made was that it is hard to get away for a few hours and yes people don't understand that when we are away for a few hours there is always that anxiety that something may happen or not go well.

So thanks for being a bright light in a world of darkness.

 

Nellie

soul-mate's picture
soul-mate
Posts: 70
Joined: Feb 2014

Suemarie and Nellie,

Suemarie you summed it very well "I wouldn't have it any other way" The only thing for me to change is the gender. My wife is my world and yes to leave for groceries or short periods is hard to do. People may understand if they had to walk a mile in our shoes.

Sometimes I think ignorance is bliss. Tobias Smollett quote " some folks are wise and some are otherwise " To all caregivers we know where our priorities lie and wouldn't have it any other way. Bless you all on your journey.

SOUL-MATE

Suemarie
Posts: 23
Joined: May 2014

WE ALL ROCK!  :) And we sure know how to love with infinite compassion and loyalty. I will always be by my husband's side, no matter what. And it looks like we have a new medical challenge to face but we can do it, I know we can.

That, being said, my husband's medical issues have been going on for 10 years and I really do try to keep myself healthy and also spend time with my own hobbies. I find that allowing myself little breaks and moments where I can lose myself in my hobbies, nourish myself and re-energize myself, I find I can give more. So while I'm giving my all to him, I try to give a little to myself too.

I truly think that us rocking caretakers need a little TLC too. :)

graftonchris
Posts: 2
Joined: Jun 2014

WOW!  you have hit the nail on the head.  Friends call and talk and all you do is end up crying while telling them a small part of what you are going through.  They mean well but all I hear are the old cliches.  It's even harder when the caregiver is a senior becuse it takes longer to do everything.

Also, thank you for saying what I am feeling.  The guilt is a bit littler now.

Just joined so if I'm not doing this right, sorry.

Meowycat
Posts: 58
Joined: May 2013

Sorry it took me long to respond back and see how eveyone is doing. Mom was hospitalized again Friday and the oncologist says we should start thinking about Hospice care because she basically has gone through most of the chemotherapies for Colon Cancer and they are not working and is too weak and sick to handle much more. So it's been an emotional week. Tune in next time for my rant regarding Medicare and Hospice and how you will be bled dry.

Hope all the caregivers are keeping on.

P.S. grafronchris-welcome and feel free to pick my brain anytime. I have been on this site for two and a half years lurking in the colorectal discussion boards. You will learn a lot from the wonderful individuals on this site and get the support you need.

Ladylacy
Posts: 517
Joined: Apr 2012

Sorry but I don't understand your rant on Medicare and Hospice.  My husband has been on hospice since September and it hasn't cost us a thing.  Yes when you agree to hospice you no longer take your loved one to the hospital or doctor unless Hospice is called and tells you you can.  There are two types of hospice, in-home and in-patient hospice.  My husband is on in-home hospice.  He is terminal with 2 primary cancers but isn't doing too bad.  In fact, I am thinking of taking him off hospice.  His oncologist talked him into hospice when I felt it wasn't really needed. 

Also I have found out if you are on a Medicare Advantage Program, they won't pay for anything unless you come off hospice.  That wasn't explained to us.  Hospice only covers what you go on hospice for and as of June 1, 2014, Medicare says you have to have prior authorization for medications that you were taking before going on hospice.  Thank you Obamacare.  Medicare is being cut to pay for all those that are illegal and Obamacare.

When you talked about being a caregiver and how no one really understands, that is so true.  Even your grown children don't understand because they only see what they want to see and at times think you as a caregiver are making up how bad things are.  When people don't see the one sick every day they just don't understand.  Caregiving is a 24/7 job, and we are the ones who see the changes and know how the patient is doing, not someone who comes in once a week, once a month or calls periodically.  I have always been told just call me if you needn anything.  Well what is wrong with just showing up and saying to the caregiver take off and don't come back for a couple of hours.  Caregivers need relaxation too and very much need to take care of themselves, something we don't do.  People don't understand why I won't meet them for lunch and the movies.  Well I don't feel comfortable leaving my husband for more than an hour at a time without worrying myself sick.  I run to the store and am gone generally 30 to 60 minutes maybe twice a week.  I put off doctor appointments for myself since that it can more time depending on how busy the doctor's office is.  Since my husband has no voice due to the cancer, it is hard for him to call or answer the phone because the majority of people won't take the time to understand what he is saying with his electrolarynx. 

But I'm like the majority of caregivers, I wouldn't change it for the world because he is my world and has been since I was a junior in high school, 54 years ago.

 

Meowycat
Posts: 58
Joined: May 2013

This is exactly my frustration with Medicare Programs and Hospice. Oncologists, Social Workers, or Medicare themselves need to do a better job communicating with family costs, coverage, etc.

My mother's oncologist who is great, was trying to steer us towards a Hospice Facility saying it will be very hard to take care of my mom with hospice at home.

I then find out that if she has assets and is sent out to hospice it is all taken to cover the costs. She and my father worked hard for whatever little money she has. I have no issues with her social security check being taken but I have a real hard time regarding assets.  No one explained any of this to us.

I do understand about not being comfortable leaving your husband by himself. It's the same with my mother.  You sound like a great wife.

P.S. thanks for the tip about medications and prior authorization. For every person that I speak with, I learn a little bit more.

Ladylacy
Posts: 517
Joined: Apr 2012

Medicare covers in-patient hospice provided it is an approved hospice facility.  You need to check that.  We don't pay anything and yes my husband is on in-home hospice.  But I know others that have had loved ones in in-patient hospice on Medicare and they didn't pay anything.  Remember Medicare is different than Medicaid.  And if it is a nursing home then I think they can take some but not all of the patient's assets.  But hospice is paid for by Medicare but it has to be a hospice facility not a nursing home.  They don't take social security monies either, well nursing homes do but not hospice.  Please check this out carefully.  My aunt was in-patient hospice and they didn't have to pay anything.

In-home hospice is good and not all that hard as long as there is someone who can be with the patient 24/7.  My husband will stay home and would only go in-patient if we can't control his pain at home.  

susyq7's picture
susyq7
Posts: 10
Joined: Jun 2014

What an accurate description of a caregiver!!! The only thing I can add is people that tell you how "strong" you are. We don't have the luxury of falling when there is no one there that would actually catch us if we did fall. The staring at ill family member is priceless. They always say if there is ANYTHING you just call or ask. Hints sure don't do the trick!!  Do they actually think bringing their children with them to scream and destroy the house cheers up anyone? I always try to keep our home spotless and when they leave me with a pile of dishes and a mess to clean up I wonder...yes I wonder... OMG a hot meal and time to eat it would be nice. Most expect us to have snacks and coffee or colas for them. I'm not selfish but I don't have time to shop for myself. Ahhh, thank you for giving me this chance to rant. Thank you Meowycat. You gave me my first smile in a long time.  :)

grandmafay's picture
grandmafay
Posts: 1629
Joined: Aug 2009

I'm not going to add anything because you have all said it. I am no longer a caregiver having lost my husband 5 years ago this October. I don't come here every day anymore or even several times a day as I once did. I am glad these boards exist and that each of you are here. We get it. That's important. Knowing others share our thoughts, feelings, and experiences helps get us through each day. Remember to take care of yourselves, too. Fay

Hussy
Posts: 11
Joined: Jun 2014

 

Reading this thread was completely cathartic.  I am relatively new to this whole cancer thing (my husband was diagnosed last October) and I like to tell myself I am handling it well (whatever that means), but I’ve come to the realization that this is taking more of a toll on me than I thought.  I have felt so alone.  I needed to read this and know that there are other caregivers out there going through what I’m going through. 

 

Noellesmom
Posts: 1317
Joined: Aug 2010

Very accurate description.  Added to it is the need to make sure my children don't believe they need to follow my path when it comes to caregiving because not everyone can.  I went from caregiving for my brother to my mother to my husband who survived his cancer but has other serious health problems with some as a result of his cancer treatment.  Crying in my sleep:  I can identify with that.  I have night terrors.  I lift a prayer for all caregivers whether they are at home, in a hospice facility or, like me, sitting in a hospital room with their loved one.

 

 

tsittig
Posts: 1
Joined: Jul 2014

I felt I needed to respond to your post right away becuase I have never felt so alone too. My husband was diagnoised with stage IV lung cancer in April and we have been making the trip to Boston almost weekly (2 hour drive). In the beginning our family and friends were so attentive, but now that summer is in full swing, we don't hear too much unless we call. My husband is on pain meds that greatly affect his abiltiy to concentrate, so our conversations are limited. I joined this site yesterday and I think it might help! 

Hussy
Posts: 11
Joined: Jun 2014

Hi Tsitting -- I'm sorry you have to be here.  I know what you mean about the "novelty" wearing off and feeling as though family and friends move on with their lives while you are left behind. It's hard to see a loved one struggling with concentration issues because of pain meds or chemo brain.  My husband sometimes has troubling finding the word he wants and his memory can be just awful -- he'll forget something I told him yesterday.  I hope this site helps you.  Try the chat room.  I have met some really nice people there.  I tend to check in around  late morning -- lunch time.  Maybe I'll see you there!

 

Meowycat
Posts: 58
Joined: May 2013

because yesterday my mother's oncologist told my father and me that mom's body can not handle any more chemo/radiation. She has been battling for almost 3 years and has been in the hospital for the past seven days. She is cold, can't keep food down, so tired, and uncomfortable. My dad and I had to tell my mother this morning that because her body is weak there will be no more chemo/radiation. We told her when she leaves the hospital we will take her home with the help of hospice and make her comfortable and happy. She asked us if that meant she was going to die (this was the hardest thing to hear ) and I told her no one but God knows when it is our time. She was very stoic and sad at the same time. Perhaps in her sickness she could not dwell on this as she said to us she feels like she is in "limbo". My poor father's face. I just saw his heart break in front of me.

Just when you think you have gotten to your lowest emotional point as a caregiver, there always seems to be a new all time low. You all know the feeling, its like someone stabbed you in the heart and left the knife in.

So now there will be a new chapter called: Hospice.

Hoping I am strong enough for both my father and mother.

Huggies,

Nellie

Hussy
Posts: 11
Joined: Jun 2014

Nellie --

I'm so sorry that you received such difficult news. 

My thoughts are with you.

Shelley 

tired2012
Posts: 1
Joined: Jul 2014

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.

Sandi1's picture
Sandi1
Posts: 277
Joined: Aug 2008

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

 

soul-mate's picture
soul-mate
Posts: 70
Joined: Feb 2014

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

Sandi1's picture
Sandi1
Posts: 277
Joined: Aug 2008

Oh My god - this exactly how i feel.  My husband was just recently put under hospice care at home and i'm freaking out.  I had to leave today and go to work, because 1.  we are running out of money; 2. i was going crazy sitting there looking at him 3. i just needed a break.  but then when i'm here at work, all i think about is him at home.  My sister is staying with me for as long as i need her. and yes she helps with housecleaning, dishes and looking after my husband. but i am still stressed out.

Thank you for putting all our thoughts down on paper.

Sandi

 

Sandi1's picture
Sandi1
Posts: 277
Joined: Aug 2008

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

 

Hussy
Posts: 11
Joined: Jun 2014

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 

Meowycat
Posts: 58
Joined: May 2013

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 Surprised.

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
Posts: 56
Joined: Mar 2012

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
Posts: 11
Joined: Jun 2014

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
Posts: 56
Joined: Mar 2012

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
Posts: 11
Joined: Jun 2014

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 freakSmile) 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
Posts: 56
Joined: Mar 2012

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 Surprised have a wonderful day y'all!!

Cocasabor1978
Posts: 1
Joined: Aug 2014

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
Posts: 11
Joined: Jun 2014

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
Posts: 2
Joined: Aug 2014

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
Posts: 58
Joined: May 2013

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

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