FOR ALL THE CAREGIVERS FEELING BLUE, STRESSED, OR MISUNDERSTOOD

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!

Meowycat said:

You Rock!

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

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

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.

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 said:

Hi Ladylacy

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.

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.  

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 said:

Thank You From a Newcomer

 

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. 

 

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.

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.

Hussy said:

Thank You From a Newcomer

 

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. 

 

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! 

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