So tired, any caregivers out there feel the same?

So tired, any caregivers out there feel the same?

Posted by Gina_2151753 on Aug 12, 2013 5:32 pm

My husband recently sustained a spinal cord compression injury resulting in paraplegia.  This after nine years of chronic illness including cancer, ostheoporis, myasthenia gravis, chemo, radiation, staph infection, surgeries,  etc. etc.  I am and have been his sole caregiver all of these years.  Only married 3 years when this all began.  I have an 8 year old daughter who  has never know a healthy father.  He was diagnosed when I was pregnant.  Just venting!

RE: So tired, any caregivers out there feel the same?

Posted by Casey_2151933 on Aug 16, 2013 2:58 pm

Hugs Gina!  Vent! Vent at the top of your lungs in your car as you blast the radio.  You have to vent and lose it from time to time.  I promise it does help relieve some of that tension.  I am my 10 year old daughters caregiver.  She was paralyzed from Transverse Myelitis 3 years ago. She went from running to chair bound over night and it was awful and it still is.  Life doesn't get easier with her---because she is growing up and it opens this whole other season of heartache.  

find a way to spoil yourself...a pedicure, a lunch alone or with friends.  Treat yourself to a pretty new shirt.  Take care of you first and you can better handle everyone else.  HUGS!

RE: So tired, any caregivers out there feel the same?

Posted by KGN on Aug 16, 2013 6:58 pm

God bless you, Gina! Being the sole caregiver so someone takes so much out of a person-- I know! If you read what\'s going on with me today, you\'ll see that I did everything for my brother and had no time to even do my own basic grooming and dressing! Now, I\'m so exhausted! I thank God that my husband went to the store and cooked supper, because I\'ve not had the time to cook nor eat! I truly understand what you\'re going through, but please remember to have some quiet time for yourself, or indulge yourself with a fun phone conversation with a fun loved one, or have a glass of tea or other healthy drink, or do something sometime to indulge yourself, like sometimes when I am stressed, I take off my socks and shoes and rub lotion on my feet and toes, haha! When I get a break, I try to do something soothing to myself, especially since I have an anxiety disorder. I hope sometime during each day that you take time for yourself. For me, just getting to bathe, brush my teeth, dress, and wash and fix my hair is a luxury! I relish my alone time with my husband! Sometimes the occasions when we can have private conversations are so rare that I just don\'t always know what to say. Sometimes, we just hold each other and cry. Our lives are so different now. My husband has been my rock, but it wasn\'t until just recently that I began to realize what my being gone away from our home and staying with my brother in his home while taking care of him really affected my husband. He was devastated! And he was the last person I\'d ever want to hurt in this world, so Gina, I truly feel your pain. I am my brother\'s sole caretaker and will be indefinitely. I understand how it might feel like being trapped.

RE: So tired, any caregivers out there feel the same?

Posted by Sara_2152313 on Aug 29, 2013 11:46 am

Gina, It is very hard. But youre not alone. Remember how much this person depends on you. And it is good to vent, cry, etc., personally wine helps me ;-)  Without you this person may not have such a nice life.

RE: So tired, any caregivers out there feel the same?

Posted by Darlene on Sep 1, 2013 5:14 pm

Hi Gina, can relate, just wondering do you have caregivers to help you?  Do you have to turn him or do you have a rotating mattress?  Both of these have literally saved my sanity and life.  Do you use a hoyer lift to get him in/out of bed or a slide board?  Just curious, what state do you live in, I live in Georgia.  I recently found a good therapist and go vent to her.  All advice says do good things for yourself, take time out for YOU.  Answer back if you'd like.  Darlene

Re: So tired, any caregivers out there feel the same?

Posted by Suki on Jul 13, 2014 2:23 am

Hi son was in the Air Force when he contracted ALS. He moved into my home in September. We are lucky to have two caregivers,
a male and femal veteran who served as a medic in Afghanistan. So, we have coverage 6 hours a day, five days a week and are really fortunate 
because the VA pays for their care. However, I find myself on constant alert. I hear him call my name at night when he isn't calling at all.
I know that we have a limited amount of time  together but keeping myself together is important, too. I am trying to learn how to balance family needs
without losing my identity. Friends can't come over because he is self conscious about his appearance. So it is pretty lonely here.. I live  on the Northwestt coast.
I paint and listen to a lot a lot of rock and roll and dance to the music. Reading, journaling and watching Netflix streaming is a great stress reliever.   Hugs to you,
we are all walking the same path together.

Re: So tired, any caregivers out there feel the same?

Posted by Dan Gottlieb on Jul 23, 2014 3:34 pm

Dear Suki,

the plight of the caregiver is the untold story of selfless devotion, endless worry and sadness – not to mention exhaustion. You are correct that it is a blessing that he has support from the military and his caregivers are not only competent, they "get it".

But where is your support system? I'm not inviting you to play a zero sum game that many families can involved in: "if I take care of me, then you feel deprived. And if I take care of you the reverse…"

Disability is not one person's problem, it is a family problem. So what can we all do to help this family function in a way that creates an environment of love, kindness and mutual nurture? A disease doesn't stop love and generosity of spirit. What inhibits these things is the way we humans cope with extreme adversities like the ones most of us live with..

Suki, early into my disability, I had nursing care but my wife was my primary caregiver. And like your son, I was ashamed of how I looked. I felt useless and worthless. I once heard and insensitive urologist referred to his quadriplegic patient as a "half a man". Well, his ignorance aside, that's exactly how I felt. I hated my dependency and yet I was scared when my wife left the house. I knew she needed love and she needed a husband not a needy boy. I knew that my dependency was draining her, hurting her – not to mention the marriage.

And finally we talked. She told me what she needed of me; she said she needed me to give her permission to take more ownership of her life, to socialize with friends even go out to dinner or away for a weekend.
And I told her what I needed from her; to understand that when she left I was nervous and there was nothing either one of us could do about that. We both had to understand that in order for me to love her the way she needed to be loved, I had to be willing to be uncomfortable.

A mother and son have a very different relationship, but the issues are very simple. Shame, fear, deprivation, confusion and many other emotions. We have to find a new way to love one another. And if you have the courage to do so, tell him that getting out or having friends come over would be a way he could love you. And that you could love him that much more for doing that for you.

One never knows what the future will be-special with ALS. So with the you have years or decades together, the ongoing task is how you can love each other better and more generously. And in that process be kind to yourselves

Re: So tired, any caregivers out there feel the same?

Posted by Cari on Jul 30, 2014 3:09 pm

Yes! I have 4 adult children, my youngest son was 19 when he rolled his car almost 2 yrs ago, he wasnt wearing his seatbelt, and he is now a C/5-C/6 Quadriplegic. Thankfully I signed him up for a program where they pay his care giver, he can choose whoever he wants. His brother is getting paid to be his caregiver, however I have to shower him , do the bowel program, cook his dinners, laundry , etc. He is uncomfortable having his brother do the hygeine stuff. I also take him to PT/OT 2 days a week. I feel like I am chained to my home, because hes always worrying about the bowel program. Luckily I ended up on Long Term Disiblity right after his accident because of complications with my neck surgery. I have learned that getting out of the house if only for a few hours, helps immensly. Right now Im trying to plan for a 2 night stay in A/C, might be easier if I just take him w/us so I dont have to rush home.
I often wonder if I will have to take care of him forever or will he at least try to be independent and hire an aid? His brother is only 24 and I dont think we should expect him to be the caretaker forever. My youngest son keeps calling me into his room, it seems like every 10 min, AGH! He had me up until 4am the other night and then woke me at 9, so Im sleep deprived too.

Re: So tired, any caregivers out there feel the same?

Posted by Therese on Aug 5, 2014 2:49 pm

My son Tyler was in a accident Aug 17, 2013.  Did great at Craig Hospital but when he was dicharged everything went down hill.  He is home with my husband and I.  He has tried to hurt himself multiple times and been in Porter Mental Floor but they just discharge him saying there is nothing they can do.  He will not get out of bed lays in his urine he just does not care.  Broke his t8-t9 upper body strong,  was working out at Peak gym but just stopped 2 monthes ago.  We just received a Grant to use the locomat at Peak but we can not get him out of bed.  Jim and I are his caregivers but it's hard very very hard.  They say since he is 19 he has to want to do it, it just takes time.  How long????  Thanks Therese  Bailey Co.

Re: So tired, any caregivers out there feel the same?

Posted by Suki on Aug 6, 2014 1:33 am

Hey Gina,
    You have my total respect for 'hanging in there', you are amazing. I can't go to sleep until my son does because he can't get into bed
himself and I  have to help him get to his feet in the morning. He is stubborn and extremely resistant to any suggestions. I think the
little bit of independence he has is what is keeping him going. He has ALS and won't discuss burial decisions. I told him I will bury
him next to the family dog in the back yard. Someone told me seeing the sunshine on the wings of a butterfly is what keeps them going,
that and a wicked sense of humor.

Re: So tired, any caregivers out there feel the same?

Posted by RH on Jan 2, 2017 12:28 am

Tired, sad, depressed, can't believe this has happened, mad, upset about getting no family support to help to give you a break, not enough sleep, no time to keep yourself clean, let alone the house and washing, ya it all goes with being a 24-7 care giver. It can get better for you, but I bet everyone feels this way especially at the first when you have to start being a 24-7 care giver. I am a.24-7 care giver to my wife, her wreck was July 1st 2016, C4,5 quad. I think I have felt every feeling listed above and so tired I could not even see straight. Like I said it can and has gotten better. Every morning when we get up, before bowl program, anything, we have coffee, we read our Bible together, have a short bible study, talk about our hopes and dreams for our farm and how we are going to make it happen now, we pray together. By taking the time to do this each morning it has gotten better, we talk about our feelings, I tell her how I feel and what it feels like from my position and she tells me what it feels like from hers. We each try to understand how the other is feeling and what each of us are going through. Most of all we live by fath, by fath because we can nor see. ( 2 caritheans 5:7. ) I have lost 10 lbs and am taking better care of myself, getting better sleep at night as my wife is settling in more and not waking up at night as much. We now understand that nor everything is going to get done every day that we want but that's ok, I had to relax and understand that it's OK not to get everything done today, everything is going to take you longer to get done, take good care of yourself, eat right, its a life changer. It will get better for you as time goes by if you make the changes in yourself to help it along. God bless you.

Re: So tired, any caregivers out there feel the same?

Posted by Dan Gottlieb on Jan 2, 2017 2:28 pm

Hi Robert,

Dan Gottlieb here, the psychologist that hosts the "On Well-Being" discussion. What you described is a beautiful way of maintaining a loving relationship despite all of the physical and emotional issues we all deal with.

Much  of my private practice is with couples dealing with all sorts of adversities and conflicts. The ones who do best are the ones who believe that the relationship is bigger, more powerful and more important than the issues they are dealing with.

You have clearly demonstrated that in your relationship. It's about being honest with one another, sharing thoughts and emotions, and having faith whether it is religious or otherwise.

Thank you for being a great role model. I wish you and your wife much happiness this year and the next and…
Daniel Gottlieb PhD

Re: So tired, any caregivers out there feel the same?

Posted by Dan Gottlieb on Jan 25, 2017 3:47 pm

There are 40 million caregivers. Many caring for aging parents dealing with physical or cognitive deterioration. Many caring for disabled children. And many caring for adult children or spouses. 40 million. And what do we have in common?

Certainly fatigue, helplessness, frustration and anger, worry about the future and guilt. But perhaps the most devastating is the sense of being alone in the world. When you are thrust into this job without warning and without a set of instructions, first reactions or generally that of being overwhelmed and scared sh*tless. But when we are able to catch our breath, we don't have time to socialize. And when we do, we feel different from even our closest friends. This sense of being alone-alienated-can have dangerous consequences. Alienation and loneliness can cause anxiety disorders and depression. And it can actually shorten life expectancy.

We need the loving care of others to survive. And it doesn't matter whether we are patient or caregiver.
So what to do?

Of course support groups would be the most healing. Just spending time with kindred spirits can help diminish that sense of being alone in the world. Unfortunately, they might not be as available and accessible as we would like. So…

There's a wonderful peer support/mentoring program here at the Reeve foundation and they are quite easy to find. That's also a source of human contact.

And perhaps most important, we need compassion, kindness-even love. And all of those things are accessible from deep inside our loving hearts. Just look in the mirror and look deeply in the eyes of the person looking back at you. Look at it until you can see your own heart and soul, your goodness and your desire to do the right thing. You might be able to see that part of you that loves and aches for kindness and compassion. And I wonder if you could embrace that person looking back at you and feel great compassion and even love for that person.

If you can practice that every day, after a while you won't need that mirror you will just be able to sit in a comfortable chair, close your eyes and experience that part of you that suffers. And when you do, see if you can hold your heart with the same loving care you would a baby with a fever.

Please take care. Please

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