Sunday, February 19, 2012

Appreciating the caregiver

So I am normally blogging about what I as an ALS patient goes through. I feel it is equally if not more important what the caregiver goes through. My caregivers are my husband, daughter. I want you to be able to understand the importance of respite care. As many of you know I have to depend on others 100% of my daily needs but What happens when they are sick or unable to care for me. what happens is they still do it and without complaining. But as a caregiver they need breaks and time for them. It's not that they love me less. They need it to take care of them. I am not very difficult but imagine you taking care of a child getting them ready as well. But a child is smaller and the needs aren't as demanding. You tend with feeding and the medication. Not to mention the worries they have when they notice things changing and the disease progressing. I don't complain at least I try not too. The caregiver not only deals with the person affected by the disease. They deal with the household needs and the children and the financial needs for everything and everyone. Not to mention the up keep of the house. The caregiver never feels that they can just go do what they want without the worries they have about everything else. I did help care for my mom when she was sick however I don't know what my family goes through. I do know that they need and deserves much needed respite care. In order for the person who is affected to get good quality care the caregiver and children need and deserves frequent breaks and acknowledge that what they do is very appreciated. Respite care isn't just for the patient, respite care is for the family who deals with the daily needs and stress that is cause by handling the daily struggles and the stress of the changes of the unknown and the worries that that need to be there. Please note this is my perspective on what I see with my care giving. Each person is different and what I see and share is just a tiny glance into my caregiver experience. Lets face it the caregiver's job never ends, even at night when I'm sleeping John will sleep but he still wakes up to make sure I am breathing or to cover me up. A caregiver doesn't have a job that ends at a certain time because it doesn't end. As for kids well lets just say that it's not easy for them. My daughter comes and gets me out of bed every day and gets me my am medication and breakfast and lunch. She also takes me to my appointments. I also have my son that lives out of state. Just because he is out of state makes it easy for him think again. He worries that he can't be here and wants to help out every way possible. Then I have two that are still in school and to think this doesn't affect them. It does! They all worry and they equally share the stress of a parent with a fatal disease. Caregivers and children need and deserve much needed time away and not think about the disease. Even though I don't get that break, I don't deal with what they deal with daily. Just remember the caregivers need to take breaks and time for them in order to care for you. They also need to know that they are appreciated and what they are doing means something to you. They to are dealing with the sickness and they to have feelings and need support.

9 comments:

  1. Robin...
    You are so inspiring.You definaltly are a fighter.I came across this blog cause i do alot of research for als,because my father has had it since 2008,and now,it is hitting him hard,Its been hard breaking,and hearing your thoughts,and reading your experience thru this has very much humbled me.
    I will say,i have many fears for my dad,as his als is taking over very fast now.He has a positive outlook,but I think he hides alot of the real candid details from us kids,so we dont worry.
    So i thought that if i read thru those who know exactly the way he is feeling right now,that it may help me truly know what he is feeling even thou he dosent talk about the als.
    he is suffering,my heart is breaking,and I will be adding you to my my prayers .You seem so strong and so positive.God bless you for sharing all of this with all of us.You are very inspirational.Thank you so much for sharing your life...

    ReplyDelete
  2. “They also need to know that they are appreciated and what they are doing means something to you.” – This is one thing that recipients of their outstanding care must do. It's important for caregivers to know that you acknowledge what they're doing and that life becomes easier because of them. By doing so, they will become more motivated to perform well and give you utmost care and attention.

    Theodore Wong

    ReplyDelete
  3. Nice blog! Your posting are very appreciative. I honestly liked this great post. Please keep posting.

    Caregiver San Diego

    ReplyDelete
  4. We usually see jolly and friendly caregivers. I think it's given for them to be like that because they need to inspire their patients to get better. What we don't know is that they run through a lot of issues as well. Acknowledging their brilliant service is a simple way to show our gratitude toward them. A simple thank you is enough to make them smile.

    Taneka Carl

    ReplyDelete
  5. Hi Robin,

    I have a quick question for you regarding your blog, but I couldn't find your contact information. Do you think you could send me an email whenever you get a chance?

    Thanks,

    Cameron

    cameronvsj(at)gmail(dot)com

    ReplyDelete
  6. aging parentCaregiver Space. The work we do at The Caregiver Space stems from our commitment to ensuring caregivers feel seen, heard and most of all supported.

    ReplyDelete
  7. Caregivers are the unsung heroes of today, and it is nice that you appreciated their work. But the primary focus of caregiving is people like you; that is, to give you the comfort that you deserve. Sometimes, caregiving from your own home is a viable alternative, as it is more comfortable than staying at a nursing home. There are options available to you on this regard and I hope you can continue on appreciating caregivers as much as they appreciate their work.
    Roland Todd @ Home Care Sugar Land

    ReplyDelete

  8. My mouth is short of words, I am so so happy because DR.OHIMAL has healed me from ALS ailment which I have been suffering for the past 6years now, I have spend a lot getting drugs from the hospital to keep me healthy, I have tried all means in life to always become ALS negative , but there was no answer until I found DR.OHIMAL the prince of africa who provide me some healing herbal cure that he uses to help me, now I am glad telling everyone that I am now ALS Negative, I am very very happy, thank you DR.OHIMAL for helping my life comes back newly without any form of crisis, may the good lord that I serve blessed you DR.OHIMAL and equip you to the higher grade for healing my life. I am so amazed. so I will announced to everyone in this whole world that is ALS positive to please follow my advice and get healed on time, because we all knows that ALS disease is a deadly type, contact Dr.OHIMAL for your ALS healing herbal cure today at: drohimalspelltemple@gmail.com He will be always happy to assist you online and ensure you get healed on time, today for your healing herbal cure immediately, thank you sir.

    ReplyDelete
  9. Hello to everyone reading this , My name is CONNOR BELLA am from LONDON (UK) , i was once diagnosed with ALS but now am cured , want to share this great and wonderful testimony to the general public on how i got cured from ALS (Amyotrophic Lateral Sclerosis) by DR IMONAH healing herbal medicine , I have been suffering from ALS for good 3 years now and I was almost going to the end of my life due to the constant pain, especially in my Body system , my spinal cord to my voluntary muscles of my body . all I have in my mind is let me just give up because life was no longer intestine to me any more but I just pray to God every day to accept my soul when ever I die, luckily to me , my MUM ran to me that she had found a doctor in the internet who can cure ALS , HERPES , HEPATITIS B , LUPUS, and HIV/AIDS,CHRONIC PAIN ) she helped me out in everything, the great DR IMONAH only ask for my Details and how to get Medicine , so that he can prepare a Herbal medicine for me and send it to me in my country , which he did.. so after two days of getting the medicine and taking it as prescribe to me from him , I started getting more stronger my blood started flowing normally , my voluntary muscles of my body was getting strong , my spinal cord , every thing in my body was now working fine , i started experiencing changes all over my Body system as the great DR IMONAH assured me , then my MUM told the DOCTOR my experience , from there DR IMONAH my MUM that i should go for medical check up that i have been cured , i show so many changes i was walking fine now , so after some time i went to my doctor to confirmed if i have be finally healed , behold it was TRUE and i was very Happy , so i say if you been sick of ALS i advice you all to contact him on Via mail at (drimonahspiritualtemple@gmail.com) he is there waiting to help you All he can also cure HERPES , HEPATITIS B , LUPUS , HIV/AIDS ,CHRONIC PAIN or any kind of sickness he can get any type of illness cured....his a nice person God sent ...THANKS DR IMONAH GOD WILL BLESS YOU .

    ReplyDelete