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.


  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...

  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

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

    Caregiver San Diego

  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

  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?




  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.

  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


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