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Jeannie

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Hello Everyone,
My MIL got her feeding tube about 2 weeks ago. All went as well as could be expected. They did notice in the hospital that her Oxygen was low (between 87 and 92) Long story short, we got sent home with O2 and we finally got a nurse and aide in. We are worried that home caregiver isn't pulling his weight with the dressing changes, her meds etc.... I believe that we are all getting together over the weekend to have a meeting and see if someone elses home would be better for her. I am just shocked that it has come to this.
I am sorry to vent, I am just so suprised when the "weight" falls on a select few and the rest just look on.
I pray for you all every day
In friendship
Jeannie
 

califsand

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Hi Jeannie,

You're right, it is hard. Some people just can't handle being part of the care... either they are too busy, not interested enough, or emotionally just can't handle it. Fortunately not everyone is like that and yes, it does end up falling on those who can handle it. Check for local resources regarding caregiving. If she is eligible for hospice, a nurse can come in and change the dressings and teach the family or caregiver the best way to do it.

I was intimidated by my Dad's peg tube at first. I felt like I was hurting him and was a little bit grossed out by it as well. I learned to be okay with it and within 2 weeks of him being home with it I was an expert at using it and keeping it clean. I required help to learn the tricks from the hospice nurses though! Get help wherever you can, especially if it is in the form of hospice or visiting nurses. That help makes all the difference!

I ended up hiring a caregiver, just a mom who had cared for her husband when he had been terminally ill. She was a great help because not only did she treat my father well but she also cleaned my house! I paid her from money the state provided for a caregiver. I don't know if this is an option for you but if your family is using hospice to help you, the social worker should have access to many resources.

Take care :)
 

CindyM

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Don't forget to ask the friends and family who don't step up to do some specific tasks that are not connected with nursing. Maybe they can deliver a meal once every 2 weeks, mow the lawn every month, take turns going to the grocery store. People usually want to help but fear it will be out fo their depth or very time consuming. JMO, Cindy
 

sharonca

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You can also check out the "Share the Care" web site - www.sharethecare.org - for ideas.

Sharonca
 

Jeannie

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Joined
Dec 19, 2007
Messages
222
Reason
Loved one DX
Diagnosis
01/2008
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US
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NJ
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Thank you both for your advise. We are going to have a family meeting and figure all this out. AHHHHHHHH! I think that it might come down to her moving in with one of us/ I am so concerned because I want her to get the best care she can which isn't in the home she is in now, mabe I am selfish, I am so concerned how this will affect my children, myself, my marriage etc...I will do whatever she needs, I just hope that everyone else follows through with pulling their own wieght.
This whole thing is horrible. We do have a call into her nurse and the social worker to see how we should go about this. .
Jeannie
 

califsand

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A family meeting is a great place to start. Keep in mind that if you bring her home and people offer to help, they may not follow through or it may taper off as time goes by. Even with the best of intentions, people often find other things that they need to do and whoever she lives with, IF she lives with family, will bear the brunt of the responsibility. If someone takes her in they should do what the other ladies here suggested, research & also find out what people are able to help with, even if it's not care oriented, and sign them up! A couple of my brothers who weren't willing or able to spend time helping, gave me money towards expenses. That was a way of helping that I was grateful for and it made them feel that they were helping provide for his care, which they were.
 

Jeannie

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Joined
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Messages
222
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Loved one DX
Diagnosis
01/2008
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US
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NJ
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Vernon
Hello all.
Oh there is no where to start, no where to end. Things feel like they are such a mess. My fear is that if whomever she were to move in with how do we manage her care? How do we afford someone to stay with her when we can't? In a fairytale everyone would help and this would all go away, but back to reality I can't see how this will pan out. I feel like i am drowning and so guilty for feeling like this.
Hopefully we will know more tomorrow.
I hope you are all well.
Jeannie
 

sharonca

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Jeannie - another good web site to check out is ALSCARE.com

If you haven't seen it before it is set up by a nurse who works I think exclusively with ALS patients.

Sharonca
 

CindyM

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Jeanne- no use either drowning or getting beating yourself all up over this. Try solving just a few things at a time. It is easy to look at a long list and feel overwhelmed- that's what always happens to me.
Hugs, Cindy
 

brooksea

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Go back to the social worker at the hospital and see if she/he can help set a "care plan" by calling in the family.

I was given this advice from someone in the home health care business when my husband had pneumonia and his family didn't seem to give a flying flip. I was trying to plan ahead, just in case it became serious.

Sorry you are having to deal with this.
 

CindyM

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That is a great idea, CJ. People tend to take things more seriously if they hear it from a professional associated with a hospital.
 
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