On and off caretaker

I take care of my brother-in-law on and off. The one great thing about good family and good friends is they do help out. My sister is a wonderful person. My brother-in-law has ALS. My sister has to work because she needs the health insurance especially because my brother-in-law's medicare has not kicked in. Her job is very helpful because they let her take off a day here and there. Family and friends, many who don't live nearby including me have been taking week/weeks at a time caring for him. He can still do quite a bit. I am going up there again at the end of the month and I don't know how I feel about it. This is only the second time for me although I have seen his decline for a year now just from visiting. All I can say is I don't know what I am feeling.

terrics

You don't know what you are feeling about - what?

Glad you are helping out! That's great!

Are you feeling just a little put out? Sorry, but it sounds like you are. And if you are, don't be the one that happens wipe his brow or his chin or anything else.

Perhaps I've over stepped my bounds, but my husband is declining rapidly and I fail to have sympathy for those that cant handle pALS!

Just find yourself busy with another "just" cause when called upon to be a caregiver! It really is so easy to ignore. Better that, than resent caring for your BIL!

We all have a bad day once in a while CJ. Don't sweat the small stuff.

AL.

I apologize for such abruptness and perhaps maybe I've misinterpreted the post by terrics.

It is great that your sister has an understanding employer and good family and friends to help her. In regards to yourself, I am guessing you are referring to the hands on care needed as the disease progresses. Many people on this forum know what is required to take care of a pALS. The hands on care goes beyond the normal give and take of any relationship. I can easily see myself providing the 24 hr hands on care for my husband, child, parents and siblings. Providing the same level of care for my BIL or my best friends husband would indeed be awkward (for both of us) but that does not change the fact of what is needed.

I hope you can work through your feelings so that you can provide help in the best way you know how.

I still don't really understand what feelings you are unsure about.

Hi,

I don't feel put out at all. I feel a sadness that I didn't know I could feel. I'm a Registered Nurse, but I have never seen anyone's body becoming so useless so insidiously. I hope that is not offending to anyone.

My brother-in-law is a good man. I'm glad that friends and family have the strength to care for him in anyway they can.

I think he is beyond embarrassment. He is grateful to all of us; partially because we allow my sister to keep working.

terrics

how long have you been a nurse? when you care for your patient I hope you have some sadnes for them and their family. you have to remember it could be you or your family in that bed. remember you have been taught the knowledge but compassion and caring comes from inside. as a older,more experince nurse I wish you the best. nursing is a calling,not just a job. I am now the pt. and to be honestI really don't like this side of the bed.

If you are a nurse, how is it that you have only been there twice to help your sister! As a caregiver, I have finally learned to take any help offered. If you offer more, I'm sure your sister would be more than happy for the help. Maybe instead of visiting, you could help your sister or give her a break.

If your brother in law is like my husband, he is not over the embarrassment at all. He just understands the necessity and, like everything with this disease, he just endures it.

Hi Terrics,

I hope your time with him leads to some good, happy things you can remember later. I assume your living a distance away and your work keep you from seeing all the changes as they occur, and, as he's the same generation as you are, there is the sadness for your sister and for him combined with perhaps being hit personally with our mortality and frailty? One of my dearest friends had that kind of grief whenever she visited me for quite some time. Also, my mother, an RN, had dementia, but as soon as she saw me move (lower limb onset), she insisted on being told what was wrong. And, she remembered what ALS is, so she grieved... Two minutes later, repeat. I guess what I'm suggesting is to try and figure out why exactly you are upset with your BILs condition and try not to be upset while you're with them... which would make it easier on your sister and on him. I admit, until my friend "got past" her crying whenever the elephant in the room (my condition) appeared, as well as my mother's meltdowns, it was very stressful. I hope I'm wrong, but I sense that maybe you're are trying to figure out yourself why this is so hard for you, so I'm tossing it in as one more idea.

I wish you the best, terrics, and hope your time together coming up is a time you can just know you're helping your sister, and also enjoy being with who they "are" now, not in a fake happy way, but a genuinely peaceful one.
Ann

Terrics... sounds to me like what you're feeling is apprehension. Which is legitimate! It's a lot harder to maintain that professional objectivity when the patient is someone you care about. Take a breath, hang in there... know you're doing something wonderful for both your sister and your brother in law, and you don't have to be perfect at it.. you just have to be there.

It takes a 4 hr. train ride and another hour to get to her house. and I have to take time off from work. OMG I have to work too.

terrics

OOPS I replied to the wrong post. Thank you Katie for really understanding. It is apprehension.

terrics

Saddness and empathy are not the same.