Hi everyone–
I think I’ve just been entered into the Caregiving Olympics. Not as the speed skater or some other super onerous endurance event, but maybe more like curling? Curling is more lightweight, more bizarre. Dunno.
My mom is now in Hospice. In my home. With me as the primary caregiver.
!!!
I have been so angry–about this whole thing. Feeling like a slave, or a roach in a roach motel. I am OK with this–at the moment.
So–the reason I am in the Olympics now is:
-I do the bedpan
-I do catheter care
-plus a zillion more meds
-plus help her move around
-plus, they say I have to (or someone has to) be with her at all times. (Goodbye Mom’s group, goodbye grocery shopping, goodbye life and semblance of ‘free’ time)
And–the reason I’m not a speed skater or something super onerous–is because I know many caregivers have a much tougher row to hoe. Like if I had to do IV stuff. Or syringes. Or insulin. Or diapers. Or seizures.
All mom’s meds are sublingual, oral–and if not possible–rectal. Eeek. I haven’t gotten over being freaked out about helping mom with light bathing, catheter care, the bedpan and anything involving the word ‘rectal’. Yes, I do this stuff all day long with my 10-month old son and my 3rd and 4th dogs. None of that freaks me out. I think it’s because it’s my MOM, in the deferential way that a child is to a parent, and probably also due to the fact that I have had a difficult time in our relationship for, oh, say, the last 40 years. (see my earlier posts {rants?}).
So–yes. In our gallows humor, my husband says the ‘Curling’ reference fits, because it’s my job to smooth out the bumps and clear the path for the inevitable.
And, yes, I’m OK with all this, for now, because it seems the most dignified, most respectful, most caring, least invasive way for her to be right now in the severe stage of COPD that she’s in. Neither I, or anyone of mom’s siblings, could bear the thought of her being ‘rehabilitated’ in Skilled Nursing. It would’ve been an hour away and she would’ve had to share her room with 4 people. She would’ve been miserable. Mom’s never been one for exercise, physical therapy, wellness. She’s always been like “Gimme the drugs and don’t bug me.” with an attention span of about 5 minutes for any one particular conversation. Hubub and cacaphony bug her. So–all of us who’ve known her her entire life, and who’ve watched our elders die of this same disease, said, unilaterally–NO. No, she would not want that if she were coherent.
So–it’s for the best.
BUT–OMFG, I didn’t realize the limitations of Hospice and that it didn’t include expense of additional home health services. Naievely, I thought she would be in a facility, and it would also be paid for! Nope. So–I’m trying to go it alone. Until she’s signed up and recieving Medicaid. OMFG. I’m slightly freaked out about the additional constraints and new responsibilities.
My family members acknowledge–it’s a lot. They empathize (but, none have offered to sit in for me! — And, I haven’t asked.)
Last night and today was our first day. It is OK. I think I can do it.
(When do I get to stop being a slave?)
I LOVE your comparison to this phase of caregiving to curling. What a great way to hone in on what your purpose and role is. (Your hubby is terrific.
) I hear some peace in your words and I hope this is true. If you do feel a bit of peace, you’ve earned it. This is important work you do, not just for your mom, but for yourself. This is another step toward the healing you’ve been reaching for. Wishing you just this (peace and healing). Thanks so much for the update. XXOO
I’m new to this,Idon’t know you and I don’t know all the history. I found this page as I was looking for anything I could find to help me with the care of my mother. So sorry your mother is not well but so proud of your choice to care for her. Do it proudly and lovingly there is no greater gift than the one you are giving her. You are not a slave you are a daughter,a good one. Take pride in that fact and love your mother with all your heart. We only get one and they are so precious I only wish I could have my mama home with me. Please don’t waste time with past pain, this is the moment you have live it well.