Final weeks with Mom; so lost, mad, confused, lonely. Please help me hold on...
My Mom is in her final weeks with Stage IV breast cancer-- she is 72, I am 44. I lost my Dad to prostate cancer in 2003-- he was 63, I was 31. To say I HATE cancer is about the understatement of the century. But here we are-- my Mom is probably 88 lbs; is on hospice (despite this being a bit of a battle with her); has swollen legs & feet that weep & a distended stomach (due to liver failure); is bald yet you can see several small brain tumors on her head; sleeps about 20 hours/day (although she has trouble getting comfortable since she's so thin & her bones jut out so much) & is oftentimes depressed or tired, at times angry, frustrated, etc. When I'm at her 3400 sf+ house I'm given a huge list of chores to do (wash dishes, make meals, go get groceries, vacuum floors, clean hardwood floors, make bed(s), strip bed(s), water plants/trees, dust, do laundry, feed dog/exercise dog) & of the rare times she's awake & coherent our talks are short & always sad/tearful. I live 1.5 hours away & between myself & my brother (who lives 20 minutes away) & her sister, who just flew out from Hawaii last week, we're caring for her at home (with her sister doing the bulk of the care now since she's living there). I'm at Mom's house 2-4 days/week & call daily if not several times a day when I'm not there (she rarely answers or returns my - or anyone's - calls). I work full-time, have a 7 year-old son & husband & am finding it near impossible to juggle her/her needs & the necessity of being away from my family to care for her with some slice of my old/normal life. Our fridge is near empty, house is a pig-sty, laundry piles up, bills are barely getting paid on time & I'm doing a 1/2-**** job at work, despite loving what I do. I fight each day to maintain control & not get undeservedly upset with my child or lash out at my husband but, there is a part of me, admittedly, that's 'mad at the world'.
I feel guilty always, every day-- like I'm never doing enough for my Mom or wondering if I'm "supposed" to quit my job & move in with her & dedicate all my time to care-taking her, rather than still continuing to work, be with my family, see friends now & again, etc. Truth is, I don't want to be there 24/7; it's exhausting & intense & sad & she's down & gets angry if we tweak a pillow or mattress the wrong way & cause her discomfort... I'm sure I'm a horrendous person for admitting all this. Funny thing is, all her close friends are retired with little to do & when I approached them about perhaps chipping in 1 day/week of care they all said no-- but these same people will judge me & my brother & our presence (or their perceived lack of) at her home.
I don't know what to do. I don't know what I'm 'supposed' to do. I don't know if I'm making mistakes & they'll be ones I'll regret or if I'm being smart & exercising some ounce of self-preservation by allowing some time away to run my regular life. It's worth noting that I offered -- many, MANY times for my Mom to move into the guest bedroom at my home so I could, indeed, take care of her 24/7 & still do what I need to do, but she refused. It's also worth noting that her health is so bad I think she should be in a hospital with proper beds, toilets, medical professionals but she's chosen to be at home - has no "long term health insurance"/never made or discussed her desired long term plan - so this has fallen at mine & my brother's feet.
I want to breathe & feel more in control of this difficult period in my life. I want to stop talking with every person about her cancer, the latest changes & updates on her health-- & I want to know how others navigated all this... I'm so lost, so lonely & consumed with guilt. Any stories, advice, suggestions deeply appreciated.
Comments
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You
I am so sorry to hear about your mother, but remember in all of this as a caregiver you are important to and must take care of yourelf.
My mother lived with me the last two years of her life and while I was still working my husband cared for her. In her last few weeks of life, I was able to take family leave so I was with her. She was on in-home hospice. She always had this fear of dying alone like her parents did in the hospital and she didn't want that.
Guilt plays a big part I know that from experience. I would get mad at times and I would tell my husband I wasn't mad at him that I was mad at the situation. Now I blame myself for the times I got mad but patience wears thin after a while and it is hard to control yourself. I did everything for him the last 6-8 weeks of his life. Up until that time he could do for himself but the anxiety and worrying about when it is going to happen plays on everyone involved. Thankfully our nurse and I could tell the last week that his time was short and 2 of our sons were able to get home and be with him at the end.
My husband passed 11 months ago from cancer and he was on in-home hospice. I was told and did utilize some of the extra care that hospice provides and I am assuming that your mother is on Medicare and in-home hospice offers 24 hour nursing assistance. We were offered that but I really didn't want all the strangers coming into my home so I didn't take advantage of it. In-patient hospice was only offered the last 2 weeks of my husband's life and he didn't want that and neither did I. Check with your hospice and see what they offer and utilize it because it would be of benefit to you and your Aunt. You can't be expected to do it all with having your own family, a job and not living that close by and I'm sure your mother wouldn't want that.
Wishing everyone peace and comfort.
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I know
The "supposed tos" are hard. If you're a parent, you know what you're supposed to do for your child. You (hopefully) know what you're supposed to do at your job. When the roles are reversed and you're dealing with a parent who is ill but still well enough to make decisions about their care it is so confusing.
But cut yourself some slack. You're doing the best you can which means that every decision you make right now is the right one.
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