My mom is 77 and bedridden. Diagnosed with breast cancer metastasis to the spine and is on hospice. She is in very little pain and can roll for diaper changes. Her mind is great. It is me and my sister caring for her. I hired a caregiver to cover half my shift which is 6am to 6pm. I also care for my 6 month old granddaughter. The highlight of my life. I don’t have to, I want to. So please don’t suggest daycare. My sister works full time and does the nightshift. I feel so guilty because I don’t want to take care of mom. Financially it’s hurting us too. I’m so burnout. The diaper changes was such a challenge for me. I did conquer. My sister gets to go to her home after work for a couple of hours a day and is burnout also. Hospice comes in but you know that’s an hour a few days a week. Mom is doing so good you wouldn’t know she was sick. Blessing! Sometimes I think she is healthier than us. It’s just so exhausting with all the emotions and no control over her bowels and the constant do this and do that. I try to get her out of bed and into a chair a few times a week but even though she only weighs 120 lbs she feels Ike 200 lbs for some reason. She can’t stand at all. I’ve ask hospice about rehab to help her stand or put pressure on her legs to help us but we have to drop hospice to try and get rehab. I don’t know what to do. My sister and I are in our 50s and have no life. My mom could live bedridden for years and that’s all good but I don’t think we will make it that long. She’s actually seems to be getting better the hospice nurse says. We do everything for her. I’m there 6 hrs a day and also care for my grand baby 10 hrs a day which brightens her day. It’s just so hard. I have a husband also. Good as gold. He pays the daycare for mom so I’m don’t have to be there 12 hrs a day. I just want a life. We never get to spend time together go on vacation or garden anymore. Nursing home is out of the question. You just don’t know my mother. Somehow she has guilted my sister. I feel so guilty for not wanting to keep doing this and for my sister who doesn’t have a life either. We constantly cook clean and try to make her happy. It’s so exhausting. I walk outside to take my granddaughter to get sunshine and I’m constantly getting called back. Check my diaper I think I’m wet. My mom has no desire to occupy her time. She has tv computer books etc. she thinks it has to be someone in that room. I feel so guilty. All she says is this is a miserable existence. It’s constantly trying to keep her spirits up. It’s exhausting. Home care is so expensive. Understandably! Any advice or inspiration is appreciated. I’m scared me and my sister may go before mom. Selfish as it sounds we would like to enjoy life a little bit before it’s over. We’ve been keeping this pace for 14 months. We are with her 24 hrs. A day. So sorry this is so long. Needed desperately to vent. Forgive me!
Have you asked yourself why you feel you deserve such punishment? You can very well die before she does, because if she improves, hospice will be terminated and you'll be back to doctors and hospitals and desperate measures taken to prolong her life even more, in spite of cancer. So you and your sister can continue this nightmare until you're burned out to a crisp and your own health and well being is destroyed in the process.
Mother's who have healthy minds and hearts do not demand such servitude from their children. My husband and I have 7 kids between us and we'd END our own lives before asking or expecting such a thing from ANY of them. It would kill us to watch our kids being put thru such a soul sucking experience at our expense. Never, ever.
Homes can be sold or equity loans can be taken out to finance full time paid care by professional caregivers that come from an agency if mother is too stubborn to go into residential care. Killing her daughters and ruining to their lives is NOT her only option.
Sign up for some therapy so you can get help letting yourself off of this hook you and your mother think you deserve. You don't. Good luck.
Believe me when I say your mother is literally sucking the life out of you and your sister. Literally. You say you have no life, that's because you are living your mother's life. You put your life on a shelf somewhere, if too long it might dry up and expire.
Your mother may keep going for years, you or your sister may drop dead before your mother does.
If you want your life back, your mother has to have someone else care for her, either in home or in a facility. No other option.
You are a mother, would you do this to your children? Rob them of their lives?
You have a right to a life. Your grandchild deserves a Grandmother. If you and your sister are burnt out and get sick yourselves who will oversee your mom’s care?
You can oversee your mom’s care at a beautiful hospice facility. Or, a lovely nursing home, if there is one nearby.
Our state has compassionate care visiting times. Yours might be the same.
love and blessings....Liz
It is heartbreaking to watch a parent decline.
It’s exhausting emotionally and physically to be a caregiver.
It sounds like you are just about at the end of your rope.
So often, we feel as if we are the only ones to give the best care to our family members.
Of course, you are doing your best, but you are paying a high price for it.
You deserve to get proper rest to enjoy your beautiful grandchild.
I cared for my parents. There is no shame in needing help.
I also cared for my brother for a time. He started to require more care than I could manage.
He was not going to get well. He died peacefully in a facility.
Sadly, your mom will not get well either.
Please consider allowing others to care for your mom.
I strongly urge you to look into placement for your mom.
You and your sister can still monitor her care as we did for my brother.
Ask the hospice workers what facilities do they feel would be a good fit for your mom? Continue to provide hospice care for her in a facility.
Also ask to speak to a social worker. Hospice provides this service for the entire family.
They can help you during this entire process.
You can also ask hospice to speak to the chaplain.
Wishing you and your family all the best during this difficult and challenging time in your lives.
Keep us posted. We care.
I will keep you in my thoughts and prayers.
If I were terminally ill, the last place I would want to be would be cooped up at home with only one person to talk to. I think that a congregate setting would be a better situation for your mom because she would have more socialization and more distraction from her "miserable existence".
Choose wisely.
My mom is no where near your mom's condition, BUT she is also 77, lives with me and I LOVE watching my grandkids (11 and 14 mo), They do help my mom engage and gets her more active, etc.
Soooo, I really disagree that your mom can not go to a nursing home. She will not want to go and you really might not want to put her in one, in a perfect world. Our world is less than perfect though. You need to spend your time on your husband, kids and grandkids. At least most of it. A much smaller amount should be spent on your mom's care. It sounds like your mom could last a long time and you just can't keep up this pace for much longer. Your health needs to come first.
I think she can still be on hospice while in a facility. Think about it. It would probably really be for the best for ALL of you.
I know how hard it will be. I dread the day I have to put my mom somewhere. Some days I think assisted living would be a god send but just do not have the heart to do it. But when it comes to the kind of hardcore caregiving you are doing, I just don't think I have the time or energy to do it. It's just too much.
Please let us know how you have gone with getting rid of the guilt (about not having a magic wand to come up with a perfect solution) and with making some changes (in getting more appropriate care for your mother). And ‘appropriate’ doesn’t include you or your sister burning out!
Lots of love from the other side of the world, Margaret xxx. Have courage!
Then, armed with more knowledge, have a good think. How much can you realistically, practically & healthily do. How much can your sister? Ask your Mother what she wants & factor that in. What does she really want from her life at this stage?
Hopefully this will all help to change the plan into one that suits ALL of you better.
Maybe a lot more home help? Or Mother goes into respite care for a month so you both get a break, then you can continue. Or maybe Mother moves into care full-time.
Sometimes regular residential respite care is enough to reduce caregiver stress which enables homecare to work for longer. But sometimes it is just not enough.
Sometimes adult children are killing themselves to keep a parent in their home, when other alternatives are available & acceptable. Maybe what the elder really wants is a safe place, a cosy room, some smiling faces & company & a few of their favorite things around them.
Home can be a feeling, not just a place.
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