Caring for my mother, alone, all day-five days a week

jujubees1983 · April 2014

My mom was diagnosed with pancreatic cancer in 2011. It was considered to be found early and easier to treat. She's fought hard, through two different cancer treatment centers. One local and the other was Cancer Treatment Centers of America. I had only just moved to Seattle, WA 6-9 months before she was diagnosed so I stayed there. She had chemo and radiation for a year or so before we went to CTCA for a second opinion and different treatment.

Recently, a month ago, she took a serious turn for the worse. Her liver started to fail. She was jaundice. She can't walk alone, can't be alone and take care of herself. My dad was here the first two weeks after that but he had to go back to work to save his job. I had taken FMLA to come home, from a job I've held for six years. Since my dad is back to work the responsibility of caring for my mother has fallen on me. She doesn't sleep well. She's lost so much weight that she can't get comfortabe because of the lack of cushion on her joints. I either stay up until 1:30-2 am and then try to sleep until my dad leaves for work at 6am, then I'm woken up a couple hours later. Her reasons for waking me up range from needing help sitting up to needing a drink to needing bathroom or pain pills. I can't lift her alone. I have the hardest time getting her off the toilet. Getting her bathed doesn't really happen. Between me and my dad it's difficult. It hurts my heart to see her as frail as she is and I feel like I'm gonna break her.

She doesn't eat much. She'll ask me, frequently, to go get this or that. I feel like I spend most of my time at the local supermarket getting stuff she isn't even going to eat.

I miss my life in Seattle. I made the mistake of telling my family that I was thinking about moving home and now I've changed my mind. I also feel like I'd be letting my dad down if I left him alone to take care of her but I'm going cuckoo. My mom refuses to let us call hospice. She doesn't understand that they help with comfort and pain management, not necessarily death sentences.

Am I selfish for wanting my life back? For wanting my independence? I realize that I probably sound like a whiney brat but I don't know what else to do.

Ladylacy · April 2014

Your Mother

I'm sorry to hear about your mother. As far as hospice, my husband has been on hospice since September 2013 and is doing fair. He has been fighting a first primary, then a rare second primary cancer with a spread to his lungs. Hospice does not mean you are near death. We have been told that some stay on hospice for years and even have been discharged but can go back on it when needed. It sounds like your mother needs more help than you or your Dad can give her. Maybe her doctors could talk her into hospice. There is in-home hospice and in-hospice. In-hospice, I believe they can only have 6 months. My husband is on in-home hospice. A nurse comes by once a week to check him and talk with us to see how everything is going. They do provide his pain medication and he has been on a feeding tube since May 2012 so they provide his nutrition. Right now I don't need any other help as he is able to do for himself but I know that day is coming soon. While I'm not sure what hospice provides,I believe an aide comes in and helps out for a period of time a couple of times a week.

It sounds like your mother could use a walker to help her get around. I hope you and your Dad can talk her into having hospice come. Maybe they could come by and just explain to her what they do. Her doctor would have to submit an order and many insurances cover hospice. What about a hospital bed. That is something hospice provides also. Talk with her doctor and see what he advises.

soul-mate · May 2014

Priorities?

Sorry about your mother and I wish all the best. You are doing a great job ,and to think your selfish in your own questions is nowhere to go. You are young and doing what many would walk away. I have to admire taking care of your mom but don't forget about yourself as a tired and run down caregiver only makes things harder to do. Please ask cancer center for a list of resources available. Try to convince mom to accept hospice or palliative support as once you are in the support of these services the care will be managable. The words hospice,palliatiave has a stigma attached to it, but believe me that people live a longer time with the support available. Take care.

SOUL-MATE

Meowycat · May 2014

Huggies

Dear jujubees1983,

My heart just breaks for you all and the situation. My mother has advanced mestasised colon cancer. She has been fighting and doing chemo. I left my job in January of 2014 because my poor father who is elderly could not take care of her alone.

Caregiving is a hard job. The stress it creates on one person soons starts to take it's toll whether it is emotionally/physically or both. My mom can't do anything for herself. I understand those time when you are staying up late and getting three to four hours of sleep if you are lucky. Making food and then throwing it out, bathroom runs, pain mgmt, etc. There are times when I feel like my Dad and I are on call 24 hours a day. Emotionally its hard because all you hear about is pain, distress and you can't fix it. I am not complaining. It is what it is. I have chosen to stay out of work for as long as I can to help my Dad out. I moved back home. You sound like a good person who is just starting to emotionally break down. I have been there many times. Make sure that when your Dad is not at work you go out for at least an hour here and there to get some fresh air or put on some music and tune things out. My outlet is concerts.

Your mom's refusal for hospice is probably because she is scared. "hospice" and "palliative care" for most people means they are close to the end of life, even if that is not the case. You have to understand that only she knows what she is emotionally going through. Just as it's hard on you, imagine her knowing things can deteriorate quickly for herself. Super scary.

Perhaps you can spin it this way to her. That it would be beneficial to YOU and a big help if you could get an aide, nurse, etc to help YOU out. That it does not have to be forever, but just until she gets stronger. In our case we have all agreed that when things get real bad we will opt for Home Hospice. Only if we can not take care of her medically would we put her at a hospice center.

Speak to your Dad. Always remember that you have to be true to yourself. There is no shame in needing help. No shame in asking for help. Also whatever decisions you make, be sure that you will not have doubt or end up feeling guilty later on. No caregiver needs that emotional burden.

Pick my brain if you wish. I know what I know about supplemental stuff in terms of foods. Pain mgmt, etc.

If you have insurance, get yourself a full checkup. Make sure you are ok. I have ulcerative colitis so the stress makes my body shut down sometimes. Drink lots of fluids and make sure you eat. Easier said than done, I know.

Hope this helped.

Hang in there!

Nellie

jujubees1983 · May 2014

Meowycat said:
Huggies
Dear jujubees1983,

My heart just breaks for you all and the situation. My mother has advanced mestasised colon cancer. She has been fighting and doing chemo. I left my job in January of 2014 because my poor father who is elderly could not take care of her alone.

Caregiving is a hard job. The stress it creates on one person soons starts to take it's toll whether it is emotionally/physically or both. My mom can't do anything for herself. I understand those time when you are staying up late and getting three to four hours of sleep if you are lucky. Making food and then throwing it out, bathroom runs, pain mgmt, etc. There are times when I feel like my Dad and I are on call 24 hours a day. Emotionally its hard because all you hear about is pain, distress and you can't fix it. I am not complaining. It is what it is. I have chosen to stay out of work for as long as I can to help my Dad out. I moved back home. You sound like a good person who is just starting to emotionally break down. I have been there many times. Make sure that when your Dad is not at work you go out for at least an hour here and there to get some fresh air or put on some music and tune things out. My outlet is concerts.

Your mom's refusal for hospice is probably because she is scared. "hospice" and "palliative care" for most people means they are close to the end of life, even if that is not the case. You have to understand that only she knows what she is emotionally going through. Just as it's hard on you, imagine her knowing things can deteriorate quickly for herself. Super scary.

Perhaps you can spin it this way to her. That it would be beneficial to YOU and a big help if you could get an aide, nurse, etc to help YOU out. That it does not have to be forever, but just until she gets stronger. In our case we have all agreed that when things get real bad we will opt for Home Hospice. Only if we can not take care of her medically would we put her at a hospice center.

Speak to your Dad. Always remember that you have to be true to yourself. There is no shame in needing help. No shame in asking for help. Also whatever decisions you make, be sure that you will not have doubt or end up feeling guilty later on. No caregiver needs that emotional burden.

Pick my brain if you wish. I know what I know about supplemental stuff in terms of foods. Pain mgmt, etc.

If you have insurance, get yourself a full checkup. Make sure you are ok. I have ulcerative colitis so the stress makes my body shut down sometimes. Drink lots of fluids and make sure you eat. Easier said than done, I know.

Hope this helped.

Hang in there!

Nellie

You hit the nail on the head!

"Making food and then throwing it out, bathroom runs, pain mgmt, etc...."

Thank you, You really hit the nail on the head with that. Today was a hard day. I was up at 3am until 3:30am and then mom woke me up around 7am-ish to go to the bathroom, about and hour after my dad left for work. (It's been increasingly more difficult for me to get her to the bathroom alone....) While getting her off the bed I noticed that she was pretty weak and knew something was gonna happen. As I was walking her she couldn't really step up a small step in the house and I almost dropped her. I ended up having to call my dad at work to come home, luckily he works 10-15 minutes away, and help her up. I've noticed her breathing is getting harder and her coloring is off. I talked to my sister, who is an oncoloy RN, and she agrees with home care. I tried, once again, to talk to my dad about talking to my mom again and he said she's still adamently refusing. She won't even agree to go see her oncologist for a check-up or to get the fluid drained off her stomach, from the liver issue.

If I could talk them into getting home health care then I could make my living situation decision easier. I don't want my dad to be left dealing with it all alone but I don't want to jeopardize a job that I've held for so long by not being able to transfer. I'd ask her closest cousin, who works 2nd shift nearby, to come sit with her during the day but that woman was stealing my mom's pain meds last year. We had to start hiding them whenever she showed up.

Thank you for your kind words, they helped a lot.

Julie

nempark · May 2014

Hang in there

Dear Julie: I was recently a caregiver, fortunately the last days were in the hospital. I can only imagine what yu are going through, but hang in there Julie, she probably dosen't have much longer, don't mean to sound cruel, but from what you describe of her condition she will eventually give up and would have no choice but to get hospice. Dad should also know better and insist that she goes to hospice. Hang in there Julie, you have a long life ahead of you and you will get back to normal don't leave her now talk to your employer and ask for family leave. If you leave her Julie, you will have a lot of regrets and would not be able to forgive yourself for a long time. By the way, you are not a brat and you are not selfish!!!!!Caregivers suffer and hurt a lot. Love her and pamper her, tell her how much you love her.

Caring for my mother, alone, all day-five days a week

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