So sorry writer. (((Writer)))

Thanks everyone.

My mom is home now. We're going to see her regular doctor tomorrow to get a referral for a G.I. specialist and an oncologist. I'm guessing it may be a week or so before we have any definitive answers. But for now, she's home and resting comfortably. I'll feel a lot better when I know for sure what we're dealing with and what our options are. I've never dealt well with uncertainty.

Glad to hear she is comfortable. Good luck on this journey.

Writer, I'm so sorry to hear this. I'm glad she's had some quality time with you and your kids, and is comfortable now.

Radio Clip About caring for an aging parent.
Radio Clip on Taking Care of an Aging Parent

Writer,

How are you doing? Thoughts are with you.

Hi everyone.

Thank you for your concern.

Just a quick update: My mom is at a local university hospital that has a very well-regarded oncology department. They are running a variety of tests including biopsies and CT scans. We should know more in a few days. Right now, the tumors in her lymph nodes are causing the most issues, since they causing her kidneys to not function correctly. But her labs looked a little better today. Overall, she's in good spirits and they are giving her something to help with the pain.

It's been an exhausting couple of days. I didn't even get home from the hospital until 3 a.m. this morning and then had to go back around noon to take a CD of the CT scan she had last week at the other hospital to the new hospital. I am beyond exhausted and feeling quite overwhelmed, but hanging in there.

All you can do is keep putting one foot ahead of the other and smile.

The results of the biopsy aren't officially back yet, but the oncologist is fairly certain it is cancer. It's looking like they will be doing 5 weeks of radiation, 5 times a week. After the radiation, she will have 2 sessions of chemo, and I think each session consists of 5 treatments.

Also, they inserted two tubes into her kidneys to help drain them until the radiation/chemo can hopefully ease the compression on them and they can start functioning on their own again. The tubes will probably stay in place for several months.

We are going over the hospital this afternoon to learn how to flush and care for the kidney tubes. Sounds like they will have to be flushed morning and night (by someone other than my mom since they are on her back and she can't reach) and the bags will have to be emptied/changed several times a day. She should be coming home tomorrow.

One question I have is how do I deal with UA time when I probably won't be able to leave my mother alone for very long at a time for at least the next several months? Since there are other people in the house who can help, her insurance likely won't pay for in-home care at this point. I don't want my marriage to completely fall apart over the next few months, since it's not going so well as it is. I've barely seen my husband this week at all. We aren't getting any UA time. We're hardly ever even in the same place at the same time at all and I don't see much of a solution for that for the time being.

I'd love some advice from anyone who has had to deal with a seriously ill parent and still juggle all of the other things in life - UA time, family time, domestic/work responsibilities. I'm feeling very overwhelmed at the moment.

Look for a council of aging in your area. ( Or something similarly named). They might be able help or at least give you some names of people. Is your mom on medicare? Would she qualify for Medicaid? ( I'm not sure how many assets/ how much in the bank she personally has.) Medicare provided my dad with in home health and provided a woman to sit with him and do some light housework/cook meals. That only lasted for a short time, but then we were able to hire the lady ourselves. Her rates were reasonable and less than what we paid through the home health since she didn't have overhead.

As far as multitasking... I didn't even know about MB back then and my dad wasn't quite as seriously ill as your mom. So he could actually watch my kids while we went out as my oldest could help out grandpa and yet he could make sure they didn't get into mischief. I homeschooled in doctor's offices, hospitals while getting tests done, physical therapy offices. As he got stable, I set boundaries for how often/when I took care of him. ( Which may not be possible in your case.) So I had a set day that was our take him to Walmart day.

I'm looking at the ages of your children, and I'm sorry, but I don't remember your back story and if they are in the area or responsible. But if possible, have a meeting with them and tell them you really need their help. At their age, they should be able to . What could fit into their lives? Could each of them take one evening a week to give you a break? ( I see you have 4 children over 18) Do you have any siblings that might come for a long weekend so that you and your husband could get away once a month? Do you belong to a church? Our church has helped out people taking care of a relative like this. They have brought in meals, had someone sit with the loved one, etc.

The bottom line is that YOU cannot do it all, writer. I wish I had asked for more help instead of trying to be superwoman. It is funny because a couple of weeks ago, my husband apologized for being such a jerk while my dad was living with us. He told me he should have been more help to me and more supportive. But it is just a tough situation. I hated being in that position. So if at all possible, just share your heart with your husband and tell him you don't want to neglect him at this time but that you are also feeling SO overwhelmed. Can he help you come up with some solutions that you can both be happy with.

My prayers are with you!!! Been there, done that and it isn't easy.

Here it is.
Radio Clip of writer1's question

A lot has happened in the past few weeks.

The biopsy revealed that my mom has cervical cancer. A PET scan showed it has spread to much nearby tissue (rectum, uterus, possibly bladder) as well as nearby and distant lymph nodes, and lungs. This makes it Stage lV, which is considered incurable.

Been doing lots of tests and preparation for palliative treatment. She should start radiation and chemo next week. The radiation will be daily for 5 1/2 weeks and chemo will be weekly for as long as it is working and her body can tolerate it.

The prognosis is she probably has about a year.

I guess we're handling it about as well as can be expected. She doesn't do much other than sleep and watch TV. She is having to take percocet for pain every 4 hours around the clock. She doesn't eat much at all. The hope is that the radiation will help decrease the tumors, and therefore the pain, and improve her quality of life.

What I'm trying to figure out at this point is how to cope with her illness and all of the other things going on at the same time. This is definitely putting a strain on my M than I'm not sure it can withstand. We still get some UA time, thanks to my sons, but one will be leaving for a job in CO soon. I imagine our UA time will suffer even more as my mother's condition worsens. I'm also starting to feel a lot of resentment since the bulk of the responsibilities seem to be falling on me. I've tried to talk to my H about this, but it usually ends up in an argument. I just don't get the feeling that he wants to hear anything I have to say. Any and all complaints get an immediate negative reaction. I spend so much time now trying to figure out how to phrase something in a way that won't make him defensive that I rarely get around to saying anything at all, which obviously isn't working and is increasing my level of resentment.

I'm just plain worn out and exhausted.

writer, I'm so sorry to hear the terrible news about your mother.

I can tell that you have a miserable year ahead. Have you looked into health services that you can claim, such as visiting nurses? Over here I believe there would be some help offered by the NHS with personal care. What about with your insurance?

What specifically have you complained to your H about, and what arguments does he make to rebuff the complaints?

Thank you SC.

Right now, we have a nurse coming over once a week to check on my mom and see how she's doing. I'm not sure what's available beyond that. We haven't gotten that far in the process though. I do know someone else who went through this recently though, and they said they eventually had to hire a caregiver on their own, because Medicare/Insurance wouldn't pay for it. It cost them about $150 a day, and they had to provide a room for the caregiver to sleep in (since their loved one needed 24/7 care). Not sure how we would manage that on either count.

Mostly I have complained to my H about not having enough help around the house. He will help when I specifically ask him to, tell him what to do, and how to do it. My main complaint is that he doesn't take any initiative. An example: Last week, my mom had a late doctor's appointment and we didn't get home until almost 5:30. When we got back, my H and both sons were sitting on their computers and no one had given any thought at all to what we were going to do for dinner. It would have been nice to come home and actually find someone fixing something. It wasn't something I knew was going to happen ahead of time, since the appointment was at 3 and lasted much longer than we originally anticipated. We didn't discuss it, but it would have made some huge LB deposits if my H had noticed the time, realized we would need to eat when we got home, and started making something.

The main problem is, I am primarily responsible for our 5-year-old, everything having to do with my mom's care, 90% of the housework, and making sure everyone eats everyday. When I tell my H I need help, he says he's willing to help more, but then when it comes down to it, it often doesn't happen. It was fine when he worked and I just stayed home and took care of the house and DD. But now, with my mom's illness thrown into the mix, it isn't working anymore. She has at least 2-3 doctor's appointments every week, and once she starts radiation/chemo, it will become daily. Plus, I have to change the dressings where her kidney tubes are and flush the tubes everyday. I have to help her with most everything. She can still take a shower and dress herself, but that's about it. It's overwhelming and I'm having a difficult time adapting.

Have checked to see if there is federal or state funding to assist with your mom?

My wife has a high need for DS. I asked her to write a specific list on what would be the most important in terms of helping her out. And if there is something else she needs help with on a specific day, let me know.

I think it'd be easier to do that than just assume he's going to do something and be disappointed that he didn't volunteer to do something.

I don't like vague 'I need help with cleaning' stuff. I want a checklist. Most guys are this way

Thanks KT. I know this, and it's true about my H as well.

I'm just trying to figure out how to make it happen when our lives are so unpredictable right now. Like with the dinner thing, I had no way of knowing we were going to be gone that long. One doctor sent us to another doctor who sent us to the lab, so we were running all over the place. I was driving much of the time, or in doctor's offices where my ability to text/call was limited. I did try to text him a few times, but our communication wasn't great.

I wake up every morning and I have no idea what the day will hold. Many days, we don't have an appointment and I think I will be able to do stuff, only to get a call from a doctor saying we need to go here and do this or that. It's crazy. Maybe things will settle down once the treatments get started and we have a set routine. But right now, I don't know how to plan for anything at all because I never know what I'm going to have to do from one moment to the next. I would love to give my husband a checklist, but I'm not sure how to know what to put on it if I don't even know myself what I'm going to have to do that day.

Hospice may be an option for your mom.

one suggestion, ask to talk to a social worker at the hospital she is having her treatments at to find out what the options for help are.

Hospice is a great idea, but if she is not considered to be a candidate for that (usually means life expectancy less than 6 months), ask about palliative care.

Also, with your husband, you might want to concentrate on having some positive time together. He might be overwhelmed by what is happening to your family, and just react in a way that seems not helpful to you. You need some time focused on each other, which I realize is a challenge given circumstances.

My thoughts are with you.

Hi writer,

I'm so sorry you are going through this. When I was taking care of my dad my kids were 3, 7 and 10 when it started and 7, 11 and 14 when he died. My husband was working 80 hour weeks, though and he wasn't available to help. Plus, I was homeschooling while running around to physical therapists, eventually cancer doctors, pulmonary doctors, etc. I trained my children to help. My oldest one cooked dinners many nights. Once I had started dinner and I had to leave and he finished it. I trained them to do the housework. It wasn't until the very last year that my older two finally caught on and started helping me without being asked. But most of the time I would be like, OK guys you are sitting there playing and running around while I'm struggling getting the wheelchair out of the car and getting grandpa out and getting out his clothes.. You need to LOOK and see and do things without being asked. They finally started doing that but it took over 3 years of talking to them. Now your boys are A LOT older. I would sit your boys down and tell them that you really need some help. Delegate the cooking to them several days a week. If they have never cooked before, then start with really easy recipes or buy a big frozen lasagna that they can put into oven. Delegate as much of the regular housework and possibly care of the 5yo as possible. You be responsible for your mom's care.

Do you belong to a church? I wish I had not tried to be superwoman and asked for their help during this time. I know they would have brought meals. And I know about two different instances where some men had some SERIOUS health issues and needed 34/7 care and our church provided for the wife to have a sitter a couple of days a week, so she could leave the house. But no one can help you if they don't know.

As far as UA and marriage issues, I'll let the vets here address that. We hadn't ever heard of MB at that point and ours was nonexistent. As I said, my husband just recently apologized to me for not helping me at all during this period. He was just so overwhelmed and didn't want my dad in the house, but like me saw no other option available. Luckily for me he only lived with us for 7 months until we could get him stabilized and found him a little rental house. For me it was chronic health issues not palliative care. But I'm not sure how you deal with the resentment that comes with a parent who is hard to live with anyway getting to the end of life and being stuck taking care of them. There is anger at them for their personality and behavior that either caused the illness or made it a lot worse. There is anger at God for putting this mess on your doorstep when you have enough on your plate and anger at your husband ( though for me it was mixed with sympathy as well) for making you do this all by yourself. You feel like the world deserted you. ( Or at least I did..)

So lots of sympathy and if you lived anywhere close, I'd be driving up to help!!! You are in my prayers!!

Thank you tiredwife.

I don't have a lot of time to respond to everything right now.

But your quote above struck a nerve. This is exactly how I feel. And most of the time, I feel like crap for feeling that way.

How can I possibly resent my mother now that she's dying? What kind of person does that make me? But I do. She has always been a difficult, unpleasant, negative influence in my life. It makes me feel so petty and horrible that all of that still bothers me, and that I have to take care of her everyday and try not to think about that. But I do still think about it. The resentment is still there. The cancer hasn't diminished it. I feel like it should have, like I should be able to forgive all of that and enjoy what time we have left with her, but how do I do that when I've never enjoyed being around her?