Advice on Caring for Mother-n-law with Stage 4 Ampullary Cancer

[luv2bake]

Hello all and thank you to all who share their wonderful stories,

After spending much time reading and learning from others stories, I will now post my own now because I'm in need of advice.

I am about to start my 2nd year in my 2 year RN program in a couple of weeks. I have only been married a year. I started my RN program last fall. Last year during my first semester, my husband was laid off at the end of the year. Shortly after, we found out on Christmas that his mother has stage 4 Ampullary cancer. It had spread in her body. Surgery was not an option. Chemo would only be to stabilize the cancer. She was given 3-6 months, tops a year. She began chemo in February. Since then, she is now on the third type of treatment because the others weren't very effective.

Meanwhile, my husband took a job an hour and a half away because there were no jobs for him where we live. He would stay with his mom near his job and come home on the weekend. In May my husband was diagnosed with a rare skin disease called Pemphigus Vulgaris which is a skin disease where your skin thinks a certain protein is foreign to it and attacks itself. He is doing much better but now on a ton of medication.

My mother-n-law is now having difficulties where she lives and has asked to come live with us. I just found this news out yesterday. I am concerned for several reasons. She is not doing well and I see her slowly declining. It is heart breaking. We live in a one bedroom apartment and now we are looking into a 2 bedroom. I am about to start my third semester of nursing school soon. My husband only comes home on the weekend and I will be the one looking after his mother during the week.

What should I expect caring for someone in the 4th stage of cancer? Do they need someone to be looking after them all the time? What signs or symptoms should I look for that show her cancer is progressing? She has already slowed down tremendously. She is always tired, has nausea and vomiting sometimes, fevers here and there, her appetite has decreased quite a bit, and she sleeps all day. How can you have any idea of how long these symptoms will last? What other symptoms may show her worsening?

She doesn't want to do things that can help her like take tylenol or do her breathing treatment. What can I do at home to make her most comfortable? Do you think it will be possible to look after someone in her condition while going to nursing school? How will it be when things start to get really bad? I know it is going to be extremely rough, however, I just want to know more less what to expect so I can prepare myself. The chemo doesn't seem to be working and we are already in the 8 month since she was diagnosed.

Needless to say, it has been a rough first year of marriage.

ANY and ALL advice with how to deal with my situation would be extremely helpful. I want to be successful in nursing school, but this is family which comes first. Thank you.

[tex42cares]

Wow .. Huge Hugs for You !!!!!My First question is ..Has Hospice got involved yet?

[luv2bake]

Yes, hospice is involved at her home and she has a team. Her hospice nurse said she can transfer everything to where we live and get a new team to work with. She is planing to call her hospice nurse tomorrow to let her know we agreed to have her live with us.

[tyvin, BSN, RN]

Be brave; let her go with love and honor. This is a very private and special time for everyone involved. Hospice should be able to show you everything you need to know to take care of her.

You'll be able to study ... sounds like she's coming to go home. Do you really have to move? You could set her up in the front room in a hospital bed ... it's just that moving right now seems extremely hectic. Is she walking or is she bed bound?

It may be heart breaking but you've got to look her in the eyes and help her on this most important journey of her life. Your husband needs you at this time and so does your mother-in-law; be strong future nurse. I will think of you and your family.

[luv2bake]

I don't know if she is confirmed for a terminal end soon and I'm not sure what that means. I assume her time to go home soon as you also stated. I haven't spoken with her nurse yet. Today I have just been thinking of all options as we just learned of the news. She is still able to walk around on her own. I was thinking getting her a room of her own would give her a little privacy. However, it is an additional expense we would have to work out and she is getting weak. She is currently sleeping in living room on a futon. The futon is really comfortable.

It is hard to see her suffer physically, but the thing I am more concerned for is her pyschosocial needs. She has a lot of anger. It can be hard to deal with sometimes. I want to understand more how to help her with this part of the process. I'd like to see her go home peacefully. In your experience, have you found it possible to help your patients with this part? I can't help thinking of Integrity vs. Despair. I just want to understand all she is going through and help her cope with it.

[tyvin, BSN, RN]

The hospice team has a social worker; seek her/his advice. I have worked many years and helped many people cross over and only 1 time did the person not accept the situation.

Since there is anger present the social worker should be involved. That's what the team is for, to all work together to help her. It is absolutely possible to help her accept this. Seek the professional advice of the team.

[luv2bake]

Thank you Tyvin. After reading your reply, I think I will offer to call her nurse tomorrow and find out more information. It was helpful to hear about your experiences and advice. Thank you for your concerns as well.

Thank you also text42cares.

[DizzyLizzyNurse]

Having worked with Hospice a lot in LTC I'd second the idea of talking to your mil's hospice nurse. She'll be able to point you in the right direction.

I'd say anger is common. Don't let her abuse you or anything but expect it. Also keep in mind as a student having a family member go through this is much different than taking care of a person like this in a hospital. I just say this because people sometimes think they won't be able to handle being a nurse because it is so hard to see someone you know and love go through this. Wish you luck and Hospice itself will be able to answer your questions best!

[KtHospiceRNCM]

There are many things to consider and it won't be "easy" but if to go to your home is what she is asking for AND what you are comfortable with - then you can make it work. If getting a 2-bedroom will force you into a year long lease you aren't sure you can afford then stay in your 1-bedroom..

The reality is that there will most likely come a time when she may become heavily if not completely dependent on you/others for ADLs and may be mostly bed confined and/or require help with transfers.. if/when that time comes she really shouldn't be left home alone at all and hospice can't offer custodial care to stay with her. Some hospices offer 24/hr care for acute needs/changes in patient status to offer care and teaching to the family about how to care for the pt, but generally they can't leave their staff (or shouldn't) if there isn't a family caregiver present in the home also.

As for what to expect, it varies with everyone. I highly, highly recommend this little booklet. http://www.gonefrommysight.com/goneFromMySight.html

The hospice your mother-in-law is signed up with may offer this or something similar, (I have worked for Hospice for 6 years as a CNA, and now I'm starting as a LPN). This one specifically is a very easy read and isn't stuffed with complicated explanations or "big words".

It comes down to your comfort level. Anything can work, a bed can be placed in the living room area - I see that alot. And depending on her financial sources, LTC with hospice services is a nice combination.

Good luck and thoughts and prayers are sent your way! :redbeathe

[applewhitern, BSN, RN]

My son was diagnosed with stage 4 colon cancer at age 21. He died almost 2 years ago. Initially, the biggest thing I could do to help him was to drive him back and forth to his treatments. As time went on and he finally ended up on hospice, I had hospice place a hospital bed in my den, even tho I had plenty of room and 3 bedrooms. That way I could be in the kitchen, on the computer, whatever, and he would be right there, instead of "closed off" in a bedroom. Your MIL will sleep a lot more than you think, due to pain meds, etc., and you will have time to study. I would not leave her alone, esp. since she is angry and depressed. I couldn't leave my son alone because he would get out of bed and fall. I had a hard time finding someone to sit with him, and I ultimately quit work to take care of him. You will get thru this because you have to. Your MIL's needs are far greater than your's and your husbands right now. If money is an issue, remember you can claim her as a dependent on your income taxes, and you may qualify for food-stamps with her as a dependent. I said this in case your husband ends up having to quit work. Best wishes to you.

[leslie :-D]

this must feel like a huge responsibility to take on, and i applaud your desire to help your mil.

this ca is comparable to pancreatic ca, so do expect little to no appetite, wt loss, n/v (if not controlled) and likely, loss of continence.

get all the input/advice you can from hospice...

and take advantage of their staff who can help out around the house (hha), volunteers for companionship, feeding, sitter, etc.

talk to lic sw about family dynamics (you being alone w/no help), expenses, mood alterations (i.e., her anger), and keep in close contact with them (hospice).

at 8 months, i would think she will be passing on relatively soon.

her sleeping could be r/t meds, and/or the progression of the dying process.

a hospital bed is excellent for pt's comfort, positioning and bed mobility.

a bedside commode will serve useful, since her ambulation status will likely further deteriorate.

if she chooses to eat, soft, creamy foods are almost always palatable...yogurt, pudding, ice cream, or even popsicles broken up into bite-size pieces.

at this point, it really is about her being surrounding with love and support.

prayers for faith and ultimately peace, for mom and all loved ones involved.

leslie

[momto2j's]

We used home hospice services for my father. He had lymphoma and from the day we were told the cancer was back until he died was 15 days. We were fortunate that he had a nasty aggressive cancer. I don't think we could have done what we did for much longer. Hospice services vary greatly depending on the agency and often you are not in much of a situation where you can shop for services because of time constraints and needing services quickly.

Hospice became our one stop shop. They called for meds when we needed them, coordinated care with the doc, arranged supplies and equiptment. The nurse came once or twice a week. Other than that we were on our own. It was exhausting, and overwhelming. I took 8 weeks off of work and so did my mom. It took both of us to physically care for him. We had long term transdermal pain patches and used rectal suppositories for breakthrough pain. We turned him every 2 hours. We put the bed in the living room so we could "be around" all of the time. We rotated in shifts so one of us could get a little sleep but in the last 3 days there was no sleeping, it was all hands on deck.

You will have some down time to read, but in my experience, my brain did not process much during that down time. There is NO way if you are going to be the primary care giver you can continue to go to school. Even if she dies 2 weeks into the sememster, you will miss too much time. If you have family that can come and cover when your gone you have a chance. I would see if you can take the term off and then join the class behind you when they get to where you are.

I am sorry and your family is going through this. Use the social worker, go to your PCP and ask for meds to help you sleep if you need them. The last words my dad said to me were "I don't like your attitude" but I will never forget them!!!