Confused and fearful

[sandynd]

Hi everyone,

On February 13th, my mom was diagnosed with non-small cell lung cancer~stage IV. She is 81 years old. She tried a round of chemo but became so ill that she will not take any more. Part of the problem, discovered later, was that when they took a biopsy of the liver, it failed to heal and there was internal bleeding involved.

The cancer is in both lungs, some rib bones, her liver, right hip and femur for sure. Suspected to be elsewhere as well, but being extremely claustrophobic, mom has refused to undergo anymore CT scans or other tests involving tubes of any sort.

Her oncologist in Phoenix gave her 2-4 months to live. We are now back in ND ~ her state of birth ~ where she iis in an apartment building with three of her sisters. I have taken a "leave" from my job and am living with her, going home to tend to my job for a few days every couple weeks. My husband is also across the state, so I see him a couple times a month.

Her disease is definitely getting worse. She is now on round-the-clock pain meds otherwise she would not be functioning at all. She just had five radiation treatments to hopefully ease the pain in her hip and leg. The last couple days an increased amount of weezing when she breathes is apparent. She has always been a hard worker and continues to push herself as much as possible, but shortness of breath, exhaustion, and pain make it hard for her to do anything for very long.

This is such a struggle in so many ways. I love my mom dearly, and these moments are precious to both of us. Sometimes it all gets the better of us, however, and tempers flare. Needless to say, I feel terrible about this. My profession calls for me to help others going through rough times, yet I don't seem to have the compassion and patience with my own mom that I can give to others.

I don't know what to expect. I read in here of others diagnosed with stage iv cancer who have survived for quite awhile, however, mom's disease seems to be progressing quite rapidly. She has opted to just let it take its course naturally and live until she dies. We have talked of hospice, but she sees that as something she will want "when the time comes down the road." My thoughts are that she could receive the benefits of that program now if we were a part of it. I know, though, that she has to be ready for it in order to accept their help. Sometimes I think she is still in denial about what's happening; other times she is so matter of fact about the progress of the disease that I am amazed.

I am here because I need to be in touch with others who have walked this journey. There is no hope for a cure here ~ not even a slow-down of the disease. I just need a community who has been there so that I can vent, question, receive feedback ~ whatever!

Thanks for "listening" and hanging in there through this long post.

Blessings and peace,

[Caren]

Hi Sandy.

I am so sorry to hear that your poor mum and yourself are having to take this awful journey. My dad is also stage IV with Mets to the bones. He took one round of Chemo and was very ill and had a hospital stay as a result of that and so decided against further treatment. He is wheezing a lot now and has a persistent cough, but he refuses a CT scan.

All we can do is be there to hold their hands and guide them as best we can, while also not allowing our own thoughts and feelings to interfere with their wishes. It is a very hard juggling act.

I am fortunate enough to have my husband and children with me and my dad.

Don't worry too much about tempers flaring once in a while. While we love our parents dearly we are but human and going through life without an argument with mum or dad now and then just wouldn't be normal, would it?

Take Care now and post often, we are all in this together!!

Caren x

[kukla]

I am so sorry to hear about your mom. It's okay to feel stressed and to not always be able to be sympathetic. We are only human and you are giving up a lot right now to be with your mom. Maybe you can take some comfort in knowing that you are there for her and are sharing special times, even if they are somewhat sad.

Hospice can also help you. They have social workers for family. You may want to schedule an appointment for yourself.

It does sound pretty cool that your mom is with her sisters. I imagine you are hearing some great stories, even if you're hearing them again. That is part of the fabric of our families and is something that you can pass down to your kids and grandkids when you have them.

You are doing the right thing by being there with your mom. This community has helped me through a few rough moments so take advantage of it, especially when you need to vent.

Hugs and prayers coming your way.

[SandraL]

Hello again Sandy. I responded to your post in the intro section. I just wanted to add my prayers for you and your mom. That she can be as pain free as possible, that you are able to share good moments, and that she will gradually accept the help that hospice can provide. Many here have shared their positive experiences with hospice. Please don't forget to look after yourself in all of this as well. As a caregiver you can only do what you can do. The rest is up to the patient. Take care

Sandra

[ErinM]

Have you asked her if she would be willing to interview a couple of Hospice organizations so she can choose which one she would be interested in "when the time comes"? If it were me, I would try to find a way to get her to at least talk to them so they can tell her what all they can do for her. After talking to them, she may very well find that it is something she wants to go ahead and get involved with. My dad was so surprised by all the services they offered. Some people do have a misconception that hospice cannot do anything until the end. They do so much to provide emotional and physical support. My dad's death was very sudden and had we not gotten involved with hospice early, I don't know what I would have done. For example, on the day we signed up with them they brought emergency medications that they could open and use if the need became urgent without having to wait for their pharmacy to bring them out. They can create cocktails of medications that ordinary pharmacies cannot make. My dad could not get his nausea under control at all from his first chemo treatment. After six months of dealing with it, hospice had it under control in 2 days.

Obviously, I am very much an advocate for at least interviewing and choosing a hospice before you need them. At least you will know their policies and know what number to call later when you need it but would rather be focused on spending time together than finding hospice care.

[jstdzy]

Sandy,

My Mom recently passed away and a friend of mine had some voice mail messages from my Mom on her cell phone. My friend went and bought a little tape recorder and recorded Mom's messages for me as a gift. What a gift it turned out to be, it really helps me out a lot when I am really missing her. Would your Mom be interested in maybe tape recording some messages? Just a thought.

Dana

[recce101]

Hi, Sandy, there are some great suggestions here, and Erin's message about hospice is especially good. To encourage your mom to allow hospice to come in sooner rather than later, consider this approach:

Explain to her, maybe with examples supplied by one of the hospice services in your area, that hospice provides benefits for the entire family and not just for the individual patient. If you put it in those terms, and emphasize that you and the family could really use their advice and assistance right now even though you "know" that your mom doesn't need them yet, she might be more willing to let them come in at least for a talk. Best wishes and Aloha,

Ned

[tnmynatt]

Hospice was a Godsend for my mom while she was staying at a hospice facility. She was so comfortable and they were very attentive to all her symptoms and issues immediately. I highly recommend hospice in the home setting or inpatient facility. They take time to talk to the patients and the family members. They are a big help to everyone. My mom understood the benefits of enrolling in Hospice earlier rather than later. She was on Hospice for approx. 3 months and my dad for approx. 4 months. Perhaps you could tell her that you need the support of Hospice more than she does at this point...since they are so good at medications, helping with bathing, just talking to family, etc. I will never forget my mom's delight in her last days at how "wonderful" she was treated. Take care.

[Nick C]

The hospice thing can be framed as "let's get this detail done now, and then we'll call them when we need to, but at least the paper work will be done."

Hang in there. we're here to support you and we understand.

[Flyman35]

Hi Sandy. I'm so sorry to hear about your mom. I don't have much to add as the others have given you some really great advice regarding hospice. I totally agree with them. My sister in law had hospice for about a month after a 7 year battle. I have nothing but good things to say about them. They really do take a whole family approach.

I pray for peace, comfort and strength for you all in the days ahead.

Denise

[Barb73]

Hello Sandy,

I am sorry for your Mom's diagnosis, but glad that you have come here to be with us.

After reading all that you discussed and the information that the others have given to you, I am actually feeling more comfortable myself as a caregiver, so thank you.

As for being stressed and not always holding my cool, Bill can attest to my not being a "saint." This is normal and natural even in very close relationships. There are bound to be "those moments."

If it were not for this community of lung cancer survivors and caregivers, Sandy, I doubt if I would be able to have the strength I do have. For this, I am very grateful.

Please keep visiting and giving us updates, or for whatever you would like to say. We are here for you.

Keeping you in my thoughts and prayers,

Barbara

[Kristi]

Hi Sandy. I am fairly new myself so don't have any real advice but I am sorry to hear that you're in this situation and that your dear Mother is facing this awful disease. You are both in my thoughts and prayers. {{{hugs}}}

[sandynd]

Hi Again,

Sorry it's been awhile since I posted. This journey is just overwhelming for me!

Mom received five radiation treatments in her leg to help alleviate the pain from the bone cancer. Unfortunately, she got a serious infection in her leg plus a couple more blood clots appeared there, so she was very ill for about two weeks, and in a great deal of pain. The leg is MUCH better now and she is able to put some weight on it once again, but she walks with a walker most of the time and we use a wheelchair for any long outings such as going to her sister's apartment next door.

Mom was admitted to hospice last Friday. She is still doing fairly well ~ I think I'M the one who needs hospice as much as she does! I am still confused as to how she can seem pretty good one day and very ill the next, but I guess it's just part of the journey. The hospice program is great here, and she is able to stay in our apartment and get whatever she needs for the most part.

The hospice people were wonderful and she likes them. Her biggest problems wth the disease right now are depression and high anxiety, as they've been able to control the pain quite well. She has always been a bit anxious, but it is becoming more and more of an issue. Anxious about the dark, about being alone, about new medicine, about noises, about just about everything. When she gets anxious, she feels like she can't breathe and seems to get confused and disoriented. At those times, she almost clings to me (at least in an emotional way). Tonight we are trying a new low dose anti-anxiety medicine that, hopefully, will help.

We continue to have ups and downs in our relationship, but I THINK I'm getting better at handling when she gets upset. I am more able to let things go and just not respond since any response from me only heightens the emotions.

I am realizing three months into this journey that as a 24/7 caregiver, I need alot of help AND some time off once in awhile. Trying to continue in my occupation via email from almost four hundred miles away, attempting to maintain my relationship with my husband from that distance (he's a saint, by the way ~ well ALMOST ) while caring for my mom has me exhausted, frustrated, feeling guilty and inadequate. I'm not sure what the answer is, but I need to get help for myself if I'm going to be any good for my mom. I am planning on starting with the social worker coming on Wednesday to see what is available for me.

Thanks for your thoughts and prayers ~ and for taking the time to comment. I remember all of you in prayer as well! Peace.

[recce101]

Sandy, thanks so much for the update. I'm sure I speak for many others when I say we too are relieved that your mom is in the hospice program. Let us know how things are going, but mainly, enjoy your time together. Aloha,

Ned

[Barb73]

Hello Again, Sandy,

Thank you for updating on your Mom and you.

It sounds as though the hospice is working out really well, especially that your Mom likes them. That makes for a cohesive situation.

As for you, I do hope you are getting at least a bit of a respite every now and again from the stress.

Also appreciated are your prayers for all of us. We are, after all, walking the same walk. We may all be here at different times to give or receive, but we are understanding of the stamina it takes to get through.

Keeping you and your Mom in my thoughts and prayers,

Barbara

[fillise]

Sandy,

It sounds like you have gotten you mom the help she needs with hospice. Now it is time to find some support for yourself. Too often caregivers forget to take care of themselves. This disease is affecting you in very real ways. First, the LCSC is here to support you. Second, the hospice social worker should be able to help you find some support and/or respite care.

Let us know how you are doing.

Susan

[jaminkw]

I'm so glad your mom is settled in hospice. It sounds like you are a loving daughter who has turned her life upside-down to do all you can for your mother. O.k. to be frustrated at times, no need to feel guilty. In my opinion, your decision to withhold any response at times that it would be obvious it would only escalate the problem is right on. If you feel you need to say something, a change-the-subject diversion like "would you like a cup of tea?" or something of that nature often works as well.

You are on the right track now meeting with a social worker for yourself. You could really benefit from the comfort and support a kind empathic counselor could offer you.

Good luck, take care and keep us posted.

Judy in Key West

[SandraL]

Oh Sandy, you have so much on your plate and have been through so much with your mom. I am sure she is very appreciative. Glad to hear hospice is helping some. You are right, you need some respite and I hope you get some help soon. God bless you and take care

Sandra

[sandynd]

Hi Again,

I am sitting here at 5 a.m. trying to decide something. I am supposed to go home (400 miles away) next week to take care of some business, but I am so afraid to leave my Mom. She is coughing up more blood and becoming more lethargic and, frankly, I'm afraid she's going to die while I'm gone. The hospice respite care sounds like a wonderful place for her to go while I'm gone, but it will be so difficult to go. I've promised her that I will walk this journey with her all the way, so the thought of her dying while I'm gone just tears me up. I know there's no way we can know how long or when or anything like that. I just wish I could be at peace about going.

The hospice nurses have now switched her pain meds from oxycodone-actetamenaphin to methodone and I'm sure that this adds to her lethargy. My husband says stay here, but there are so many people counting on me all the way around that I just don't know what to do. I would have to be gone five days, and so much can change in five days at this stage. I know that none of you have answers for me; I just need to write down my thoughts as I sit here. Thanks for listening.

[ts]

Hi Sandy,

I had spent a week with my Mom towards the end of her life. Planned to go home, but my father asked me to stay. I was not able to make myself go back into the hospital room - my good byes had been said.

Went home 3 or 4 days later and the first morning at home we got the call that she had passed away. The situation here is very different (I was not the primary caregiver for one) so I am only telling this to let you know that I do not regret my decisions about that time. I am sad that she was alone when she died, but she always told me that it would be necessary for it to be that way (based on her parents.) She also told me her family was there waiting for her and would help. I still don't know what I think about that, 25 years later.

I wish you ease and comfort in whatever you decide. More than going home for business, I think going home to be in your husband's embrace is a great idea.

[SandraL]

Hi Sandy. It is so very hard, but the right choice is really whatever you choose to do. And the timing would never be right. Many have been faced with this kind of choice before and in the end, what will be, will be. You have no reason to feel guilty about going or staying. All that said, it is still a very difficult choice you have to make, and I wish you peace of mind once you have made it.

Sandra

[jaminkw]

Sandy, there isn't any way to know how far your mother needs to go in her journey. I agree that a trip home to refuel your emotional needs could be what you need. Weigh the risk, satisfy yourself that you can live with the potential outcomes and make your decision without guilt--for leaving your mother or the people you feel are counting on you back home.

Good luck with this.

Judy in Key West

[Patti B]

(((((Sandy))))

I agree that there is no right or wrong answer to whether to go home or not. I can understand not wanting to leave her, but I can also understand your need for some rest. I am sure you will make the right decision.

Most of all, I pray for you to have the strength to get through all this and for your mom to have as long as she has painfree and comfortable.

Hugs - Patti B.

[Trawna]

Hi Sandy:

I am so sorry that you are having to travel this road.

Having just done this with my husband (passed away April 30th) I know how tough it is-- every night I that I went home to get a few hours' sleep I dreaded the call from the palliative care unit that would tell me that he had gone. The only suggestions that I have is (a) you need to look after yourself too, and do what is right for you, regardless, and ( maybe you might want to talk to the hospice/palliative care staff before you decide. They have been through these situations many many times, and although they are also fallible, they also know far better than we do what is likely to happen. When I arrived back at the hospital on the morning of the day he died, the first thing they said to me was "I hope you are prepared to stay overnight tonight" ... they knew far more than I did! And then they came in every couple of hours that day just to update me on the situation, and they also called me out of the room and told me about 2 hours before the end that I should contact his brothers asap if they wanted to be there at the end. They were not only understanding, but incredibly knowledgable. They also told my daughter the day before (April 29) that she should not return home (800 miles away) if she wanted to be with her Dad at the end, which was incredibly helpful, as she was thinking of going home for a couple of days at that time, and had she done so she would have not been able to get back in time.

I wish you and your mother both peace and solace.