Different Lepto Than What I've Read Here - 1260761

chebird
Posts:104

Hello friends.

I just want to give you an update on my sweet husband.

His leptomeningeal carcinomatosis is not acting like the cases I have read about here on GRACE. Vicente spends most of the time in his hospital bed (at home) watching TV that he has a hard time following. He will get up using a walker or a wheelchair. More often than not, be doesn't make any sense when he speaks. He gets headaches that are controlled by morphine and valium (ativan made him completely nuts) about every three hours. The tumors in his lower spine cause him much pain. He is unable to have a BM without an enema.

He will have sudden seizures in which he looses all "power" in his arms and legs. His eyes will stare or roll up, but he is conscious and responds. At first, this was very scary for him, but he seems used to it now. He scares me as he will just get up and walk around. I wouldn't be able to pick him up if he crashed. He had a seizure this morning while he was sitting up in bed. He dropped the water he had been drinking and slammed his head back on the bed rail.

He is eating like crazy but not gaining any weight (on decadron). He wakes me up every two hours or so at night asking me for coffee thinking that it's morning. I am exhausted.

I have read in other posts about hospice being with the patient 24/4. That's not the case here. They drop off supplies, offer to bathe him (he refuses), but that's about it. My mom, who lives with us tries to help when she can - usually by sitting with him while I run an errand or shower.

It's a constant fight getting Vicente to relax. Yesterday, he wanted to go outside to rake leaves, but he can hardly walk! Once I found him wandering out back in sub-freezing weather at four in the morning. I am so afraid I will find him lying somewhere with his head cracked open.

I guess I don't really have a question; just wanted to describe a different path that lepto can take.

Blessings,

Holly

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Reply # - November 30, 2013, 02:48 PM

cards7up
Posts: 635

Holly, I'm so sorry to hear what Vincente and you are going through. I can't even imagine. I don't know of hospice that goes into the home 24/7, just that they're available for emergencies 24/7. It would have to be a hospice center where he would stay. Is this something you might want to do? Keeping you both in my thoughts and prayers. Take care, Judy

Reply # - November 30, 2013, 04:09 PM

chebird
Posts: 104

Thanks Judy,

We just spent two weeks in a hospice unit so Vicente could get WBR. It was a 2 1/2 drive to the cancer center, and because of the seizures, the drs didn't want us doing the drive.

The people there treated us like family; they were wonderful to us, but I was disturbed that the people with dementia were left alone to scream. I will never leave Vicente anywhere after what I witnessed.

Forgive me for whining; I haven't had any decent sleep in weeks. I get so frustrated with Vicente, then I get mad at myself. It just took him ten minutes to explain to me that he wanted tapioca.

How are you doing? I read that you had a platinum reaction. My mom gets mild reactions. She just finished her fifth round.

Judy, you have always been such a blessing to me.

You take care, too.

Reply # - November 30, 2013, 06:50 PM

Dr West
Posts: 4735

I appreciate your comments about leptomeningeal carcinomatosis; I certainly consider it to be extremely variable and am not that surprised by his course.

Also, yes, it's really challenging that hospice services are usually only able to provide very limited support for caregivers, when being the primary caregiver for someone with a terminal cancer can be an absolutely overwhelming job. I don't know if it helps, but I can reassure you that all of your frustration is very understandable. Please don't feel guilty -- you've got incredible responsibilities. I wish others could help bear more of the burden for you.

-Dr. West

Reply # - December 1, 2013, 01:25 PM

cards7up
Posts: 635

I agree with Dr. West and hope you have someone that can help you out and give you some "me time." It's so important to take care or yourself as well. I'm doing better thanks!
Take care, Judy

Reply # - December 1, 2013, 09:40 PM

bobradinsky
Posts: 144

Holly

I am so sorry to hear the difficulties you and Vincente are having dealing with his LMC. I does appear that there is considerable variability in the way the symptoms present in different patients. As my wife's symptoms worsened and she began falling more and having seizures it became impossible for me to do hospice at home without 24/7 assistance. I was very lucky to find a dedicated hospice center with only 15 beds. It was designed like a home in that there were no long corridors of patient rooms, plenty of family areas, and extremely quiet. I spent 2 days checking out facilities and this was the only one in St. Louis of it's kind run by St. Anthony's Hospital. I am hoping there may be some other Hospice options available to you in your community. It is too difficult for you to try to handle this at home with just Hospice personnel visits. You must take care of yourself too. Bob

Reply # - December 1, 2013, 10:21 PM

laya d.
Posts: 714

Hi Holly:

I'm so sorry to be reading about all that you and Vicente are going through, and wish that there was something I could do to help ease your burden. Have you spoken with the hospice people about additional care in your home (even if it's not 24/7)? Maybe if they just provide you with someone who is there at night, you (at the very least) can get a few hours of sleep. I can tell you that my Mom's hospice team did send round-the-clock care to her home (but, admittedly, she was not in hospice for weeks and weeks on end). Her hospice team was with Silverado (I think they operate out of a few states).

In any event, I am thinking of you. . .

xoxo,
Laya

Reply # - December 2, 2013, 07:16 AM

sherrys
Posts: 212

Holly, I'm so sorry to hear what you are experiencing. We went thru something similar with my dad, although in our case it was only for about a week. During that time, the entire family was here, but everyone was going to have to return to work and I was going to be alone to care for him from 5 am to 5 pm. Hospice was in the process of finding us volunteers to come in to help until we could get nurses aids in place, which they were also helping us find, when he passed away. Maybe they can help you find volunteers and/or aids?

Reply # - December 2, 2013, 08:44 AM

catdander
Posts:

Holly, I'm devastated to hear what you and Vicente are going through. I wish I could lend advice or better a hand. By what I hear hospice may be able to help with a solution to finding help. You are in my thoughts and I send peace to you and Vicente.
Hugs,
Janine

Reply # - December 2, 2013, 03:54 PM

chebird
Posts: 104

Thank you all so much for your concern and advice.

Yesterday, Vicente had a seizure that lasted several hours. The paramedics and hospice nurse thought he had had a stroke. His pupils were unequal, and he was unresponsive. His breathing was just a few roars per minute. After about four hours or so, he "woke up." He sat up, talked, and took his pills. The lepto was just doing its hellish business.

This morning, he was up in the chair for a short time, slept for a few hours and was up and responsive when the nurse came. He wanted to go to our bed to sleep and has been asleep ever since. He is so much weaker today. My son is working from here now and hasn't left his side except for a short nap.

We had the choice of having Vicente go to an inpatient hospice, but we declined. I have a lot of help with my son and mom. As of right now, everything is peaceful.

Blessings,

Holly

Reply # - December 4, 2013, 08:55 AM

chebird
Posts: 104

Thank you all so much for your kindness and caring.

Vicente hasn't eaten much of anything since the seizure on Sunday and is sleeping most of the time. I wasn't able to get his pills down him until 2:00 am last night (dex, kepra, topamax and many others).

Our son has been staying here since Sunday and is a godsend. We take shifts sleeping and watching Vicente. After my shift ended at 3:00 am last night, Vicente woke up and wanted to go outside. Son obliged in a freezing wind storm. Then they listened to mariachi music together. I've been up since 7:00 and both are sound asleep. Mom drove herself to chemo. One of my dogs snatched the dog with cancer's medication, so all is normal here. :)

If I wanted someone from hospice to stay with Vicente at night, it would cost $14/hour. With my high-end teacher salary ($2 K/month), I make too much. My days that I have saved will be gone by Christmas, but I don't believe that will be a problem :(

One quick question: Vicente hasn't been able to have a BM without an enema for some time. The last time we did this was Thanksgiving morning. The hospice nurse said she would help me with giving him one in bed, but changed her mind. I do have an aide coming over today with plans to bathe him. She might help me. Is having a BM even important now? Could this also be contributing to him not wanting to eat?

Love and blessings,

Holly

Reply # - December 4, 2013, 12:07 PM

catdander
Posts:

I'll ask one of our palliative care doctor's to comment. I see your dilemma though. It may not be necessary at this point however you don't want him to be uncomfortable enough not to eat. Have you tried to get answers from the hospice nurses or doctors. It seems to me they should be experts at this very thing plus they have first hand experience with Vicente.

Reply # - December 4, 2013, 04:13 PM

Dr West
Posts: 4735

I'd value a palliative care specialist's view here, so please don't infer that my opinion would obviate that. Ideally, you'd hope to have people moving their bowels every 2-3 days, at least, but if people aren't eating or are eating very little, it's probably not expected that a person would move his or her bowels even that often.

I think the big issue when someone is on hospice is to recognize that it's all about the person's comfort, not about worrying about numbers or general rules. If he's not uncomfortable from not moving his bowels for 5 days or more, why worry about it? Yes, it's fair to ask whether that's contributing to nausea or diminished appetite -- it's a chicken vs. egg problem of whether constipation causes diminished appetite or diminished intake is causing constipation -- but unless moving his bowels opens the floodgates of his appetite and oral intake, I suspect that they're both symptoms of the same process of general illness that won't reverse readily with a single intervention. This also means that you probably don't need to worry about a BM just for the sake of keeping on a schedule, but rather to focus on addressing things that are causing symptoms/suffering and not worrying about the other things just for the sake of following general rules that are really not important here and now.

-Dr. West

Reply # - December 4, 2013, 08:52 PM

Dr Harman
Posts: 12

Hi Holly,

This is a scenario that comes up fairly frequently. I would agree with Dr. West that at this stage, the primary gauge of doing an enema is going to be his comfort. For example, signs that would make me more interested in helping him move his bowels would be if he were nauseous and vomiting, because constipation or impaction are common culprits, or if he was having increasing belly pain and distension.

It sounds like you have quite a bustling household, and based on what I've read, it really seems you and your family are doing all the right things for Vicente at this time. I would echo what has already been mentioned about hospice--they are there for you to ask all sorts of questions and get their real-time input when they see Vicente.

-Dr. Harman

Reply # - December 6, 2013, 08:59 AM

chebird
Posts: 104

Thanks so much for the replies.

We did do the enema, and it was a mistake. We have had to get him into the shower when it is so painful for him to be moved. It didn't do a thing for his appetite.

Now, he is sleeping around the clock. The hospice nurse is going to put in a cath to save our backs. We are still able to wake him up for a very short amount of time. He obviously can't swallow pills now, so I've been dissolving the decadron in a little liquid and sponging it into his mouth.

He is mostly peaceful. He has conversations with someone unseen, and at one point sat up shouting, "Oh, my goodness!" over and over again. I think his time is close.

Love and blessings,

Holly

Reply # - December 6, 2013, 09:08 AM

JimC
Posts: 2753

Holly,

I am heartened to hear that Vicente is mostly peaceful at this time. In my wife's final week or two she slept most of the time as well, and I hope that he can remain as comfortable as possible.

My thoughts and best wishes are with you and your family.

JimC
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Reply # - December 6, 2013, 09:39 PM

chebird
Posts: 104

Thank you all so much.

It was a very rough day. My son and I spent hours cleaning Vicente up over and over again from diarrhea. He only woke up when we had to move him when cleaning, and he was in pain. The hospice nurse put a catheter in him and he is now sleeping peacefully. She said he is shutting down and would be surprised if he lasted the weekend.

I can't believe how quickly this is happening.

Blessings,

Holly

Reply # - December 7, 2013, 04:35 AM

bobradinsky
Posts: 144

Dear Holly

Now I know why I could not sleep well last night. Something told me to go to GRACE. My heart goes out to you and Vincente. I know what a valiant fight Vincente put up and I know what you and your son are going thru. Words escape me. I can only say you are doing God's work and Vincente will be loved and remembered forever. God bless you, Vincente, and your family. Bob

Reply # - December 7, 2013, 03:58 PM

chebird
Posts: 104

My love of forty years entered Heaven this afternoon. He was surrounded by loved ones, and it was very peaceful.

Thank you all for your caring advice and support. GRACE is a godsend.

Blessings to all,

Holly

Reply # - December 7, 2013, 08:03 PM

bobradinsky
Posts: 144

I am so sorry for your loss Holly. Vincente put up a brave fight against insurmountable odds. You are a remarkable caregiver. I wish you and your family peace and healing as you mourn the loss of Vincente. Bob

Reply # - December 9, 2013, 02:15 PM

double trouble
Posts: 573

Oh Holly. I'm so sorry. I can tell that you had one of those special relationships that most of us only dream of. I'm so glad it was peaceful and that family was there. As a patient, I would not be able to ask for more. That was the perfect scenario.

Your good memories will carry you through the loneliness, and we are here for you always.

Debra

Reply # - December 11, 2013, 09:37 PM

laya d.
Posts: 714

Oh Holly. . .I'm so very sorry. This disease is just so cruel and relentless. My heartfelt sympathies remain with you and the rest of Vicente's loved ones. I wish you peace. . .

Laya

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