The roller coaster continues...

Posted By
POW
1/24/2013 7:55am
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POW
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Replies: 11

 

Last week my brother was taken to the ER with severe speech aphasia, mental confusion, and an inability to walk. His brain tumors were back big time and there was nothing more the doctors could do. So they put him on dexamethazone to relieve the brain swelling and sent him to hospice. We were told to expect 1-2 weeks. However.... the dex has relieved his symptoms considerably. He is awake and alert and keeps wanting to get out of bed alone (his walking is still very unstable so that is a fall hazard). He can talk again and walk (with assistance). He is eating well, and is happy to receive visitors in his hospice room. Amazing!! He is an incredible fighter!!

He is now considered too healthy for hospice and they want to move him out, which puts the family in a bind. He wants to go home, of course, but he still needs continuous nursing care and our family can't afford a 24/7 private duty nurse. We are now trying to find a local nursing home, but so far there are no open beds. And while the dex has relieved his symptoms, he is not getting any cancer treatments so this reprieve is temporary. How long will it be before he has to go back to hospice? A few weeks? A few months? Nobody knows.

Two weeks ago my brother and our whole family were excited and optimistic because he finally started ipi treatments. Maybe--just maybe-- ipi would work for him. Last week we were in despair because he collapsed and his prognosis was dire. Now we're happy that he is so  much better, but also feeling guilty because he badly wants to go home but we can't afford the skilled nursing care he needs. On the other hand, hospice is not a good place for him medically because the complexity of his case is outside of their experience. They specialize in pain management and emotional support; they are not used to handling patients as active as my brother and don't know how to titrate his dexamethazone, for example. So this causes the family concern, too. 

When all this started 6 months ago, I expected a long, slow decline that would eventually end in a quiet and hopefully peaceful passing. I never expected all of these physical and emotional ups and downs. I never anticipated that my brother would not ask anyone for help (like asking his friends for a ride when he couldn't drive) or that he would refuse any outside help that was offered (like at-home hospice offering him a home health aide). That left the ball squarely in my court, which I didn't expect. I didn't appreciate the constant emotional tightrope we have to walk between maintaining a positive mental attitude to encourage his recovery while simultaneously being realistic about his prognosis.  Every time he suffers another medical crisis, I have to ask myself, "Do I take another medical leave from work so I can be there "at the end", or do I hang tough and see if he bounces back once again?" That is an awful dilemma to have to face time and again. 

I suspect that everybody who is dealing with any type of terminal cancer, especially melanoma, goes through these same things. I just wish I had been better prepared for the mental, emotional, and financial upheavals we're going through. Unfortunately, most of the people on the MPIP forum don't want to hear any bad news. They want upbeat, optimistic reports, for which I don't blame them. They also are not all that interested in the caregivers' perspective-- if you aren't walking the walk don't talk the talk. And I understand that, too. And I know that no matter how confused and exhausted I feel, my brother has it much worse. But, oh, what a difficult road this is to travel for those of us who love and care for the patients!!

I understand completely EVERYTHING you are saying, the caregiver life is such an emotional roller coaster, sometimes I think I will go crazy with all the ups and downs! But, in the end, it is truly amazing what we are all capable of doing! Just know that what you are going thru is completely normal under the circumstances, and I don't really think you could have prepared for your situation, it just is! Cherish your brother, enjoy every minute you have with him, and when it's his time you will have peace that you were such a caring, supportive, and loving sister! God bless, Valerie (Phil 's wife)

Well, I have been on both sides of this situation. Patient (4 hospitalizations/surgeries) and  caregiver (2 hospitalizations/surgeries.  Seems my wife and I keep taking turns in both roles. There really aren't many good answers for your situation. But it is good for you to be able to vent. I would strongly suggest you seek out a local support group for caregivers. There are many folks dealing with similar issues and we all need to dump some of the stress from time to time.

POW - (1/24/2013 - 10:57pm)

Oh, wow! BOTH you and your wife! Multiple surgeries for both of you! I can't imagine the stress you are under. You have much, much more to cope with than I do. How do you find relief? Do you belong to a support group?

Well, I have been on both sides of this situation. Patient (4 hospitalizations/surgeries) and  caregiver (2 hospitalizations/surgeries.  Seems my wife and I keep taking turns in both roles. There really aren't many good answers for your situation. But it is good for you to be able to vent. I would strongly suggest you seek out a local support group for caregivers. There are many folks dealing with similar issues and we all need to dump some of the stress from time to time.

jcmp - (1/24/2013 - 5:56pm)

Thank you for posting this. I've been exactly where you are.  You described it perfectly.  It is a long and difficult emotional road.  The ups are wonderful and the downs are heartbreaking.  I just keep hanging in there and celebrating each and every victory, big and small.  I will admit, however, that small is big when it comes to melanoma. 

sjl - (1/24/2013 - 10:30pm)

I was glad to see this post too.  I've been on this ride with my husband since April and really need to find a place for caregivers.  I don't feel comfortable discussing the caregiver side on the mpip page because I think it would be just too much for the patients to hear the caregiver side of things.  As bad as it is for us, it can't compare to what they are going through.  I found another site for caregivers but it isn't very active.  Sometimes I just need to talk about how my end is but it's surprising, at least to me, that people who haven't been in our shoes just don't get it at all.  I've been met with criticism for wondering how in the world I'm going to make it financially and told to go out and get another job, as if I could when all we do is run to appointments, often 2 hours away from home. There just doesn't seem to be a place for us.  I can find nothing locally or on line.  If anyone has ideas, I'd sure appreciate hearing what they are.  Sometimes I feel so alone, although  I know I am not.

POW - (1/24/2013 - 11:03pm)

I got a list of area support groups from our local hospice. Not the hospice my brother is in but a hospice closer to my home. They also had a list of MSWs who specialize in caregiver and grief counseling. I went to one of them and found it to be very helpful. I guess it's time to visit her again. I bet that the American Cancer Society can help you find support  groups and counselors in your area, too. 

 

I am the patient but have some feelings about this topic.
 
My Husband Randy is my caregiver.  He drives two hours for every appointment, infusion, blood draws, Optomologist appointments, waits in a chair during my surgeries.  He keeps the house up, does the cooking, laundry, pays the bills, changes my dressings, help with the compression hose. Does the grocery shopping and any other errands that need to be done.
 
He also has Addison's Disease,  is bi-polar, I am too, has two slipped disks in his neck and various health issue like we all do.
 
He worries about my surgeries, my treatments, my health in general, and losing me to this beast.
 
I worry about recovering from surgeries and treatments, and I worry about Randy.  He runs himself ragged for me.  Fortunately for us we have incredible communication skills.  When one needs to vent and moan. We can, we direct our anger at something and not at the person.
 
When we have a few days, I kick him out of the house.  Him and his golf buds go to a simulator when it's cold and hit the course if it's over 50 degrees.  The also go bowling.  They do guy stuff and relax.  And when he's out I can know that he's not thinking about all the bad stuff but enjoying some semblance of normalcy.   We also enlist the help of my 17 yr old son who lives with us.
 
We are now trying to find a block of time to make our yearly trek to Florida.  I just had two more skin biopsies, very early stuff, no worries. But still need to be re-excised.   Gonna try and post pone till after Florida.
 
I completely understand his role in this horror story and when I'm feeling well I take over as much as I can, get the deep cleaning done, etc.
 
You caregivers have one of the most difficult jobs in the world and you have my respect. 
 
Colleen

Live!

POW - (1/31/2013 - 9:13am)

Colleen, this is a beautiful and moving tribute to your husband and it speaks very well of you, also. Even though you do have good communication with him, I suggest you print out what you wrote and give it to him. Perhaps enclose of photo of the two of you together.

As the years go by, I'm sure he will read and re-read this loving message and feel good about himself and the efforts he has made on your behalf. That would be a lovely thing for you to do for him. It would be wonderful if you could write an equally honest and loving tribute to your son, too. Expressions of love and appreciation are never wasted.

You were so right.  I showed him your original post, then my reply. Then your reply.  There were a few tears.  He thinks he hasn't done enough, I didn't know that.  He was so appreciative and thanked me numerous times.  I think him reading your post helped him too.  He's not alone.  I will do the same for my son, what a great idea.

Thank you so much,

Colleen 

Live!

POW - (1/31/2013 - 12:12pm)

I'm so glad that you acted on my suggestion and that your husband was touched by your words. You are a remarkably warm and wonderful wife and mother. Take that into your heart and feel the truth of it.  What could be more important in life?