How to motivate my Mom with MM

My Mom has MM and is just starting Revlimid. She has pretty much given up eating and tells me that sometimes she just wishes she would die. My Dad tries so hard to get her to eat but his frustration starts to turn to anger as she seems to just have given up.

 She spends the day in bed with a portapotty in the bedroom and says she is always nauseated, yet never throws up. She takes anti nausea medicine and unfortuntately stopped taking her Zoloft, which I have talked my Dad into getting her back on it.

Any ideas how we can motivate her to try to eat, gain her strength and fight to live?

Dad has started reading her these messages on this message board and I think she finds comfort in knowing she is not alone, but if any of you that have MM and could send her encouraging messages, it would be greatly appreciated.

Her name is Chris and she is about 70 years old, used to be very sociable, loves to garden, has a small dog she adores, 5 grandchildren and two kids.(She loves them all also!) The whole family is traveling down to see her this Christmas and we want her to try to get up more, eat more and get some of her strength back.

Help us please.

Good Afternoon Trinket;

My Mom has pretty much given up eating and tells me that sometimes she just wishes she would die.

My F-I-L went through the same valley of depression towards the end of his fight with cancer. I got tired of hearing it and it really upset my wife (his daughter) terribly. We all stumble of this road we're on, but when you start to dwell on the negative, well, that's not healthy. And personally speaking, it won't take too many invites for the Grim Reaper to take you up on the suggestion.  Are the grandchildren willing to offer her a reason to continue? Possibly some counseling? Some outside motivating factor that she may be interested in pursueing?

My Dad tries so hard to get her to eat but his frustration starts to turn to anger as she seems to just have given up.

I've seen and experienced this with my F-I-L. Has your dad mentioned to her how lost he's going to be w/o her? How about her children, will they offer some motivation?

She spends the day in bed with a portapotty in the bedroom

Is she able to get out of bed? Even if only for short time periods.

Any ideas how we can motivate her to try to eat, gain her strength and fight to live?

You can offer many external motivators, but the fight is entirely intrinsic! She needs to see the benefit of continueing. I'll off you a simple suggestion: Purchase a Dollhouse Kit, have the grandkids pick out the colors and let your mom and dad put it together. But here's the kicker: The first one gets donated to a local charity and your mom gets her picture in the newspaper surrounded by her children and grandchildren. Then see if she wants to do the next one for the grandkids birthday gifts.

I think she finds comfort in knowing she is not alone

But we will be if she gives up the fight. We aren't going to beat this beast by throwing in the towel.

Take care;

Kevin

Hi Trinket,

 I think Kevin has hit the key motivators, or at least those that motivate me.. The lack of nutrition is a sure way to let depression take hold. What have the medical people recommended in terms of finding food ideas that she might be able to handle? Your Mom has to hang in there because once the Rev takes hold, chances are she'll feel much better.

You can probably detect a level of frustration here, because we believe that it's important to be angry with this beast and let the anger spark the desire to fight it every inch of the way. And a fight means you get hurt and it's messy, exhausting, and at times overwhelming, but the more of us there are engaged in the battle, willing to try and push deeper and farther along a rough treatment protocol, the greater the pool of evidence for the nurses, doctors and researchers to work with. I doubt that I will be here when a cure for MM is found, but I plan to be here long enough to contibute possibly one or two steps along the way. While I'm at it, I'm aware of every minute, whether I'm with my family, riding my bike, walking the dogs with my wife on a  chilly Boston night, or even watching a "chick" flick with her, (to which I always pretend indifference even when I like them).  Now this in my mind angers the beast to no end. If we quit on life the beast wins an easy one. We need to make it hard for him through a rigorous effort that gets one up and out of bed and into the fight every day. The fact that your Mom has so much support is a key factor in enabling her to participate in a contest that will someday lead to a cure for MM. 

 One other thing.. We all have bad days, which is why we lean on each other in this community. Your Dad, reading messages to your Mom is great and hopefully will lead her to participate. We would love to have her direct involvement because, like it or not at first, she is one of us and we want to help. 

 Blessings to you and your family, Trinket,

 Frank  

Hello again Trinket ~~  So sorry to hear how down Chris is at this point, but as I said in an earlier message, I've walked the same road and know exactly what she is going through!  Just a couple of questions:

How much Revlimid is she actually taking?  When you say she is in bed with a portapotty, is she able to get herself out of the bed and onto the potty herself or does she need assistance.  When I first came home from hospice, I too had a chair at the end of my couch, and my husband had to physically lift me on and off -- which went on for a couple of weeks -- and was the most degrading experience for me, yet he NEVER complained!  It became my challenge to get strong enough to get up myself, and then to be able to walk to the toilet by myself -- which I eventually did.  Meanwhile, as I've said to others, I nibbled from the variety of foods that my husband and daughter prepared JUST for me...not because I was hungry but because I knew the trouble they were going to for me and I wanted to please them! 

Alot of depression is about focusing on yourself and not thinking of others.  Christmas is the time of the year when we traditionally think of others, and Chris needs to regain that Christmas spirit and look outside herself.  Take Kevin's advice and try to help her to find focus, purpose, meaning and direction OUTSIDE HERSELF because of how ALL OF YOU will feel without her!!!  Being forthright and telling her like it is may need to happen before she really understands how you are all grieving already...and she's not yet dead!!  Not only Chris, but all of you, want to look to a brighter future -- be that a day, week, month or several more years!  What will you all be doing -- be realistic.  Don't plan for overseas holidays, climbing mountains, or things which in reality will not happen.  Make realistic goals -- help Chris to set some short, medium and long term goals and show her how they can actually happen.  Whether that is by telling her that you will accompany her somewhere that she wants to go, or will find the finance to make a wish happen -- if your goals are realistic then they will happen. For me a short term goal started on a daily basis with 'when I wake up I will get up and go to the toilet by myself', and a medium goal was something that would happen by the weekend.  My daughters would also set goals with and for me and we'd all work together to make them happen.  Long term goals were about 2 months away because I wasn't sure that I'd live that long, but hey...here I am 2 1/2 years later with countless goals achieved.  One of my daughters got me into a wheelchair and took me to the movies!! It was quite an experience - I didn't want to go, but she made it happen - from finding the chair, to contacting the theatre for how we'd be able to get in  as well as access to their toilets plus water/nibbles/damp cloths/and in case of emergency a vomit bag -- it was certainly an expedition -- but it made a goal happen and once done, well it was easier to see what I might actually achieve!!  It was baby step by baby step with the utmost of compassion, care and concern -- and those caring for me never lost their tempers but just used the adage 'try, try, try again' over and over!!  Its a two way street though, and you first need for Chris to understand how much you all want her to try, because try she must.  Let her know that you will work with her and demonstrate this to her, be it with the dolls house or any other challenge you can think of, but do it.  It is easy to sink into your couch when you do not feel well, but if you get up - just for a little while each day, you will find that each day you will stay up just a little longer until suddenly you will realise that you've been up for an hour!!  It is particularly easy when there are distractions like grandchildren/family/friends around.

Sorry to have gone on so long, but my final question is this: where in the house is her couch?  Does she sleep on this couch all the time or does she also have a bed?  I moved to the lounge in the middle of our sitting room so that I was right in the middle of everything that happened in our home -- day and night.  There is very little privacy in the middle of your home, it gives an impetus to get up and move. When people come to visit - there you are, and you try to at least sit up, for its hard to talk and share a cup of tea when lying on a couch!!  I'll stop for now, but if Chris is reading this, GO CHRIS -- read how much your family is worrying and know how much they want you to fight and try!!  YOU CAN DO IT - sure it isn't easy, but it is possible so TRY!!  We're all with you -- many people just like you, all with MM from all over the world, who have been right where you are now.  You can get through it -- take the Zoloft if you feel it helps, but YOU have the ability within yourself to grab hold of whatever lifespan you have left and enjoy it to the full!!  Find a purpose and meaning for the rest of your life and get on with living it!!   I look forward to hearing again from you Trinket -- my thoughts and prayers are with you all, Love, Cath

From Anna,

Hi Trinket, Tell her my Dad's had it going on 11 years. You might not want to say he's younger than her.

Your friend,

Anna

Frank, that you so very much for your wisdom and words of encouragement.  I have copied your reply and sent it on to my Dad to please read to my Mom.

You all are so sweet in here, so giving of yourself.  I hate this beast for possibly taking my Mom's spirit and zest from her and all of us.

Kim

On 12/18/2008 trinket wrote:

Frank, that you so very much for your wisdom and words of encouragement.  I have copied your reply and sent it on to my Dad to please read to my Mom.

You all are so sweet in here, so giving of yourself.  I hate this beast for possibly taking my Mom's spirit and zest from her and all of us.

Kim

Hi Kim,

 Until Chris comes in here directly might I relay through you to your Mom? I would just point out that she has a great partner in your Dad which is a credit to her discerning approach to a significant event in her life. I'm betting that intellectual skill will cause her to act personally, in conjunction with you and your Dad, to stand up to this challenge. Just as important, Chris raised you to be a thinking, action oriented person, determined to discover and coordinate resources to bring to bear in this battle. Certainly, if she can pass this strength and skill set, characteristics of a victor not just a survivor, on to you, Kim, they reside in abundance in her heart as well.

Sometimes it's just the first step. But once engaged, and it's on display here by those who fight on and through the old survival parameters, one's will becomes the key element in a successful treatment plan.

We look forward to hearing from you, Chris...

Frank

 Hi again Trinket, i'm putting this in two places, in case you don't see it.

 To give you some hope and a positive example -

My dad has MM, stage III, with significant bone damage. He was diagnosed almost a year ago and in so much pain at the time. (he's 77, fyi). I was positive my father was near death and on his way 'out'. I had ZERO hope and only thought the worst. He had horrid pain in his left hip, because there was almost no cartilidge left in there. He also had a severe compression fracture of the spine, and none of the medicines seemed to give him any relief. He couldn't sleep in a bed, he could barely walk, was so uncomfortable in the chair, etc. Well, i can tell you now that he is still here and doing sooooo much better - and if you had told me this 9 months ago, i would have never believed it.

Now, one year ater, my dad is back in the land of the living, very active and capable, and other than chronic bouts of diarreah - he feels great for someone with a Stage III Cancer. You would never even know there is anything wrong with him. Point being, to reiterate what another poster said above - this cancer IS very treatable, so hang in there! I learned that it can be really bad when one is first diagnosed, but then for most people there really is a turnaround and an upswing!

To clarify further, his main treatment has been Velcade, and now also the Dex steriods once a week. He also gets Aredia (a bone strengthener) once a month, and i'm gonna say that over time, this has helped TREMENDOUSLY. He had such terrible pain, big holes/lesions in his bones and could barely move a year ago... today, he is pain-FREE and his mobility is back to what it was. So please see, there IS hope and please give this example to your mom. (Hi Mom, from NYC !)  :-)

Now, he hasn't had Revlimid, but a LOT of people on this board have... and a lot of them do very well with it. Maybe not everyone, but a good portion from what i read. Some even say it's a piece of cake. Try to understand, the 'beginning' is always really bad... but once you are officially diagnosed and in a treatment, and if the cancer responds to the treatment and you & the doctor get your groove, there is much room for improvement and things will turn around. It did for my dad, and i NEVER would have believed it seeing the shape he was in, one year ago. (I didn't even think he would be here, one year later and boy was i surprised). So this can happen for your mom as well, it really does just take some time. Hang in there, you're doing a good job & keep in contact on this board.

Deb Jr.

On 12/18/2008 poppy/cath wrote:

Hello again Trinket ~~  So sorry to hear how down Chris is at this point, but as I said in an earlier message, I've walked the same road and know exactly what she is going through!  Just a couple of questions:

How much Revlimid is she actually taking?  When you say she is in bed with a portapotty, is she able to get herself out of the bed and onto the potty herself or does she need assistance.  When I first came home from hospice, I too had a chair at the end of my couch, and my husband had to physically lift me on and off -- which went on for a couple of weeks -- and was the most degrading experience for me, yet he NEVER complained!  It became my challenge to get strong enough to get up myself, and then to be able to walk to the toilet by myself -- which I eventually did.  Meanwhile, as I've said to others, I nibbled from the variety of foods that my husband and daughter prepared JUST for me...not because I was hungry but because I knew the trouble they were going to for me and I wanted to please them! 

Alot of depression is about focusing on yourself and not thinking of others.  Christmas is the time of the year when we traditionally think of others, and Chris needs to regain that Christmas spirit and look outside herself.  Take Kevin's advice and try to help her to find focus, purpose, meaning and direction OUTSIDE HERSELF because of how ALL OF YOU will feel without her!!!  Being forthright and telling her like it is may need to happen before she really understands how you are all grieving already...and she's not yet dead!!  Not only Chris, but all of you, want to look to a brighter future -- be that a day, week, month or several more years!  What will you all be doing -- be realistic.  Don't plan for overseas holidays, climbing mountains, or things which in reality will not happen.  Make realistic goals -- help Chris to set some short, medium and long term goals and show her how they can actually happen.  Whether that is by telling her that you will accompany her somewhere that she wants to go, or will find the finance to make a wish happen -- if your goals are realistic then they will happen. For me a short term goal started on a daily basis with 'when I wake up I will get up and go to the toilet by myself', and a medium goal was something that would happen by the weekend.  My daughters would also set goals with and for me and we'd all work together to make them happen.  Long term goals were about 2 months away because I wasn't sure that I'd live that long, but hey...here I am 2 1/2 years later with countless goals achieved.  One of my daughters got me into a wheelchair and took me to the movies!! It was quite an experience - I didn't want to go, but she made it happen - from finding the chair, to contacting the theatre for how we'd be able to get in  as well as access to their toilets plus water/nibbles/damp cloths/and in case of emergency a vomit bag -- it was certainly an expedition -- but it made a goal happen and once done, well it was easier to see what I might actually achieve!!  It was baby step by baby step with the utmost of compassion, care and concern -- and those caring for me never lost their tempers but just used the adage 'try, try, try again' over and over!!  Its a two way street though, and you first need for Chris to understand how much you all want her to try, because try she must.  Let her know that you will work with her and demonstrate this to her, be it with the dolls house or any other challenge you can think of, but do it.  It is easy to sink into your couch when you do not feel well, but if you get up - just for a little while each day, you will find that each day you will stay up just a little longer until suddenly you will realise that you've been up for an hour!!  It is particularly easy when there are distractions like grandchildren/family/friends around.

Sorry to have gone on so long, but my final question is this: where in the house is her couch?  Does she sleep on this couch all the time or does she also have a bed?  I moved to the lounge in the middle of our sitting room so that I was right in the middle of everything that happened in our home -- day and night.  There is very little privacy in the middle of your home, it gives an impetus to get up and move. When people come to visit - there you are, and you try to at least sit up, for its hard to talk and share a cup of tea when lying on a couch!!  I'll stop for now, but if Chris is reading this, GO CHRIS -- read how much your family is worrying and know how much they want you to fight and try!!  YOU CAN DO IT - sure it isn't easy, but it is possible so TRY!!  We're all with you -- many people just like you, all with MM from all over the world, who have been right where you are now.  You can get through it -- take the Zoloft if you feel it helps, but YOU have the ability within yourself to grab hold of whatever lifespan you have left and enjoy it to the full!!  Find a purpose and meaning for the rest of your life and get on with living it!!   I look forward to hearing again from you Trinket -- my thoughts and prayers are with you all, Love, Cath

What a sensational letter from Cath.    Little goals she would like.   For today, for this week, for 2 months away.   Be in the middle of the action.   Build that dollhouseand and give it away.   Build it with the grandchildren.   Think of goals that she could do that are giving.   Maybe it's even to do something this week that a daughter would like.    This hard time will pass.   Many here in the message room have experienced and passed through.    God loves us and has a wonderful plan for our lives.

Hi Trinket,

Vegetable juices would be excellent for your mum to take because obviously it is very nutritious and there is no digesting for the body to do, and it is also a very good pain relief.

Using a very good juicer, my recipe for my vegetable juice is: 600 mils of young carrots,  200 mils of apple, 100 mils of beetroot, and 100 mils of celery / spinach.

Put into a glass container, and drink a glassful first thing in the morning and between meals.I also drink it when the pain becomes too unbearable.

Hopefully, this will be of some help for your mum.

Kassygirl