A very tough day - advice needed

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A very tough day - advice needed

by missyladybug on Mon Jan 25, 2010 12:37 AM

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Hello everybody,

I am fairly new to the board, but have been battling this GBM with my husband for close to 18 months now and we are at "end stages".  He is unable to talk, walk, move much in bed, get out of bed on his own, is fairly incontinent and when he moved from bed to a chair via a lift, he slumps uncomfortably in the chair like an infant would, yet he still wants to be moved to the chair at least once per day, and to the commode as needed.

Today was another benchmark.  The caregiver asked for my assistance to help him get in a chair and even with the lift/hoist, he was completely "dead weight" and to make a long story short, was virtually hanging under his arms in the hoist, his breathing became rapid and his shirt was beginning to tighten around his neck,  and we had to quickly get him all the way to the floor and call 911 to come help us lift him up, and back into bed.

At that moment (after wrenching my own back in the process) I made the decision I was wrestling with all this week, and tearfully told him that he is now going to have to stay in bed full time.  This is highly dangerous for him, me, and the caregiver to try to lift him out of bed anymore.

He is a huge man ----6"6" and close to 300 lbs of partially paralyzed weight.  I honestly can't even lift his head and shoulders to put a pillow under his head,  much less turn him in bed or put him in the sling.  Earlier this week he had a urine spill in bed and all I could do was wipe him off and wait for the caregiver to arrive to tend to him - the caregivers are all big men, but it's still very difficult.

So I am fretting all day long over whether to keep trying to keep him here at home with the caregiver's help, or send him to a nearby nursing facility where 4-5 people can lift him when needed at any given time.

I just signed the papers to have caregivers at my house starting tomorrow for 24 hours a day.  This is somewhat reassuring but after experiencing what happened earlier today, I wonder if I am just postponing the inevitable and actually putting him in an environment here at home that is potentially dangerous.  He could have really gotten hurt this morning and I am feeling, tonight, like I am at the end of my own personal rope. 

His right arm/hand/and leg/foot are very cold and lacking in circulation.  We have found blood in his urine and he is on antibiotics.  He is now partially incontinent and is using an external catheter.  Most of these things have happened in the past two weeks.  It seems like the "emergencies" come on faster than I can anticipate and plan. 

Please share your experiences with me, and your advice. I would greatly appreciate tonight!

Thanks

Sharon

RE: A very tough day - advice needed

by heart_and_soul on Mon Jan 25, 2010 01:45 AM

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Dear Sharon,

Bless your dear heart, your willing heart. It's so clear that you are willing to do anything, as long as it's the right thing for him.

Have I mentioned FINAL JOURNEYS to you? it is an amazing book about hospice care and some of the big decisions that we caregivers have to make. For example, why have someone on antibiotics. For some people with advanced cancer, even pneumonia is a gentle exit and blessing. Reading that book, I began to really see the Big Picture. I think you COULD have him at home if you got the kind of support that kept him safe and comfortable. For example, I've heard that condom catheters are wonderful. For BM's there are bedpans. You'll need to have special pads and egg-crate mattresses to prevent pressure sores. (I have NO experience with any of this but reading this website and that book has given me a sneak preview of the way we'll need to problem-solve when the time comes.)

Even if he can't talk, I suspect he's aware on some level and pretty sad about recent deterioration. Hospice caregivers could help him to understand how the decisions you all make together are for the quality of his remaining days.

I honor your goodness, my friend.
Peace and love,

Sarah

mother of Andy 27 dx gbm/pnet 1/09, recurrence 10/09

RE: A very tough day - advice needed

by MamaWarrier on Mon Jan 25, 2010 03:12 AM

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I have been at the same point with my daughter.  My husband and I felt pretty inadequate as caregivers early in the process.  We had the option of moving her to a respite house but she went from the stage you've described to being bedridden with a catheter within just a few days.   Once we no longer had to move her or change depends or bedding and once the care team was in place, our job was to be with her and love her.  I'm  glad we were able to keep her stay home because I know that is what she would have wanted.  However, I think that decision depends on what the caregiver can handle both physically and emotionally ... and how much support there is from family and friends.

I wish you peace and comfort in this most difficult passage. 

RE: A very tough day - advice needed

by MsRoxy on Mon Jan 25, 2010 04:10 AM

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You are such a devoted human being.  Still trying to do the most compassionate thing.  He is on his way to a better place.  You have done all you can and Sarah is so right... don't give him anything that will compromise the ease of the passage.  The book she speaks of is so forgiving.  You are in my prayers.  This must be so debilitating.  Peace, Roxy

RE: A very tough day - advice needed

by MsRoxy on Mon Jan 25, 2010 04:11 AM

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oh and ps.  Yes, by all means take him somewhere that professionals can help and not hurt him or themselves.  You must stay heathy.  I have been so ill for not taking care of myself and I am coming back after a month of really staggering illness.  Peace, Roxy

RE: A very tough day - advice needed

by flfrog on Mon Jan 25, 2010 05:10 AM

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I totally understand where you are at in this journey and how you feel.  I was the full time caregiver for my father with lots of help from my husband before we put him in a nursing home and while it was an awful commitment to make it was the right one for all of us.  My dad was as you describe over the course of a few weeks went to being completely bed bound wasn't  eating or drinking unless you forced him and really was on the brink.  We had called hospice and made a final appt with the NO per the NO's request and upon seeing dad he admitted dad to the hospital where it was determined he was dehydrated and had an infection, after a week in the hospital and a 6 week stay in a rehab facility and another hospital stay for constant seizures it was clear we could not bring him back home (it took several dr's and therapists to convince me).  I have a three year old and at the time a newborn (she's three months now!) so we made the decision to move dad to the long term wing.  I still struggled even when seeing how many people it took to move dad for transfers but now that i have truly given his care to hospice it is a relief.  I go visit every night and just talk with him.  There's no more frustration over what we're having to do and are we doing what's best and the stress on my family is also gone as we're not worried about what my 3 yo is seeing and how it's impacting her.  it seemed like such a selfish decision but pysically he is so much more comfortable.  Dad is now blind and is starting to sleep more and not talk as much during visits so I wonder how much longer we have.  He just had his 27 month anniversary from diagnosis so we have been blessed.  I just wish his quality of life were better and he could be home with us full time but thankfully he is no longer in our reality and has no idea he isn't with us.  When he was talking a few weeks ago he would tell me when I would say good night to wake him up and he'd cook breakfast in the morning and for a brief moment I can pretend he still can and his reality is beautiful.

Dad would want what's best for me as I'm sure your husband would for you and what's best is that everyone is taken care of mentally and physically.  Hospice is a blessing and while the transistion to a nursing home is tough once you let go it's a release.  Although some nights it's hard to leave him there and come back home without feeling an overwhelming sadness that he isn't coming home with me.

I will say some days I regret we didn't enter hospice when we called originally because I truly think he was leaving us but giving him the fluids and antibiotices was supposed to make him stronger so he could continue treatments and instead it's just put him in this limbo place where he is exisiting however as I said his reality is beautiful and such a blessing to know that to him he is anywhere he wants to be.  If he had some other type of cancer that hadn't made him blind and took away his memories he would be laying there hating where he was and probably hating me for putting him there but his peace is worth the anguish i feel not being able to fully share these days with him.

I'm rambling, it's been a sad day cleaning out some of dad's things but your message really helped me feel peaceful about our decision. Blessings to us all.

RE: A very tough day - advice needed

by thinkingofdad on Mon Jan 25, 2010 05:12 AM

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Missladybug,

I cannot even begin to understand what you are gong through. I just sit in awe at the life you lead day-in and day-out. You are an amazing person, and when your husband does pass on to the next world feel so proud that you held his hand, thought of him first, and loved him so.. until the end. You are inspiring to me.

I am so sorry this disease is taking your husband. So very sorry, I cannot express how sorry I am, and how much I wish you did not have to watch him endure this, and endure this yourself.

I will be thinking of you often...

Much love,

Tina

RE: A very tough day - advice needed

by I_love_Gary on Mon Jan 25, 2010 06:23 AM

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Lady bug, your husband sounds as though he is really not in good shape.  I'm so very sorry.  What struck me about your account of the day, was that you and a single care giver were trying to do that lift yourselves.  Wow, I hope your back recovers.  If you can get enough care to come in, then his staying at home would be so nice for him, but it sure sounds like it might be the wrong thing for you.  As you read these posts, filfrog is telling you a beautiful story of her dad, and at one time, she was writing on this site about struggling with the decision of what to do, and it is wonderful to hear her tell about the quality time she gets to spend with him now.  I know you will do whatever your concience dictates.  Just remember that we are all human, just flesh and blood, not super heros.  My best wishes go out to you.

Donna L

RE: A very tough day - advice needed

by oceanswimmer on Mon Jan 25, 2010 07:56 AM

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Hi Sharon,

I can hear how tired and stressed you are with such a difficult situation and such a heart-wrenching decision to make.

If you keep your husband at home, it sounds like you need at least two experienced caregivers at your house all the time to be able to change bedding, move/turn your husband, change diapers (which you will likely need to use if he cannot use a commode any longer - I think a bed pan will be too difficult given his size and inability to move).  A hospital bed that can adjust (raise up and sit up) and that has side rails would also be helpful.  If your husband is confined to the bed, he should be turned every couple of hours to avoid bedsores.  Taking care of him in the home will be a lot to manage.  If there is not a chance he can try to get out of bed on his own, and you have help in managing the care he will need in the bed, have others to do it so you do not hurt yourself more, then keeping him at home may work. 

I think you are right in deciding that you cannot try to get him out of bed any longer.  I also think a nursing home will do the same thing. They will have a bed that sits up, but, from what I have seen in nursing homes, they will most likely not take him out of the bed.  You might want to talk to the nursing home in advance of any decision to see what they can do for your husband, as far as his desire to get out of bed goes.

If he is moved to a nursing home, you will be able to spend time with him without having as much stress on you of managing his care.  You should also be able to have hospice services in the nursing home.  You mentioned that the nursing home is nearby.  You could probably be there every day, all day, and still be able to go home and sleep without worrying if there will be an emergency you cannot handle. 

Best wishes,
Bridget

RE: A very tough day - advice needed

by moms_caregiver on Mon Jan 25, 2010 09:00 AM

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Hi Sharon,

 

     Wow, I know exactly what you are going through. Can't even imagine for a second, trying to lift a 6'6, 300 pd. person. My mom was less than half his weight, it took 3 of us to even move her (dead weight just about doubles the weight).  We actually took her to get an Avastin treatment but when they saw her she was hospitalized.

 

       As soon as my mom was admitted to the hospital, she was no longer allowed to eat. They were afraid that she could choke. Soonafter we were told that there wasn't any treatment left (quite possibly the worst day of my life). By the time she entered hospice, she no longer could respond or react to anything. My mother let us know how strongly she opposed passing at home. She didn't want us to have these memories. She survived about 2 1/2 weeks in hospice. Hospice was such a blessing for us, they had the answers to all our questions..

 

     The road ahead is going to be a tough one. Full time hospice is the best decision you could have made, (this is what you mean by caregivers for 24 hours a day, right)? I know it hurts, just know you have given everything to try to save his life. You cannot do this on your own anymore. It really helps to have the professionals in. You will be there, and he knows that.  May God give you the strength for what is to come,  Maria

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