@compmom, Unfortunately we have no real estimate of time. This brain tumor is very fast growing, and without another MRI, we really do not know how much it has progressed. He is still eating and drinking well; actually much larger meals than he ate prior to diagnosis. He was very fit and ate healthy enough, but now doesn’t care, so sweets are a good part of his day. He will ask for pastries daily and rarely wants a vegetable.
I had a nice conversation with the Hospice social worker yesterday; she was the same one we had for my dad 4 years ago. I am hoping my daughter will check in with her, as he 4 year old daughter keeps talking about the death and cancer. I think with them staying in our house this week before moving into their home next week made it more real to her. Yesterday she said he wanted to see him die. While she is asking the right questions, and is smart, I am not sure she really gets it all. The social worker told me they will be there for all of us, not just me.
Hugs to you and your family as you continue on this path. It’s terrible and hard and sad and so much to feel, all at once.
My dad was in hospice for 6 weeks after a 2.5 yr unrelenting illness. Hospice is a very different way of looking at “health” and it will take you all time, likely, to adjust. That being said, the last 5 weeks of his life were so uncomplicated and full of quiet relief (esp. for Mom) that I only wish we had tried it a bit sooner. Push everything else away and just be together. (Delegate someone to tell everyone else that you are in hospice care, and someone to screen visitors if hospice doesn’t.)
@snowball, my heart goes out to you and your family. You are blessed with good family support. Humor is ok and important at this time and that may be your daughters way of lightening the heavy load.
We are with you from afar on this journey. Your husband seems like quite a guy. May he enjoy his days as best as possible with you all there with him.
@snowball it must be a comfort to have the same social worker.
I get the sweets and no veggies. Pleasure anywhere you can find it! Even a bite or two can provide that, if his appetite declines.
I remember that hospice made me feel, at first, like I was flying a plane in pitch darkness with no instrument panel! I still wonder if my mother had a heart attack or if her aneurysm burst or???. Of course it makes no difference, but it was an adjustment to really let go, yield, accept. Her last day I was still trying to get her back on Coumadin to save her. That is called denial! Hospice folks were so helpful.
The process for your husband may be slow and gentle but even so there may be an eventual crisis. Our reactions to the pain of our loved ones and to their loss, are so complicated. I am so glad you have a familiar social worker and all the professionals at hospice but it is so so hard. Keep us posted if you can.
I’m so sorry that your family is hurting, @snowball. Sending you all the good thoughts.
In the HS class of 2010 we had something called the PVC, the positive vibe collector. We send PVCs to each other in our private FB group. All the PVCs to you.
@snowball , I am heartbroken for you and your family, although I absolutely understand your H’s decision. How quickly your life has changed. You are in my heart as you move through this journey.
Sbinaz, I’m sorry your husband feels guilt over hospice in the AL facility and I hope talking with
MIL’s friend helped him. He did what he could for his mom (as did you) and it sounds like she died as she wanted. Peace to you both.
It’s a fact that we all will eventually leave this earth, but knowing that doesn’t make it any easier for those left behind. None of us wants to lose a parent, spouse or child, and our natural inclination is to do whatever we can to hold onto them. But sometimes we have to let go before we’re ready. The decisions we make in those moments are never made lightly, and it’s human nature to wonder if we did the right thing. We have to give ourselves grace and respect the fact that we did our best in the moment.
@snowball , Just want to echo the thoughts/prayers/vibes of others on this thread. I’m so sorry you are all having to go through this, and pray that you will all be able to make some memories, find some moments to laugh, and enjoy each others’ company during this time. Hugs.
I appreciate everyone thoughts and prayers. We are Jewish and someone ask my husband if it would be ok to add him to their pray list at their church; he replied that he took prayers from all denominations and religions!
Someone above, sorry, I don’t remember who posted it, mentioning a spouse being angry at their spouse for being sick/dying; my mother told be recently that she also was mad at my dad for leaving her. I don’t know if I will have that same emotion, but will be prepared. I do have trouble watching the decline; mostly the forgetfulness. I know it is not his fault, and coming from a very high level thinker, to have him pick up his cell phone and telling me he can’t figure out how to change the tv channel, it hurts. Or asking if my daughter is leaving to go back tonight where they lived up to a week ago; they have moved here and have been staying with us through their house closing and waiting for their belongs to arrive. The hallucination during the middle of the night are the worst; I am tired and can’t convince him he just had a bad dream, or I pretend to do what he wants. He is agitated and almost impossible to calm him down. Again, not his fault, but hard for me, and mostly him.
I think your hospice people will be able to bring some peace to this. They are so good at knowing what to do. I will keep my fingers crossed that your appointment with them goes well.
Thank you for everyone’s supportive words re: the wide range of emotions that DH & I have been going through. It’s been very helpful!
DH is starting to come to terms with and accept:
that probate takes a long time and it won’t be done in a month.
that he doesn’t have the time or patience to try to sell individual pieces of Corningware or Royal Copenhagen Christmas plates on his own (so he’s having the estate sale company handle it all…thank goodness!)
that it doesn’t matter if he likes the trim color of the new house paint trim on MIL’s house…it only matters that it’s the HOA-approved color that is the closest to the prior color and we won’t be owning the house soon.
that it’s ok to feel angry at his mom for the mess she left him to clean up.
that MIL was not feeling well for quite a long time before she was admitted to the hospital and she purposely avoided dealing with it because she was tired of dealing with all of her health problems.
that there’s truly nothing else he could have done to extend her life or improve her quality of life at the end.
Meanwhile:
movers are arriving on 10/20 to move some of MIL’s furniture to our house.
DH & I took a break from house de-cluttering at MIL’s house this weekend. Too drained & exhausted to do anything. We both needed the break.
SIL doesn’t understand or appreciate any of the basics of probate when dealing with an estate. Everything she’s suggested/requested of DH is with an overarching theme of “but it’s just easier to do it this other way.” He’s been ignoring her suggestions/requests and repeatedly tells her that the LAW doesn’t ALLOW him to do it how she wants…probate law requires him to handle it like a certain way…it’s not Burger King where they make it your way.
As of about 5 years ago, MIL stopped filing tax returns. Why? She just didn’t want to anymore. Guess who now has to handle all of that? DH.
I’ve now filled 7 55-gallon trash bags full of MIL’s shredded mail and documents. Plus I’ve burned about 4 years’ worth of mail, bills, etc. in our firepit in the backyard. That process, while frustrating that we have to do it, has been strangely relaxing, satisfying, and therapeutic. She saved all of her bills since about 1998.
I’m thinking you and DH are managing about as ably as possible under such difficult circumstances. There’s just so much coming at you all at once.
My DiL’s late mother had a very large home that was entirely full of the kind of paperwork you describe. Estate places wouldn’t handle it; we hired a disaster cleanout place and took 3 Uhauls of “saveables” and filled 8 full size construction dumpsters with the rest. It’s horrifying, isn’t it? I will never save another newspaper or magazine or piece of clothing for the rest of my life. Glad that you had the good sense to take a break.
