Lenore you sound ready to go, but don’t beat yourself up if it doesn’t go as planned. It hit me harder a couple of months later. And it took me a few months to finally let go of Brian’s cell, even though he had not used it in years.
You are very correct about the financial burden of ALS for those of us that land squarely in the middle of Ultra rich and Ultra poor. One day you think you are doing ok for yourself. You have what you need, not a lot more but you are comfortable. The next you are draining you bank account like there is no tomorrow and you can’t get help without doing so.
I dropped in to work just to say "Hi" Friday. It was a good thing, I felt alright there and was glad to see people again. I already have some to do's lined up for myself and I am actually looking forward to at least getting that one piece back of normal. Though I am sure working will not feel "normal" exactly either.
I went to the Widow's group thing today and people were very nice and *shocked* I was there 17 days after the fact. In our various chats, I got to tell people about ALS and the fact that on one level, I have been grieving for awhile now. Grieving his legs, his arms, his hands. Grieving his body as it became pretty immobile below the neck. Grieving the future I knew with 100% certainty was gone the day he was diagnosed on 6/30/16. I got to cry about the last weeks of Brian's life, when after years of NEVER going there he cried and said "Why did this happen to me?". That memory kicked me hard in the head yesterday.
It was a super nice group, and I will be back to participate. I was reminded too of WHY there is a thing called "the ALS Community", WHY there is such a thing as a "CALS Widow/er". ALS is different, ALS is rare. Someone at my table thought ALS was a type of cancer. What we have seen is different from other diseases, and the absolute certainty of its end is different too.
Please don't misunderstand. I am so NOT dissing cancer widow/ers, for example. The years of praying and hoping and treatments are their own whole thing and I have nothing but respect for that. I think the "if only" in cancer is frequently pretty hellish. "I knew he was coughing funny! Why didn't I do something!" "If only I'd made him go to the Doctor sooner!"
ALS is just different. A CALS friend of mine left for a cruise three weeks after her husband died. She said she cried every day but "admitted" that she was relieved not to be a caregiver and to be getting sleep and to be out of the house. Then just about a week before Brian died, about a year after her loss she spent a whole weekend she said crying in bed and throwing up.
Trust me, I won't push to hard. If it's 7:00 AM Monday three or six months from now and I'm crying and throwing up, work will just have to suck it up and do without me for the day. No guilt.
I admit I was a little scared by seeing a couple of people in the group who were widows of 10 + years. Maybe they are there because they have friends who understand? I just don't want to replace the part of my identity that was Brian's wife to endless hole of life-defining grieving widowhood. I know and love that he will be with me forever, I accept this loss will be with me forever. I'm not saying they have done that, I don't know them.
I'm headed out again tonight for dinner with a friend, maybe a little grocery shopping then home tonight to watch movies and hang out.
Went back to work, got slammed of course ASAP. It’s the nature of the business, not shocked.
What has truly sucked however is a huge real estate mess. Turns out the Transfer on Death Deed for the house (Which was done to keep the home out of probate because it was Brian’s name only), which was filled electronically by an estate attorney, was filled in the wrong office and this deemed invalid.
A workaround to still keep the house out of probate by filling a petition to honor the transfer on death deed is being done and may be completed by 4/25. I had a refi in progress, near close which is now messed up. Hopefully the petition works otherwise probate here we come.
At least the attorney who did the TODD in the first place is doing this work Pro Bono as it was a miscommunication between offices that invalidated the deed. Good to know if it ends up still somehow in probate.
I could now kick myself for us not refinancing together when he was diagnosed, but I had a few things on my mind.
On the emotionally front, I miss Brian every day and think ever more of his pre ALS self. It’s like his whole healthy self came back into my mind and soul after he passed.
It makes me realize how torn up our relationship had beconevat the very end. Those last few months it was just so much pain and tears. Not to depress current caregivers, but for me it was near impossible finally to maintain “us” in any recognizable form after 8 months of diaper changes, a year of feedings, suppositories before that... I am sure there are better and braver folks than I.
My healthcare background worked against me at times, he too readily became “the patient” in my mind. It was early January when I felt that “us” was gone as he got more confused, had the breathing issues, etc.
I don’t like bodies at the moment, weird as that sounds. I literally don’t want to touch other people and flinch a little when they get huggy with me. Body = functions= sickness and death. How’s that for nuts? Yea, I’ll probably go tell that one to a therapist!
Believe it or not I have upsides. Glad winter is done for one thing! Glad the weekend is coming too.
Lenore, I hope that getting back to work is a positive thing for you. Sometimes I think that I need a reason to leave the house. It's hard. I wait days to go to the store, and it's only 1.5 miles away. Isn't it interesting the varying reactions we have to what we've experienced? I have no problem touching, holding, etc (but I must admit, I don't even want to help my grandchildren in the bathroom).
I am soooo sorry to hear about the house!! I would absolutely hold the attorney responsible if it needs to go through probate. ARGH. We went to great lengths to avoid probate, but a couple of wave runners ended up in only Matt's name. The lawyer is trying to get them transferred to me under the NC spousal allowance. It's a good thing I'm not in a huge hurry (I want to sell them).
It was a struggle to focus on the man instead of the patient. I was grateful about having nursing here at the end so that I could be just his wife. Of course, now that he's going I wish I had more time with him. Wish I'd just sat with him more, etc etc etc. I have to remind myself how overwhelmed I was and that I needed the break. Fortunately, I was ready for that having read what so many other CALS have generously shared about their experiences.
Lenore - I get it. Brian had become my patient for a very long time as well. I can’t even say exactly when it became patient caregiver instead of husband and wife. I too think about times I could have spent more time with him and as Becky says, was just too overwhelmed. As I write this it brings me to tears.
I’m so sorry about the whole housing mix up. Definitely keep the attorney accountable. You should not have to deal with this too.
Random thought today. When Brian was diagnosed, I comforted myself with the thought that our story was not yet over.
Since Brian died, I have had a few people say things along the lines of “I’m glad you two found each other and I’m so sorry it ended this way”.
Well, Brian’s earthly life did end, absolutely. My heart says though that our story did not end with his passing. He will be a part of my soul forever. I may, may eventually even have another relationship (but not a marriage, I will for one thing leave this world with his name) but he will still be a part of me.
In my belief system, our story does not even end when I pass on. We wrote our own vows, and I remember how careful I was to add “in this life and beyond” in place of “til death do us part”.
At the same time, I am a huge believer in moving forward. If I am in this world in ten years and you see me in a widow’s group, it will be to support others. I think there is a huge diffference between living WITH, reconciling yourself to a loss and living IN a loss.
I really think the first day of the rest of my life in some respects will be getting past this estate stuff. Then I can maybe actually deal with the grief instead of my brain trying to blow past it because I have so much to do even when I’m not working.
The house, if all goes well should be (I use that term with great caution these days!) finally be held officially by me on 4/25. Life insurance is theoretically due to show up next week - check theoretically in mail yesterday. I really, really want to clear the house, finish my refi, Pay the couple of outstanding estate debts, finish the saga of the Health Savings Account (I get that, May take 3 months) and call it done.
Word to those planning an estate: for property plan through a Real Estate Lawyer, for the rest of the Estate an Estate Attorney is fine. A real estate attorney would have caught the County error with the Transfer on Death Deed that started the house drama in a heartbeat.
It occurs to me that at some point I need to plan my own estate, independent of Brian. What a concept.
Well, I’m off to help my mom with her non smart flip phone, and maybe see a movie and mall walk like a senior citizen (it’s dreary out today). Been Semper Fi with the healthy eating. Was a firestorm of a work week. That’s normal in my business. Tomorrow I’m doing a script reading for a friend’s new play.
Lenore I hear you on getting estate stuff out of the way. I have one thing left of Brian’s and I think one thing for my Dad’s. I’m so tired of paperwork. And yes, you will then begin to grieve, at least I know I did. I too have said that I will never marry again. Maybe someday date, but otherwise, I’m good.
Is it okay that though I miss Brian every moment, I am relieved not be a caregiver anymore?
I am sad every morning I wake up without him, but what I am sad for is mostly pre ALS Brian. The diapers and the feeding and the medicating and washing, caring for him like a baby was my labor of love. It gave us more time together and for that I am grateful. As for the tasks, for the rest of my life I will think it’s a luxury to wake up and feed no one but myself and my animals. Never to change a diaper before work.
My body still has some issues from all the moving Brian around that I did. Some caregivers find purpose in caregiving. I found a lot of hard work in addition to work and a lot of heartache and exhaustion for us both. God help me, I loved him more than life itself but I’d be lying if I said I enjoyed caregiving.
Lenore, of course it's ok to be glad that the caregiving part is over.
Yes, you love him and miss him, and you would do it again if it meant he came back to you.
But, what you went through was bad for your health, physical and emotional (and when those two go, the mental processes go haywire also).
Yes, You did your best. You sacrificed and kept him alive as long as possible. You worked to make that time as good for him as possible. You did not bring on the disease, but you rose to the challenge and loved your man.
Now it's your time. Miss him, love him, heck, even talk to him. But take care of you. Sleep in, go to bed early, watch TV all day if you feel like it. Eat right, get rest and exercise, and reclaim your own health. It is absolutely what he would want you to do. Relearn what is to live your own life, and enjoy it.
There is absolutely no value in not appreciating being able to once again live for yourself. We accepted the life that ALS created for us, and we fought to care for out PALS. Now we need to appreciate the life that is left to us. To do anything else is a waste.
Big hugs. No guilt, my friend. Breath deeply and reclaim the joy. Don't let the monster take the rest o your life. In fact, I think we should have an even greater appreciation for our leisure than we ever had before, and that's ok. I'm enjoying taking things at my own pace so much that I am happy with just my dog for company.
Lenore - Becky put it so well I have nothing left to add.
I miss Brian terribly, but I don’t miss the caregiving.
When I was young, I was trained and worked as a Nurses Aide. I told myself that if I liked it, I’d get my RN. Well I hated it, moved on as soon as I could. I guess the reason I had that training was for my future when it was needed for Brian and I still don’t like it.
Lenore honey, this relief is a really normal feeling in the early months/years after losing the person you loved most in the world to such a shocking monster. Your relief is valid, the amount of pressure you were under every day is lifted, and the suffering you were witnessing is no longer in your face. Of course there is relief.
Missing the person you loved is a whole other thing, quite separate and just as valid.
It feels like a paradox of things going on inside, but even the opposite feelings make sense really. xxx
Still hassling with House, theoretically that should be resolved end of next week but somehow, I am dubious. If I end up having to lose my refi and go to probate, I will be more than a little upset. I need a new car for one thing and financially, everything has to hold if you have a home purchase or refi pending. Pending for six months for a fore-drawn conclusion would really stink.
On the brighter side, had a great dinner with friends last Friday, our ninth anniversary. It could have been a hard day but it was not.