2 Years in MC

JoseyWales

Hi my friends. I've been away for a while, reading here now and again, but trying to find a way to continue through this life. Sometimes being here is just overwhelming. Sometimes it's just what I need.

Yesterday DH "celebrated" 2 years in his MC facility, just a few weeks after he turned 60. He no long has any awareness of his surroundings. He doesn't move his head or arms at all. He does move one leg in an attempt to kind-of cross his legs. The foot goes up and down. He still eats if you feed him - he's on pureed food. He's now sleeping more, and I had a really hard time waking him to eat the other day.

Overall, he's much calmer than he was in the past. He makes no eye contact, no reaction to me talking to him, he opens his mouth to eat and drink, but doesn't seem to like or dislike any certain food. There's no reaction to his environment at all anymore.

I never thought he'd make it to the 2 year mark. He's stable. We may have years of this.

I work full time, and was trying to visit every other day along with my 40 minute one-way drive. I'm exhausted. I've been exhausted for years. It's catching up and taking its toll on me. I'm now sometimes going 3 days before I visit again, but I feel guilty I'm not there. The caregivers change so often, I just feel I need to be there to make sure things are going ok. Who is going to look out for him if I don't?

And now my dad has been diagnosed with cancer. It's probably stage 4 lung cancer. He's smoked all his life, and the fact that he's made it to 80 without lung cancer is actually surprising. He's still undergoing tests to find the extent of the cancer, and no one is talking steps to take just yet. He's lost lots of weight in the last 3 months, and is barely walking on his own. My mom is a mess. She broke down crying today. They live just a mile away, so I'm stopping by a lot, and she's calling, messaging and stopping by all the time.

Add in that my father in law has had to move from his assisted living facility to skilled care. He's been on hospice now for 3 months. Just his body shutting down one small step at a time.

This is one long, rough road.

Quilting brings calm

Oh Josey I am so sorry. I don’t know why everything always seems to hit at the same time.

Pkease try not to feel guilty about taking more time to rest between visits. Especially now that you have other visits to do too. Your spouse probably doesn’t know the length of time between visits and as long as you vary the nights you come, the staff isn’t going to become complacent( If they even would anyway). You know this is a marathon not a sprint. You need your strength.

Have you had the difficult talk with your mom about the possible paths your father could take?

M1

Glad to hear from you josey but sorry it's not better news. All of these stressors reverberate off of each other for sure.

I'm trying to be better about taking a day at a time. Hang in there and keep us updated when you can.

JoseyWales

Thanks Quilting and M1.

I have talked a little with my mom. She's in panic mode. She feels like she has to get everything switched into her name NOW. I told her she doesn't, we'll help as it goes along. Everything they own is already in a trust. But she's never really dealt with the finances, so it's a lot of just not knowing for her. Luckily my brother and sister both live nearby, so she has lots of support and help.

And you're right - DH doesn't know if I'm not there. It's a really big facility, and they rotate staff through all the units. Staff knows I visit a lot, and DH is always well taken care of. Which is a relief. I just wish there was more of me to go around.

Ed1937

Josey, I'm so sorry you have so much on your plate. I thought you had a lot before, but now? Take that guilty feeling, and throw it in the garbage can. There is no room for it. You have played the Wonder Woman role long enough. You really need to give the staff the benefit of doubt, and cut down on the visitation schedule. You will probably be surprised at how well it goes. You are a human being, and just because he is in a facility does not mean you are immune to the bad things that happen to caregivers due to stress and overworking yourself.

I hope when you get more news about Dad, it's not as bad as you thought. He sounds like a fighter. It sounds like your mother needs a little more help now, and I'm glad there are others nearby who can fill that need. Please keep us informed.

JeriLynn66

I’m so sorry you are dealing with so much at once. You’ll be in my prayers.

Cecil Jones

I'm assuming you have Hospice involved? If not, I would suggest you give them a call. I know here they have volunteers that will come and visit for free. They also have a list of people (for a fee) that will come and give me a break. I haven't used them yet but it's good to have backup.

JoseyWales

Ed - Thanks. We haven't yet heard exactly where the cancer is or a plan of action. But he's lost A LOT of weight and is having a difficult time moving around. He's not eating almost anything. Honestly, I think he's given up already.

Cecil - Yep, hospice is helping out. I've had hospice support for around 18 months. They've been great during some really rough times with DH.

mrahope

So sorry to hear you're going through such a terribly hard time right now. I would echo what everyone else has said. Your energy and interest are limited resources. Give them where they are most appreciated, and don't forget to give some to yourself. Praying for better days ahead.

WIGO23

Josey, I am new here but I read your situation with much compassion and caring. You sound like a very nurturing and responsible person who is doing your best to meet the needs of others.

In my humble opinion, it seems to me that there is no more you can do than you already are doing for your LO’s. So, take some of your boundless caring and turn it inward toward yourself. Please don’t lose yourself until you may become ill as well.

CindyBum

Wow. That is so much on your plate. I marvel at your grit and dedication.

Vitruvius

Your situation mirrors ours very closely. I have about the same visiting schedule. My DW is about the same state as Your DH, but maybe not quite as far along, 18 months in MCF, and is 72 years old. She is also hand feed pureed food but when she doesn't seem to like it she clamps her mouth shut. And although she has very little situational awareness she sometimes has a flicker of awareness that people are around. She rarely opens her eyes, maybe 30 minutes a day if that and only in intervals of 30 seconds or less.

I too feel there is a possibility that this could go on for a long time. With some shame I frankly hope for both our sakes that it won't be too long. I have not yet been able to move past all this.

White Crane

Josey, I'm sorry for all you are dealing with right now. I know what a rough road this is. Sending big hugs.

Brenda