
Many of us, myself included, come from a dysfunctional family which adds a lot of weight to the challenges of caregiving. I have read stores on various threads on other topics and decided it would be good to have a thread just for this topic for people to share, vent and discuss.
The idea for this thread originated on the thread named "The Caregiver....How are YOU doing today?"
My daughter also popped in this morning, as she was originally going to sit with Gramps this morning, to give us a couple of hours break, but then last night's episode happened, and we didn't feel comfortable leaving him alone with her, so we just had a nice visit.
A Very nice (and Handsome too, WOWZA!) Male RN came by this morning, I am sure it was because I got teary on the phone to them this morning, when I called in to speak with the on call RN, about verifying the new medication regimen. Med orders can become blurry I have found, when you end up speaking to 3 or more Nurses during (what I perceived) a crisis, or sudden change in my FIL'S behavior, but he was So nice, very comforting, and told us we were doing a great job and everything Right! He also changed his Foley catheter, and ordered more meds for us, so things feel much more under control, now in the light of day.
My FIL is definitely weaker today, which shows especially in his speaking voice, which becomes very faint, when he doesn't have the Ooomph behind it. He is bright and chipper still, but has no recollection of yesterday's funny turn, nor any of his in the night doings! Lol! Hubby and I are tired however, and I've had a cry, and my eyes are swollen. I just got scared of what is to come, but both the Nurses last night on the phone, and the one who came this morning said that infections can be tricky, can cause all sorts of strange symptoms, and that they don't All lead to Sepsis, as I originally thought, but Man oh Man, the Nurses was impressed with the thick and ugly Pus, that is draining out into his tub8ng and bag! He said that it is quite possible he is headed that direction, and gave us an idea of what to watch for.
They have given us the tools and free range to treat his agitation and delirium, and said we will know, if it indeed becomes Sepsis and then Septic Shock, but for now it is a very bad UTI, and we will go from here. Whew!
Veronica, you were right about the middle of the night Lorazepam that my husband gave him, it did the trick, and our Nurse team is on board, and said that we have a good handle on the meds, but it is Scary, as they are very High Power, and I'd hate to be the one who ....., you know! Yikes! It's really scary stuff, when you've never dealt with meds like this before, hence the reason why it needs to be under lock and key! That, they did stress to us at the beginning!
So I've calmed down now, have a better handle of what to do, and what to look for. FIL is all changed and fed and settled into watching football, quite calm, as anyone would be given the new dosing schedule, Lol! Now where is MY NURSE when I need one! Lol!
Another day in the life, huh? Things had been going on so smoothly and regularly, much like the movie Groundhogs Day, and then This happened, and sent me into a tizzy! I'm sure there will be more, but I'll try not to Overreact! I always say, YOU LEARN SOMETHING NEW EVERY DAY! And now I have! Lol!
Now where did I put my Valium? Lol!
Just kidding!!! 😉 ❤❤❤
My thought is that the end may be close. What clues me into this is that the day before he was alert and wanting to eat. There is often a day like this just before the end. so keep up the meds and don't worry if you can't wake him up that is the best thing. give the meds regularly even if he seems not to need them. Once symptoms get out of control it is very difficult to get it back.
Stay strong you are doing all the right things. Take turns with hubby during the night so you can both get some sleep away from the action. If it gets too bad have him admitted to the hospice. i doubt he will know anything about it if he is well sedated. One or both of you will be able to stay right there with him
Hugs and prayers Stacy.
((((((((stacey)))))) sweetheart, I am so sorry you all are going through this. I believe not treating is the right thing too. The extra Lorazepam hubby slipped him may have been enough so that he could relax and sleep. Going through terminal cancer is horrible. Fil trusts you to make the decisions and we all know you are making them with his best interests in mind - from a place of love and knowing his wishes. I am glad he is not in pain. It is good to know he can be moved to hospice hospital if necessary. I am not sure he would know the difference at this point as long as you and hub are around. Praying for you and hubby to get some more sleep and that today and tonight is easier for all of you. ❤
rainey thx. I don't believe there will be much to report - Hoping that the cyst is resolving finally. It hasn't been bothering me at night as it did regularly for quite a while. Actually the ultrasound was not uncomfortable but for one very short time. I took an ativan to relax and it seemed to relax my bladder. I had painful mammograms, so I kicked up a fuss and they are not painful any more. They don't have to be if the tech knows what they are doing. Please keep up with your regular tests. They can be a lifesaver. So glad that the quote for the rats is less than you thought. $5k is a big chunk of change.
Rained a bit last night so things are fresher here. Looking like more light rain tonight and tomorrow. We need it. Thinking of all those in the path of Irma.
I need a shower badly, and need to get my own pills down me to face what may be another challenging day!
I do know that if it becomes too too much, that they will take him to the Hospice Hospital, but we so dearly wish to keep him here, as this is what he wanted, and I'd hate to see him moved, if it's something that we can manage with meds and such.
Tonight I'll probably sleep in the room with him. There is a comfy chair in there, and I could bring in a hassock to put my feet on. The whole thing is terrifying! You just never think it could get like this! Well see what happens when he wakes up.
Take Care everybody! 💓
I think one that really stood out was Upset's suicide of that poor caregiver! How heartbreaking that she felt that was her only choice. 😥 I feel sorry for anyone who is truly alone with the overwhelming job of being a caregiver to their parent. Most of us are lucky to have spouses, companions, even just a good friend to be there for us when we feel overwhelmed. I truly cannot imagine having nobody. I wonder how her siblings will feel now. Upset, what you did for her was incredible re burial plot. I hope she finds peace now.
Stacey,
So sorry you are having to sit by and watch FIL going through all this, it must be terribly difficult! UTI's can be so nasty and make things so much worse. Poor guy.
Golden,
Hope your tests come out without anything, is there any worse test than the ultrasound where your bladder is ready to pop and they push down on you with that thing? I had to tell a nurse that I was going to (have an accident) if she didn't let me "go" and she said, "only a little or you have to come back and do it again" so.....going to the bathroom and only letting out a little was another torturous event! I managed but have no desire to go through that again. Here's the kicker, right after going through that nightmarish test, I had to walk straight over to another office for a mammogram!!!!! Agggghhhhh!!!!!! My doc was being hyper paranoid about cancers that ran in my family so she scheduled those two tests back to back. What a nightmare!!!!! I have been avoiding doing those tests for a spell now, hoping they come out with better ways to run those tests without the torture? 😉
Neighbor burning garbage? I'd be irritated too.
Oh, I made a mistake about the rat quote, he had included the whole attic in that quote for redoing insulation. There are no creatures in the attic so that is not high on the priority list. Getting rid of the rats is the main concern!
I will have to get back to this, time to go and wrap up Mom's leg.
He is still asleep at 9:29am our time. Hubby and I are both exhausted. I have no idea what the day will bring, but I do hope that the only call Nurse will pay a a visit to assure us that we are doing the right thing in medicating him correctly, as we did only follow their protocol, given by the on call Nurse in the night. No hubby tells me he slipped him another Lorazepam at about 3am.
I would be underwater by this point, if it were me! It seems that when someone in this situation, with infection spreading, Sepsis, that these high powered drugs just don't work like they should, it's Weird!
Again, I'm terrified of what the day will bring when he does wake up, and then again, he could be back to his old self, who knows, but I doubt it! I looked in on him and he looks like one of the guys from the walking dead, he's all skin and bones at this point. The day before yesterday, he was an eating machine, wanting munchies all day, which is a far cry from the guy yesterday afternoon and last night! I never knew that these changes could come on so swiftly, and now I'm not sure if we are in over our heads or this is a passing thing, I just don't know.
I'm pretty sure it's Sepsis, as hubby says it is simular to how he was acting (though nowhere as severely), the day before he fell at the AL.
We never had this with our Mom, and these sorts of symptoms are new to me. I suppose it seems (and feels) so strange Not to treat him for infection, but this is what Our Hospice suggests we do, and at this point, and if it is the Sepsis taking hold, I still believe it's the right thing to do.
Living out your days, waiting for the pain of the Cancer to bloom and ravage you body and mind with pain is no way to live IMO, I'd just as soon that this take him quickly and without him truly understanding what is going on, Oh God this is So difficult a decision, and a very dificult way to go, making decisions about someone else's life is a crappie way to feel. I don't like it, and yet again, he put the power in our hands to do what is best for him, and he has said himself, he doesn't want to linger in pain, as that is no way to live.
When I asked him (and I as him several times a day), Are you in pain, he has always replied No, or maybe a little in his right side, his shoulder or his feet, but it has never been to the point where we couldn't manage it with pain meds. Now I don't know what to do or think! This is a terrible position to be in!
I must go now and get some coffee fuel in me to face what come our way today.
I love you guys, and pray you are all doing well! ❤ Stacey
You're in a position of having to make challenging, difficult and probably "gut-wrenching" decisions. Although I can never say "I know what you're going through", b/c caregiving journeys are often similar, yet still unique to each individual and family, I can literally "feel your pain" and the anguish caused by the current situation.
You have a lot more experience than I, and from what I've read of your posts, you have both compassion and insights to make good decisions.
Still, it's painful to watch someone in distress and wonder if there are other courses of action you should take.
If I can offer any consolation as to a difficult decision whether to treat the UTI, it would be this: if you have confidence in the hospice staff, and if you know for sure that FIL's cancer is terminal, then you do him a favor by minimizing the extent of his suffering. And that might mean not treating the UTI.
I write this not to necessarily concur or disagree with what the hospice staff advises, but to offer some consolation "from the trenches". I wrote elsewhere a few days ago that had I known my sister was in a terminal state, and not continued to believe and hope that more chemo would help, I would have brought in hospice a lot sooner. To watch this vibrant woman decline, to struggle, to be so frustrated, was an experience I can never forget.
I hope you can find peace in your family and your friends here, your roses, your garden, maybe some Godiva chocolate or a little liquid refreshment, and know that whatever decision you make, it's made with the compassion I've seen you express here over the years, and with the best and more sincere intentions of caring for your FIL.
What helped me is making a tea with one lemon cough drop as the flavoring, inhaling the vapors of lemon cough drops, then drinking the warm to hot tea. I used to take a generic Sudafed pill as well; that helped even more quickly.
Hope this helps someone...anyone. In our area, pollen alerts have literally been consistent through summer, although pollen never bothered me as much as smoke and mold.
I am not asthmatic, but can choke up a bit with allergens like wheat. No fun, but at least I can avoid it. It is hard to avoid airborne allergens.
stacey - keep us updated about fil.
Still no word from the AB health worker, so I haven't been able to submit my list of preferences for NHs for mother. No word either from the insurance co about the "errors" (their own mistakes) that they found. Sigh! It would help if people did their jobs,
Hope everyone has a decent weekend.
upset - taking a break makes good sense. Peggy's Cove is beautiful and New Brunswick has some lovely scenery. Enjoy the trip. I hope you come back refreshed.
Drat! Can't sleep. The neighbour behind the house has had a backyard fire going since last night and sparks have been flying 20 feet in the air. We ARE in extreme fire hazard conditions and everything is dry as a bone. I feel like carrying a bucket of water over and dousing it. It is slowly dying down; however, I still feel uncomfortable. The house lights are on so I guess they are weekend partying.
Just took another look and it is out, thank goodness. Maybe I can get some more sleep now.
UpsetSister, oh Dear, I'm so sorry to hear of your patient from your group, it is so tragic when one reaches out, and no other family members step up to help. If only.... but unfortunately, her siblings are going to have to struggle through this somehow. No one ever knows to true story, but in her own words, they never came when she reached out, and what a shame.
I hope this somehow can be turned into a life lesson for you Caregivers classes, later on down the road, because there are so many caregivers who find themselves in this dire situation, and nobody offers to help them, and then they feel that they have run out of options, and that their life is no longer worth living. So very Sad!
I hope you can find a balance with your son/dil. I hope you can understand the need for a caregiver to have a safe place to go to for support.
Stacey, I can't imagine what you and your husband are going thru with your FIL and his illness. So difficult. You have my prayers for peace and comfort.
I'm taking a break from work on the center. PJ and I are taking the ferry from Bar Harbor to Halifax tomorrow. Going to drive back via Peggy's Cove and New Brunswick and will get back Monday. No real itinerary. Taking the ferry to Halifax was one of my son's favorite road trips to buy Leaf Canadian sports cards growing up. He's 38 now and asked me to buy him some hockey cards on this trip. I don't think he has quite grown up. Everyone have a quiet weekend and take care of yourself.
jessie - my mother is on comfort care and they said they would treat any infections so I am surprised too. Maybe when sepsis occurs they figure it isn't worth it as it won't work anyway. My ex mil got to a point where no antibiotics helped.
ali - you explained caregiving in the dysfun fam well. " It adds another level of pain to be taking care of abusive parents." Absolutely! I could not imagine my mother being me or me being my mother, either. It is too big as stretch of the imagination. Oh gosh - sinus infections are horrible. Hope you have something to make it better and that those problems go away when you move, Looking forward to hearing more from you when you are up to it.
glad - thinking of you. I had my last dog, Matt for 14 years, and lost him 8 years ago. I still miss him
upset - thinking if you too and the sadness of it,
This is the DYS thread. Perhaps your comment, Oregon, is more appropriate for other threads. This thread is mostly about people who are or were caregivers to dysfunctional family and the extra hurt that brings.
I don't think anyone who does caregiving for more than a year is without compassion for those we try very hard to help. It's too easy to walk away when things are difficult. I didn't walk away, though. I dug in my heels and declared (by my actions, if not my words) that I was going to see this bad situation to its conclusion, come anything, for the purpose of bettering my father's life, and I did that. Honestly, I don't know I would've lasted another year... I thought of killing myself and my father so often... so I'm thankful that things progressed and I was able to get my father moved on.
And I'm truly apologetic that this contrarian bit is all you've heard from me in a week, DYS thread posters. I've been reading and I do have things to share but mostly I've had a stupid sinus infection since Tuesday. I never had these darn things before the house here and I'm crossing my fingers they go away when I move. Ack
Upset, I'm very sorry for your caregiver's suicide. I don't think any one thing or any one person is ever responsible in ANY way, except the person's decision that they choose to end life instead of make changes and get help. It's a very tough spot and I sympathize with her and with you, too. I'm glad you're trying to be of support to caregivers who need you. It's god's work, so to speak.
I just wanted to check in and let ya'll know what is going on in my little world, besides watching this crazy weather, aswe are still getting heavy smoke/smog from the fires burning in our state and No Oregon, and of course the Hurricane, which while fascinating to watch, I'ts horrible, the path of devastation it is leaving in its wake. Those poor poor souls who are stuck on hi ways leading out of town, and those who have already lost their homes and towns all over the Caribbean and The Virgin Isles! Now praying for Florida, and then there the next one following in Irma's footprints! Just Awful!
My FIL is hanging in there, although things they are a changing! He has a terrible Urinary tract infection, and now delirium and agitation to follow, so I suspect that Sepsis is setting in again.
Our Hospice Nurse Tara says that the school of thought is that we do not, will not use antibiotics to treat, and keep this at comfort care only.
There has been a big and distinctive change, just from yesterday, but we will see what tomorrow brings. He was calling out things
Like "I'm gonna stay home tonight", and "I don't want to go to school today", then he was wrestling with his covers, even tried to get out of bed, because he thought he needed to go to the bathroom, and he was shaking his head back and forth with his eyes glazed over, and running his hands through his hair and face.
It is all a bit disconcerting, a bit scary in all actuality, and I've had the Weekend Nurse on the phone who added Haldol, more Lorazepam, and now Morphine to settle him down. I sure hope it works! Oops, spoke too soon as he's calling out again! Grrr, I've given him enough medicine to knock Me out, and I don't know how he is fighting through it!
I have feeling it's going to be a long night! So that is my world in a nutshell! I'll try to catch up in the next day or so, and see what you all are up to! Love to you all! Stace
This thread addresses the issues of dysfunctional families and that being the case it is not surprising to find anger expressed. However, it is also expressed on many other threads in Aging Care.
I know you miss your partner so very much. I am sorry for your loss and the changes it brought into your life
rainey - Whoa -that's a lot of money to get rid of the rats, but absolutely essential. Glad your mum is doing OK.
upset - it will take a while for you to get past the suicide. That was a violent means not typical of women.
Supposed to rain here tonight which would be good. It should clear some of the smoke.