The Caregiver & Dysfunctional Families: How are you doing?

BOOKLUVR thank you for sharing just how difficult this journey is, when it is only on one person to do all the caretaking, despite reaching out! I'm so glad you somehow made it through you caregiving journey, by the grace of God!

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!

stacey - what hospice says about not treating the infection makes sense to me. The options aren't great whichever way you go. It is such a tough situation.

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.

Stacey, I agree when one has to choose QOL vs cancer. No, you definitely don't want the cancer to reach the brain and the suffering involved. Your journey with FIL has come to a full circle. I've been keeping an eye out for your latest posts. Stay strong. {{{{HUGS}}}}

Golden, I really hate it when people burn their trash at nights. What if they lose control and it spreads. So many homes and apartments with most everyone asleep. I wake up in the morning with my face stuffed up, major sinus and headache. I'm very sensitive to smoke. My throat closes up and I start choking. Two doctors said I'm not asthmatic, just very sensitive to smoke. One even Rx an inhaler.... I hope their burning hasn't affected your sinus.

Stacey, it makes sense when there is cancer. I know it's hard to watch, though, and even harder not to watch. Big hugs.

thx book- bylaws say you have to have an approved fire pit if you want a fire in your backyard. I don't think they were burning garbage. I think it was spruce which sparks a lot. But, it looked dangerous to me. I have had a sinus headache for the past few days - could be the smoke from the forest fires which is fairly bad here these days, though it did not affect me like that down south. I still suspect some mold in the house, or a combination of things. I need to hire someone to give the whole house a thorough cleaning and see if that helps. I can't do it all at once any more, but do it ins bits and pieces.

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.

I haven't kept up on this thread but just happened to see the comments about sinus headaches. You have my sympathy - I suffered from them for years.

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.

Stacey, I've just read your update post and am so saddened to learn of the turmoil you and your family are experiencing, especially due now to the UTI which is plaguing FIL.

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.

It was horrible night, the first one and I don't know how we will survive another on like it! 3 times, he tried to get out of bed, we have cranked it down to the lowest level. I was on the phone to Hospice twice, getting their authorization to crank up the very high doses drugs to keep him calm, and hopefully asleep. He was crying out, yelling, and sayi6these off the wall things that they made no sense, and I just went along with him, rearrange his blankets, tucked him back in, and went back to the couch to wait and listen. I'm so afraid that if he ends up on the floor, that we will have to call 911 for help. I know that I got very little sleep, he did however calm down about 3am. I finally slept for about 2 hours 6-8.

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

OK, I got a chance to do some catching up last night. Wow! Lots of stuff, almost overwhelming all that is happening with everyone. Some new folks, welcome!
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.

GA, thank you! You kind words both resonated with me and bolstered me up to face the coming days. He is still sleeping, Thank God, and I hope he stays that way for another hour Please!

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! 💓

GA - nice to see you back posting and especially to see you here. I had my first sinus infection when I was 7, so it has been virtually a life long problem. I have taken some pseudoephedrine (sudafed) and it is helping. The medicated tea sounds good. If the pain is really bad I use Naproxen (NSAID) and that does it. You expressed very well to stacey what I think many of us feel. I am so sorry about your sister. I lost a dear friend to cancer many years ago, and she went through more than anyone should have to. It still bothers me.

((((((((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.

Stacy your situation is unbearable for you but not one hospice nurses don't witness often.Many times doses of medications need to exceed what would usually be considered "normal" The nurses are usually given a range of doses they can authorize and after that need to get a Dr's authorization. Hubby's extra dose did the trick last night so request a doseage increase so you can give it before his anxiety gets to an unbearable point. If it is not working call the nurse that is what they are there for.
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))) hugs and prayers for you, hubby and fil. Can you have a nurse help for some hours so you and hubby can some rest, even if you don't sleep, maybe get something to eat.

Stacey, so sorry you are having to deal with this. Prayers for you, your Husband and his Father. (((((HUGS))))))

Stacey, hang in there. I would do the same in your shoes. Once your dad has his pain/anxiety under control, I think it would be fine to move him to the hospice hospital. You will be able to be comforted there as well. (((Hugs)))

Thank you all for you kind thoughts and prayers! My FIL slept well until about 9:45am, and it was a nice bit of peace and quiet this morning even if I didn't go back to sleep! My son popped in to help my husband carry in a new 150# safe that he bought at Costco, as the key feature on our old one got stuck, and my FIL'S Rescue meds were locked inside, and thankfully my husband drilled out the key hole a couple of days ago, so those much needed meds were available to us last night, Ugg!

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!!! 😉 ❤❤❤

Staceyb
You probably know but you should be able to contact Hospice 24-7 for assistance. Hospice came in the wee hours of the morning to check what was going on with my StepDad, hold my hand on deck and calm me down. RN stayed with me for about an hour...in the wee hours of the morning...2 or 3 am.

Thanks for sharing what you're going through. It helps you to release those fears. And to us so we can appreciate what you and your husband are going through, the tiredness, the fears, etc... and how different FIL is now in the daytime. Now that he's a bit stabilized, you and hubby can take turns on some shut eyes before tonight. You both are doing great! {{{HUGS}}}

Stacey, I have no experience with what you're going thru. But what does come thruclearly is that you and your husband are clearly taking the necessary steps to provide your FIL comfort, compassion and dignity for what may be the last stages of his illness. Blessings.

Staceyb: I've been following this thread for a while. Parents are in AL near me, but I still have duties & obligations. Re: your FIL& his restlessness - I've heard some caregivers will take the bed frame away & have the patient sleep on the mattress on the floor. Seems improper, but it may prevent a fall.  All depends on the patient & circumstances, of course, but sometimes you have to get creative.  Again this may not resonate with many, but it could work for some.

It's pure Madness I tell ya!

The day went on, with FIL much more subdued during the daytime, but 6pm hits, getting him ready for sleepy time and then his agitation starts all over again! Hubby gave him his bedtime meds as we always do, and then the Moaning begins again calling out, saying weird things again. More meds as instructed, and still he calls out and when either of us gets up to check on him, but he doesn't recall why he called out for us in the first place, so tiresome! Ugg! 9:13pm, hubby headed off to bed, and we're just praying that this last dose knocks him out enough that we can both get some rest.
Sundowners? We don't know, but maybe some of you who may have gone through something simular have some suggestions? We are stumped!

I'm headed to sleep myself and hope sleep comes. The crazy part in all of this is my little Charlie-girl hears Everything, and if he (FIL) alerts to something, she goes nuts until one of us checks on him. I think we all need some sort of sedative at night, so we can all get some sleep. It was very weird day, that went by so fast, and nothing got done other than waiting on and worrying about FIL.

It'so tiring! One way or another, he going to sleep, even if we need to double up on the sleepy time meds! One for you and 2 for me, Lol! No, just kidding! I do have a Rx sleeping aid, but I'm afraid to take it for fear I won't hear him!

I hope that everyone who has been affected by the Hurricane and storms, as well as their families are safe and sound tonight and throughout the weekend! Prayers for all!!!

Stacey, I may be confused, if he is taking Ativan in the evenings, can't Ativan in some elderly individuals, cause the opposite effect?

Stacey, yes, Sharyn is right. Did not even occur to me until I read Sharyn's comment. Ativan has the opposite effect as intended, as do many meds, on some of the elderly. My mom could not take Ativan it made her completely nuts, agitated! My suggestion? Hospice hospital, they will figure it out.

You need sleep too!

All benzodiazepines can have an opposite than intended effect on someone over 65. My doctor gave me Ativan last year in the middle of my dys problem. I took one 0.50 mg tab and stayed up for 37 hrs. Didn't try that again. Much would depend on his body weight and other meds. I would run by his hospice nurse.

My mother takes Ativan each night to help her sleep. It works well to calm her nerves down some. Honestly, I don't know what she would do without it. She started taking Valium when she was in her 30s. She has been taking some type of benzo since that time. She has been taking the Ativan for 20 years or so. She's 91 so there's not much point in trying to change things now.

I think anyone who is toward the end of their lives shouldn't worry about addiction on the minor sedatives. My only concern would be if they had too much and lost balance. Falling is a big concern. My mother takes 0.5 mg twice a day and it doesn't seem to affect her balance.

SharynM, he takes Lorazepam, Gabapentin Oxycodone, Tylenol at night, and Hospice has now added in Haldol (for agitation) and morphine too. Those first 4 med he's been on since the beginning, the last 2 just these past couple of days.

FIL did final sleep after 9pm, after husband went in and gave him more Lorazepam and Haldol. It's 8:30an, snd he's Still sleeping! Thank God! It's nice to get some coffee in me before the workday begins. Love to All!

Crazy Hurricane News Day! Zowza! Stay Safe!

Jessie, If they work for your Mom that is great and I don't think addiction should be a concern for an elderly person. I'm 67 and for whatever reason I don't have typical reactions to drugs. Drug manufacturers do state for many drugs that there can be adverse reactions for those over 75. But by all means if they work for your Mom - use them.

Thanks Stacey.

My mom started taking Xanax at night to help her sleep at about age 80. Worked well. Eventually she needed some during the day as well. she worried constantly about becoming dependent.

Once she moved into IL (mostly due to anxiety) new geriatric psychiatrist switched her to klonopin, which is in the same class of drugs, but seemed to suit mom better.

She was on a low dose of klonopin until the end.