This seems to be a question that is not asked enough or we think what we are feeling is not as important as what our loved one is going through. This job we have taken on is a tough one and there are days when I think my "stress rope" cannot be pulled any tighter. Then there are other times that make those bad days just a memory. Do you feel like banging your head against a wall one day? And then the next day your loved one is attentive and loving and comprehends whatever you say? There are some who keep those feelings bottled up within themselves; others take the time for outside resources and others who look at sites such as this for some understanding. I do better when I have someone else to bounce my feelings off of. Let's face it....we aren't superhuman and besides ourselves and perhaps a family to take care of we now have taken on the responsibility of another human who is incapable of taking care of themselves. Do you breeze through the care giving without a problem? If so, I would like to know how you do it, maybe you can offer some new ideas; do you have feelings of frustration and need to talk about those? Come and talk and know that you can speak freely and without judgement and without finger pointing.
I am caring for my mother-in-law and have been for about 1 1/2 years. She has moderate dementia and incontinence. Other than that she is very healthy. Sometimes that short amount of time feels like 10 years and I wonder how long I will be able to do this job. I get so very tired of hearing the same thing day in and day out, but I have to remind myself that to her, each time she sees me, she is offering new information. At times I have no problems communicating with her, but it seems like more and more she cannot retain a thought longer than 5 minutes. We have had to make signs for her so she will know what she can and cannot do. So far it's working, but for how long? Maybe I will have to end up making her a "Book of Do Nots". She is on memory drugs, which don't seem to make a difference. So why do I continue to dole them out to her? I guess I'm afraid of what might happen or how she might act without them. I might have to rent a boat or buy a helmet! Sometimes I see something in her that leads me to believe that she could get aggressive and what would be my reaction to that? At the end of each and every day, after she is tucked into bed, I breathe such a sigh of relief. The "inner beast" is quiet at last, or at least for a few hours.
Pull up a chair and visit........I would like to know how you are coping everyday..be it good or with handfuls of stress.
So, book, know we are all thinking of you and your family, your dad is now, finally, with your mom. Do what you need to do for you and nothing else. My deepest sympathies to the most courageous person that was able to keep going even when it became very, very difficult and for a very, very, long time, sounds like your oldest bro even knew it. You have absolutely nothing to feel guilty about!
My condolences in Memory of your Dad,
who we knew through his loving daughter,
Who escorted him through his journey
With lovingkindness, dignity, and respect,
To an end without regret, without guilt,
and giving him his rights and dignity,
The best a daughter could ever give.
Condolences to you and your family,
Adding my hugs to yours.
Be at peace now.
Saying the Rosary was a comfort to all the family members present so agreeing even if you don't believe was something very valuable you gave them and Dad. It was very respectful of you. May Dad rest in peace and you shed all the tears you need to and comfort your soul,
Go through the rituals that help the family. You don't have to participate but Dad would want you there and you can say your own prayers while they follow their doctrine.
Tons of love Book
Veronica
Wishing you Peace.
Your DAD refused medical care when he was able to protest. YOU got him care when he was no longer able to protest. You allowed him his choices, and his dignity. You have no reason for guilt. Be at peace.
You are your dad's hero - through both your mom's journey and now his -
you did everything right
Hugs
My dad's side of the family came. They stood with us around dad or sitting with us in the waiting room. Around 2pm, the respiratory tech came in to take dad off the respirator. He very respectfully told my dad what he was doing as he took it out, my tears started falling. The reality hit.
When dad started to do the hitching breathing, I couldn't take it. It was the same way he was breathing when I called 911. So, I left the room & went to join my relatives in the waiting room.... Time goes by, within 30 minutes, when I suddenly stood up and went to the restroom. When I came out, fave sis was running to me saying that it's time. We quickly walked back to the room. Some relatives came in and others on the hallway. When he was pronounced dead, my first cousin cried aloud crying so hard and apologizing to my dad. None of us knows what guilt she's carrying with regards to my dad.
Aunty asked if I would mind if she said the rosary (?) to him. I said that my dad would love it. As she said the prayer, tears were falling down my face as I stared at dad. They left... And my mom's side came next.
They did the rosary viewing at the hospital's viewing room. Aunty was wondering if she should start it or wait for others. You see, she was expecting to see relatives from my dad's side. Only a few came... Because most of my dad's side came earlier in the afternoon and did the death watch with us. I cried some more during the viewing rosary. I was staring at dad and just couldn't believe how sudden it was - compared to mom's. My older brother kept hugging me, telling me that I did good to dad, no regrets, no guilt, that I did good. Baby bro kept hugging me, telling me no guilt. (I was crying, saying that I feel so guilty, that I should have called 911 earlier.). I know mentally that I'm not at fault. But I still feel guilty.
Afterwards, we all agreed that we liked it that way. Dad's side came first and then mom's side afterward. My dad passed away at 4:18pm. 2 1/2 hours after getting off the respirator.
I'm the unemotional one of my family. Today, I cried the most. And my family were worried. When the nurse wanted me to fill out dad's death information form, I was having problem remembering things. I forgot the instructions she gave me, that SIL told my sisters to follow me. When I got out of the elevator, I just stood there. I didn't want to go to the admission office to give them the form saying that dad 'expired 1618.' My sisters had to call me to follow them.
You see, I'm dad's main caregiver. I signed the DNR. I admitted him into the hospital. Therefore, I also had to fill out his death form and ....
Trying to fix him up enough to put him in a Nursing home, or even worse, to bring him home, even more incapacitated than he was before, only for You and your sister to be responsible for even more work, is Not a viable solution. It is unfair to him, and to you! You have been through enough, it's time, let him go in Peace!
I'm so sorry, I know how hard these decisions are, especially when you Love them So Much! You have been such an Amazing daughter and caregiver, so be true to yourself, and if he is to recover from this, it will be God's plan In the end.
Do they not have a family leave policy on your island?
Sounds as though eldest sister's daughter has no intention of taking responsibility for her after the funeral.
As far as not taking money from Dad's account I respect that decision, I just wanted you to know that the accounts would be frozen just make sure you do to pay for anything from your own pocket.
Keep up the good work. many hugs
Update. Doctor is pushing for family to decide about ventilator. I THOUGHT we were going to decide this afternoon. I even took off from work this afternoon. Nothing! I'm using up my vacation days. I'm now down to 9 days vacation left for this whole year.
Oldest sister's daughter - who told her mom that she needs to have her own life and her mom needs to go - came to visit grandpa (my dad) yesterday. She was leaning more towards giving him the dialysis. She was irritating me. I asked her why she keeps insisting on dialysis. She said for the family... I told her that this is not about the family. This is only about grandpa. What does HE want. Do you really think that grandpa would go for the dialysis? She said no. But...
I asked her if she wants guardianship over grandpa? She said yes. I told her to talk to Uncle and both of them duke it out. (Can you really see my brother allowing someone else to become guardian over dad?) I asked her if she really want guardianship? Then go for it. But let me tell you this. Once you gain guardianship, I'm COMPLETELY stepping away from grandpa. He will now be YOUR responsibility. (I then stepped back with my hands waving in front of me as if waving no.)
Her eyes widened. Then she asked what does it mean to be guardian? I said that he will be like your child, your responsibility. You must take care of his health, medical needs, his bills and expenses. And held accountable to the court....
You should have seen her expression when the enormity of having 100% full responsibility over grandpa - with aunty saying that she's going to drop him like a hot potato. What? Did she really think that I'm foolish to continue to caregive grandpa while she's his guardian?
I did not withdraw any of dad’s money. My conscience won’t let me. I withdrew enough to cover his current expenses and the house insurance. After that, let probate take its course. … Sometimes, I feel that I should withdraw the money for the funeral. Then, I change my mind. In the end, I decided to just let it go. Whatever happens, happens. I will go with my conscience.
Glad, Veronica, the medical transport cost was the foot doctor’s appointment in April. I called them up about a month ago to send the invoice so that I can pay them off. They better hurry up before the bank account freezes. Thanks for your thoughts and encouragements.
Veronica, oops… in the past, they said that Medicare and his secondary insurance won’t pay for it because it’s non-emergency. So, I paid it. If my dad was normal, he would have fought them and won. He did that with a lot of mom’s bills. Dad will be buried with mom in the Veteran’s cemetery.
Ms Madge, we in the Asian part of the world is one day ahead of the USA. It’s strange to leave here on a Monday and arrive in Honolulu on Sunday.
Send – thanks for the encouragements and everything.
ABB! I just noticed that you’ve changed your name again! I think the doc was amazed only because on those rare occasions, I actually thought outside the box. When the bubble air mattress was hurting dad, I called around to see if any places sold other kinds of air mattresses. Nope. I even checked Amazon. In the end, I had make do with what we got on island. What is flat enough to go under his butt but not too high to hurt his back/spine? And I thought of those chair cushions. I went to Kmart and bought several types of cushions. Dad tried it all - & preferred the square flat ones. Tada!
Linda, my downfall with GERD is the late night snacking and spicy hot food. I’m trying to correct these. It’s just that hot spicy food is part of our culture. A little ‘dab’ of Tabasco makes the food taste good.
It’s a bit past midnight. My brain is fogging and the room is beginning to spin. Almost time to go, except a little update needed.
As Veronica mentioned, and as we did for our own Mom at the end of her life, all of the kids on shift, as well as the hospital staff nurses and aides, should be keeping his mouth moist using those little sponges on a stick. They are kept in a cup of cold water at the bedside table, and it will help to keep him comfortable, and will not tax his digestion, but only deliver enough moisture to allow him normal instinctive swallowing mechanism, as in just a tiny bit.
How soon till all the siblings will arrive in town to be with your Dad? I hope it will be soon! I'm sure that without one specific person who is managing all of the important notifications, it must be incredibly hard to handle! I would like to recommend requesting a roundtable discussion with daytime duty sister, and the lead Dr, snd social worker on his case, this way, you could see how communications might be better managed, what the current pan of care is, what if any recommendations the Dr's are coming up with, and where to go from here. Is Hospice a viable option at this point, just to make him the most comfortable? I know that if he is on Hospice, he might well get a larger single room, made homey with a couch, easy chair, and area for larger family gatherings, as well as all of the usual Hospice trimmings, ie: specialized Nursing care, pain mamagement, bath aids, frequent turning, special air mattress or the like, and visits from the chaplain, if this is what the family wishes, all the comforts possible.
I certainly hope that the Dr's are easing up on the rigid ideals of communicating with immediate family, now that there is one of you there nearly every daylight hours!
One would hope that this would prove enough, that you all Love and respect your Father so much, that you will hardly leave his side! Oh these strict forms (while obviously nessesary), sure do get in the way in cases like yours, but our parents of this generation were stuborn about such things, and yours is not an isolated case.
My own Mom (POA for our Dad) would not sign the DNR during a very serious hospital stay, and differed to us kids to make the decision. We knew his wishes and it wasn't that difficult, and she did go along with us, but just wouldn't make it on her own (maybe it's a Catholic thing). Thankfully Dad pulled through that time, but unfortunately not the next Pneumonia, that took his life. As it would be, it was me, the one kid who pushed for more Antibiotics, as I was just north ready to let him go, but when it was clear his poor old body was Shutting Down, they did do two days course of IV antibiotics (for me), but it wasn't helping, and ultimately discintinued. These are really tough decisions to make, especially under duress, I absolutely know!
Well Love, I am thinking of you, and praying for your Dad, that what will be is God's will, and that any tough decisions are taken from your hands, but if not, stay strong and do what you know would be your Dad's wishes, and what makes the most sense. Take care and get some well deserved rest! Stacey B
Not at all your fault, the feeding or non-feeding. All staff are required to read and notate in the chart. This action was error on their part. If you are at all involved, you could ask that they read the chart before doing anything. However, I believe Dad's care is out of your hands since his hospitalization and extra family involvement.
{{{{{{{HUGS TO A VERY BRAVE LADY}}}}}}
So sorry that you still have to endure others behaving badly while on what may be Dad's final days. Wishing you to be able to escort him without anger, and what you describe makes me angry too, anyone would be angry! The fact that they don't listen makes it worse for you. I like that you are still doing things FOR DAD, like reading to him.
You are a precious, loving, and respectful daughter.
Protect your heart and mind from the "others", including Sil.
Take care of yourself too!
If you need a greasy pork chop and nothing else will do, eat 1/2, then the rest later. imo.
Now, breathe 3x.
So, my shift, the nurse comes in and starts setting dad up. I look at the nutrient drink. I'm trying to see if they inserted a peg in his stomach. She noticed that oldest sis and I were watching her intently. I didn't question her because some time on Saturday or Sunday, the ER nurse mentioned something about putting in the stomach tube. The nurse attaches the feeding tube that's going down his mouth/throat.
Evening shift - SIL - comes in. She immediately asks me, "Who said to give dad the food?! When was this done?" I said it was done on my shift. Why? Is there something wrong? ... She said that the doctor said lastnight that he's to have no food. Wellll. Did anyone thought to tell me about this??????
On another subject, I cleaned the bedrooms as somewhat best as I could. It's just too hot to do a thorough job. Oy! It's 10:30pm and for the past 5 minutes the room's been spinning. I think I'm going to sleep early.
You are so right. I have to remind myself that everyone is the product of the experiences they have had and are having.You never know what someone else may be going through.
How ya doin?