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.
If you withdraw the money, be sure to put it in an account-no cash lyjng around, no matter how well you think you can hide it.
Will Dad be supervised by hospice, while in his new hospital room, for comfort care?
Hospice would solve the is he in pain question between you and Sis. imo.
Like so many other caregivers on here, you have above all been faithful to your loved one.
Isn't your employer going to give you compassionate leave? It's not coming out of your annual allowance of time off, surely? If you're not sure, ask - give them an opportunity to be generous.
But I agree that being at work will be better for you, as long as you're up to it. Take care.
These doctors are driving me crazy! SIL said that dad has a new internist. He wanted the family to reconfirm - again - that no dialysis on Dad. So, I tried calling baby bro and got the voice mail. I then called older sis, she answered. I asked her again and asked her to please contact all the other siblings again that it's still no dialysis. Text SIL the answers.
Because oldest sis agreed to stay all day at the hospital, I left the hospital around 2:30pm. I went home to finish the laundry, cook rice for dinner, and started cleaning the bedrooms. I was so surprised to see oldest sis being dropped off around 3:30. It's very vital that either she or me be at the hospital. None of the family have dad's history. I would have gone back to the hospital, but I'm going back to work tomorrow. Then after work, visit the hospital. And that means leaving the hospital at 10:00pm. That would be a tight schedule to clean the rooms. Not enough time. So, I stayed home, cleaning, and throwing lots of very old curtains, blankets, etc....
Teacher niece visited tonight. The internist and the blood pressure doctors visited at different times - 4pm and 5pm. And she could not answer most of their questions. I was getting angry. I don't understand oldest sis! She's really pissing me off! I don't give a d*mn that she's not all there mentally. She's not exactly what I would call 'mentally challenged.' She just had a hard life, had a nervous breakdown and can't handle real life. Well, she needs to get her act together! Tonight, I had a talk with her. I said that when dad dies, I don't even think my measly income can keep us here in the house. This month's power bill is almost my whole paycheck. And then there's the water bill, the cable and telephone/internet bill, the house insurance and the yearly land tax - which will be most of my paycheck. Just by reviewing this, I already know that I will have to find a 2nd job. She says that we can go under the federal housing program. Uh,,, NO!!!!
So, now, I'm going to have to go to work tomorrow, and tell my boss that I will need to work part-time hours so that I cover dad in the afternoons. If we have to move out of this house, I'm really thinking of not having oldest sis live with me. She's a liability. I will end up being her caregiver. And I'm really resenting her. I have no patience anymore for being a caregiver... Not one time, in our conversation tonight did she mention that she can Try to find a job.... FYI, SIL has spoken to her daughter about taking care of her mom's health issues.
I'm venting because I'm displaying more and more anger as the days go by. I'd rather let it out here than towards the family. Okay, time to pay the bills.
But good that you are thinking of yourself, your future.
Today, just now, at 1:30 PM CST (Houston) is a perfect example and I needed to vent.
Usually my wife's "sundown" time each day is about 5 PM. Today it just happened and I become the object of her "hate" and venom. Her main flash point starts when she starts asking "when are we going back " I ask back to where ? She always answers "MY home .. where I grew up" ---- that leads to "can I call my Daddy" (who has been dead for 40 years) ...... I dance around that as much as I can .. and it goes on and on....usually to nearly all out war .....(no fisti-cuffs yet)..
I could go on and on ...but I'm sure most here have had the same or similar experiences .... of course , she won't remember a word of this exchange an hour from now .........
This only scratches the surface ..... thanks for reading..
fisherman
I personally have never dealt with dementia, knock on wood, but please know that I am praying that this phase of her dementia is swift, and passes quickly, and that you find some ways of coping, and possibly a caregiving helper, who might be able to come in and relieve you for a few hours each day, if you don't already have one! You take care and come back often, as the folks on here really do care about one another!
Stacey B
You mentioned that your Dad hasn't regained consciousness since entering the hospital, and that all of your siblings are on board, on foregoing the Dialysis for you Dad. I personally believe that this is a wise decision, as at this point, his kidneys are shutting down, he has been through enough, and putting his poor old body through more prodding and poking, only gain a few days, weeks, or months of continuing poor health, that and all of the stress this is putting on You and the rest of your family, I just think it would be better to let him go in Peace!
Our bodies are miraculous things, but aren't meant to live on forever, and I believe that God has a plan for each of us, so leave it up to him. Doing heroic measures isn't always the right thing to do, only to have them suffer with additional ailments.
At the end of my own Mother's battle with Uterine Cancer, and she had just been hospitalized into the Hospice Hospital for symptoms of "actively dying", the decision was put to us 6 kids to decide whether or not to discontinue liquids, including IV fluids. After a round table discussion with all of her Hospice team, there was resounding agreement from everyone, that her poor body was Shutting Down, her labs were all over the place, she hadn't been conscious for several days, and forcing her kidneys heart and lungs to "digest" and process additional fluids, was simply adding even more stresses to her body, that was clearly shutting down and checking out. Her pain medications though the chest port would continue, but she never showed any signs of pain at this point. We all knew, that it was what Our Mom would have wanted, she was in the best place, and there was enough of us there to swab her mouth and to see that she was being kept comfortable, turning her, Washing down her skin, and just loving on her. She lasted only a few days in this condition, and her death was calm and peaceful, just as she had wanted.
Hopefully Hospice is an option for him, and I truly recommend you ask for it. I hope this brings you some form of peace and clarity with your decision. Your Dad surely wouldn't wish to linger on in pain and poor health, even worse than it has already been.
Please take care of yourself, and don't let guilt or sorrow eat you up. You have given your Dad and your Mom so many years of outstanding service of love and great care! Everyone on her admires your commitment to your parents and family, and now it is near time, that he passes on, to be in heaven with your Mom! The rest of your life will soon sort itself out. You are a wise and wonderful lady, and now it's time to put it into God's hands. Love, Stacey B
I observe that the doctors may need to CYA. That means 'cover their azz'.
It is apparent to me that they have made medical decisions for your Dad all along, in the absence of DNR, medical directives, a medical POA, or a POA.
Example: The surgery for internal bleeding-the surgeon refuses. Done deal. That leaves them liable.
There needs to be one family member to communicate with doctors because this kind of critical end-of-life-care is never done by family votes or a general consensus of 7 siblings.
Are they treating the pneumonia? If so, who made that decision?
The doctors are worried.
As an advocate for your Dad, you need to simplify: Write that he would never allow these treatments, and refused in the past. Where is oldest brother, maybe they will listen to him?
Be sure that no one in the family has given conflicting instructions. Maybe meet with hospital administrators to clarify?
So sorry this is so very hard.
I'm sorry you and your wife are struggling with dementia especially at a relatively young age
Not knowing too much of the background- I'll just throw out a couple of things for you to consider or ignore
Is your wife taking any meds for Alzheimer's or to calm her ?
Does she see a physician regularly?
Is her behavior suddenly or gradually changing ?
Does she get UTIs?
Do you have help so
You can get a break?
Unfortunately certain stages with anger can last a long time and can get worse before a new phase begins
Please vent all you need here
In agreement with you and Stacey!
Now in a medical emergency situation, there's HIPPA, and then there common sense! I know for a fact, that the Dr's here would defer to a specific family member, if POA, and or HIPPA forms hadn't been signed by a patient. Now, the Dr's here wouldn't nessesariIly just go along with Every medical decision that "appointed family person" would want, say like "pulling the plug", but they would use common sense in the explaining all of the possible options available to the patient/parent, and would Never completely shut out any form of communication with obvious children of the patient. It just seems so unjust, that they really are doing this to you and your family! My thoughts and prayers are with you Sweetie, and I hope you are getting some rest in here and there!
How ya doin?
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.
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.
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.
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