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.
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!
In agreement with you and Stacey!
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
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.
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 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
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
But good that you are thinking of yourself, your future.
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.
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.
Like so many other caregivers on here, you have above all been faithful to your loved one.
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.
Since we declined dialysis, dad has been downgraded from ICU room request to a regular room. It's now an official death watch.
So, I will go back to work tomorrow. Doctors no longer need me or oldest sis for information. I need to save my leave for the days leading up to the funeral.
Then when I first saw ts2 at the care home after mom passed, her words to me? Thank goodness I did not have to put her in a nursing home. Strange how people think and the things they think about.
I know that we all have to face the deaths of our parents and LO's, but it's the actual "going through it" part, that really kicks up the stress levels, that are so hard on us, especially us caregivers, who have been at it for So Long!
I believe that at this time, it is important to give it up to God and his will, as he will do what is right by your Dad and by you guys, the caregivers.
I have lived through those most difficult days of losing my parents, both with week long hospitalizations at the end, and the endless driving to and from the hospital, the sitting around waiting, updating relatives, the horrible food, and then going home at the end of the day so pooped out, only to do it all over again the very next day! It is exhausting, and yet it is the only place to be for those of us who Love our parents so much!
I am with so many others, who are recommending you take the money out of your Dad's bank account for your siblings plane tickets, otherwise it is You who will get stuck paying for them in the end, and that's just not fair!
Oh if only your Dad would have made your brother his POA, and you who does all his banking and bill paying, his POD, that way, you would be able to continue to use his money for things nessesary in the here and now, and for afterwards, if he should pass from this recent illness.
Book, just know that I am praying for you, and for peace for your Dad, and that you received getting some much needed rest during this stressful time! You hang in there, and Love you girl!
Using two pillows does not work, says RefluxMD. A wedge pillow, then add your pillows.
You are correct about hips hurting.
To counter this, advice from Bookluvr and Gershun has been to lay flat, stretch out your body. This can be done each morning before getting up.
Observe those kitties....stretch like they do, copy them.
And the Tums! That is your Calcium intake for the day, says my physiatrist (not psychiatrist).
Add it up, don't take too much. I am taking the Tums route recently because I cannot afford another fall caused by Prilosec, Prevacid type meds, imo.
Recalling now how a chiropractor advised stretching out like a cat, that was over 20 years ago!
And, swimming...he said I would have trouble with my neck if I did not swim.
How many of us would be so much better off to actually follow the good advice we are given?
I have regrets, but maybe it is not too late?
There is some good advice on this forum!
Bookluvr, You have given some good advice, and are a good examole, people will agree.
My primary doctor ordered a DNA that is used to guide a doctor on what medicine one can take. Lo and behold, the DNA showed that those heartburn pills should be avoided as they wouldn't work for me. Ah ha, mystery solved.
One thing I recently had to do for my GERD was to give up my favorite Cherry Pepsi and Cherry Coke. Now I drink bottled ice tea, love the peach flavor. Now I only get heartburn if I eat something that has tomatoes, or too much chocolate.
The GERD is still there hiding, and rears its ugly head if I try to bend down to pick up something heavy, like a bag of mulch. Ugh, the awful taste I would get in my mouth.
Using two pillows has helped the GERD, but now my hips hurt.
Please know that I am thinking of you and your family right now, and I am going to go on and read your updates, and read how things are going for you! You stay strong, and remember that you have been a STAR, in the care of your Dad and your Mom all these years! Take care of yourself! Love, Stacey
Please know that I am thinking of you and your family right now, and I am going to go on and read your updates, and read how things are going for you! You stay strong, and remember that you have been a STAR, in the care of your Dad and your Mom all these years! Take care of yourself! Love, Stacey