Hi all. New member here and have a concern I would like your opinions and thoughts on. I have been a Private Duty Caregiver for years, self employed. I simultaniously work stints in hospitals and other facilities. I have had one client/family for nearly 8 years. They are the loveliest people and family I have ever been blessed to work for, and one of the client’s daughters and I have become extremely close friends through this time.

As the Dad in family has deteriorated the past 3 years with severe dementia, this daughter, my friend, has given up everything in her life to care for her father 24/7 round the clock. She has a wonderful heart, is very sacrificing and loving to her father. As a hired caregiver, I give her reprieve, but she is still his primary caretaker, and it has clearly taken its toll on her physical and emotional health these past 3 years. Her dad is in a constant state of agitation and sleep deprivation. Her dad is 99 yrs old.

Recently the Dad developed acute heart failure. He swelled like a balloon with oxygen levels in the 60’s. He was rushed to hospital and has been in ICU getting great care, however his heart is only functioning at 20%, and he is a full code. He also has aspiration pneumonia. He is but a shadow of the man I have know through these years.

My problem is my friend, his daughter, is in absolute denial and feels he will completely recover to lead a full life when he is released, despite the dementia. If doctors even suggest comfort, she rages at them and thinks they just want him dead and don’t care. She is unable to view the situation with any sense of reality. In truth I feel she is delaying the inevitable and prolonging his suffering because she is unable to let him go. She has revolved her entire life around him for 3 years. The heroics they are doing is shocking. As her friend, what can I do to help her grasp reality, if anything? Any suggestions?

Finally, my friend feels that although her dad is in ICU with a 1 to 1 ratio nurse to patient care, that she should be there at the hospital 24/7, or if she cannot be there, has a hired companion so he is never alone. Through the years she has put him in a facility for a one week respite care occasionally, and even then has hired companions in addition to staff 24/7. To me this seems extremely obsessive and I don’t understand it. In all my years I have never seen a family member who feels their loved one shouldn’t be without constant companionship ever, even for an hour to get lunch in the cafeteria. In addition to nursing staff. What is this about? Is this obsessive? I want to understand my friend. She has an opportunity to at least go home during the night to get some sleep, and she refuses, even though the nursing staff are taking great care of him. If she has to run to the store and leave hospital for an hour, she will hire someone to sit with him in the ICU for that hour. Can anyone shed any light on this for me so I can better understand my friend/employer? Thanks guys.

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As a medical professional, you understand that even with excessive heroics, devotion and obsession, when it’s Dad's time to go, he will. You can only hope that your friend will be there when he does pass. Earlier in the year, we had a poster who was consumed with guilt that they were not present when their loved one passed and blamed themself for anything and everything that happened in their loved one’s final days, including thinking that if they’d been present they could have “saved” their loved one.

While your friend’s father is alive, there is nothing you can do to change her mind, attitude toward or treatment of her father. She has to believe she is doing all she can for him. On some level, she knows he’s dying. Obsessing over his care may be her way of dealing with what she knows the outcome will be.

Be there for her when the inevitable happens. Have a list of therapists and grief counselors for her. She’s going to need them. But for right now, all you can do is step back and let her know you’re there for her.
Helpful Answer (12)
Reply to Ahmijoy

There are many, many who have posted on this forum who will tell you that their loved ones were murdered by hospice or the nursing home or hospital despite the fact that they were ill enough to qualify for those services. There are also many who have given up years (decades even) of their lives, abandoned jobs, spouses and children in order to care for a parent. I think there has to be a willingness on their part to understand why their feelings are so out of step with the norm, otherwise anything said will just alienate.
BTW, have you read Atul Gawande's book Being Mortal?
Helpful Answer (9)
Reply to cwillie
anonymous444729 Nov 8, 2018
I have heard of that book several times - do you recommend it?
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I agree with Ahmijoy, this is her way of knowing she did everything she could. If she doesn't, she may not be able to handle his death. May not handle it well anyway but will know she was there.

I agree, she is a little over the top here. Hopefully she has some Faith to help get her thru. She is lucky she had him this long. She really isn't being fair to him. She needs to let him go. She is going to be a basket case once he passes. Lets hope that his heart just gives out and they are not able to bring him back. She has to know that the body cannot live forever and his mind has already left.

All you can do is be there.
Helpful Answer (9)
Reply to JoAnn29

Perhaps shes is not in as much denial as you think, and is actually worried about his passing without someone there sitting with him and holding his hand.
It is a fear of mine.
Helpful Answer (5)
Reply to rocketjcat

You need to take off the "friend hat" and put on your "professional hat"
You need to consult with the family about your PROFESSIONAL assessment.
If there is a social worker you can talk to about this and maybe get them or a nurse to discuss the possibility of Hospice that might help. Many hospitals have a Hospice liaison that could discuss this with the family.

All you can do is inform the family what various outcomes may be in your "professional opinion"
You can present a variety of options that may work, Hospice, Palliative care (although I think any group assessing him would say he is Hospice eligible, but if the family wants to continue to pursue treatment Palliative is the way he would go)
One of the most difficult things in being a caregiver is coming to the realization that no matter what you do the person you are caring for will NOT get better. It can be difficult for a professional caregiver but even more difficult for family.

I hate to say this but as a professional you need to establish boundaries. I think that is one of the most difficult things about being a caregiver. I have had caregivers that become emotionally invested and some of the outcomes have not been good.
Helpful Answer (5)
Reply to Grandma1954

Allow the daughter to do what she feels she must do. To stop her will cause her immeasurable grief filled with regrets when the father passes.

I had a lot of people tell me that I couldn't do what I was doing for 3-1/2 years, but when DH passed, I know I did my best and all I could do. I still have some regrets but at least I know I was there for him 100%.

Let the daughter do what she feels she must do.
Helpful Answer (5)
Reply to RayLinStephens

You are correct that her insistence is causing further harm. I see it very often working in a hospital. Currently I have a patient for 11 months whose wife just had the house forclosed because she cannot leave the bedside. I once saw a psychiatrist who told a family member that we were treating the patient and not her.
You cannot help until she is ready. She has not yet hit rock bottom.
Helpful Answer (3)
Reply to MACinCT

It's her choice. She may not want to feel guilty after he passes that she didn't do all she could. Sometimes it's hard but its not your family. I would suggest you let them be. He will pass and she will have to move on. It is what it is nothing will change that.
Helpful Answer (3)
Reply to snidewoman

We need to walk a mile in the other person’s shoes. Everyone deals with it differently. I have a 93 year old father who has dementia. Everyone has different feelings when they are the caretaker.
Helpful Answer (3)
Reply to ebgranny

My guess is that she's afraid to death of losing her Dad, and the only way she can assure herself of his not dying is to be there constantly, micro- managing his care. I've been there, done this. I'm 1500 mi. away from my folks and just returned home after being with them for 6 mos. You know what? I lost my marriage and took a big hit on my physical and emotional health.
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Reply to bemitch53

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