Missed another doctors appointment yesterday. Luckily next week is phone appointment. He had brain surgery on benign tumour last year and pituitary gland needs building up so he takes meds for that but doesn't seem to care except when I'm there four days a week to give him meds & he forgets or doesn't want to take on his own.
Had physical therapy four months ago coming to home and he could use walker five feet, since he fired them, doesn't have strength to barely get out of bed into power wheelchair. I've got all the nescessities to make things easier for him but get angry he gave up when stopping therapy. Now all is on me. I got more hours through agency that pays me for his care, but all I want is to not see him give up and go downhill so quickly. This is frustrating because now he's not even strong enough to transport in van and although reality and inevitable, too soon when I know if he wouldn't have fired therapists, he'd be more confident on not falling, balance issues are a big issue & it's killing my back no matter what right strategies I do. I cry when fire department has to come and help me because dad worked with me before and I was stronger also. What do I do? He doesn't want to go to a home. And I wouldn't want heavens gate as an option either. But how can I discuss this with him?
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As a nurse I don't know how many times I had to try to get a family to understand that in the end our elders get tired, exhausted with illness, with struggle, with loss of control and mobiliity and desire even to eat. They are exhausted with life and ready for peace. They try in a hundred ways to tell their families, but often the families refuse to hear them. They are weak and so very tired.
It is time now to discuss with your father what HE wants for what is probably the end of his life. If he wants Palliative care, hospice, then that is what he should have.
If you are not a member of Al-Anon, do consider it. It looks as though you have excellent insight into what happens. Your Dad may no longer be drinking, but the personalities and family dynamics don't always stop with the flow of the alcohol. You need support and will get some at Al-Anon. It may be necessary for Dad to move into care now, so that this endless struggle for control doesn't consume both of you in his last time on earth.
I wanted to recommend that you read Dr Atul Gawande’s book “Being Mortal, Medicine and What Matters in the End”
I think it’s such an important message that he shares and it might really be a blessing to you and your dad. You seem to be caught in a struggle that isn’t working for either of you.
A Frontline PBS movie. “Being Mortal” was based on this book. It’s about an hour long on YouTube. Several of his interviews and talks are online as well.
Another poster told me she was listening to the book on
audible.
Dr Gawande helps us realize that by opening a conversation with our loved ones we can make the best use of the time we have left with them. He recommends we start this dialogue 10 years before we die!
The reality is that we wait too long if we start at all.
He acknowledges that it’s hard to have these talks. It was hard for him to have it with his parents and all three of them are/were doctors.
But it is worth the effort to try. He explains we may need to have it many times. People change their minds about what is acceptable to them.
Dr. Gawande wants us to understand that the goal is Not to have a good death. The goal is to live our best life for our entire life, right up to when we die.
To NOT spend our last days trying to prolong our lives with procedures and treatments that take us out but rather to think about and discuss what’s important to the person and what gives them joy or completion. To Discuss their goals and to help them uncover what is important to them.
He gives five questions that are being taught in medical schools for how doctors should start these talks with their patients and he encourages all of us to use these questions as conversation starters to talk to our loved ones. Not to push our agendas but to help them realize their own.
Despite all the best medical care, none of us can escape aging or dying. For the sake of your poor back, get on the same page with dad so the two of you can find relief.
Dont work against him but choose again for your own life which may help him accept where he is now and what his true condition is.
That’s probably a harder job than getting him up off the floor but it is necessary.
What you are doing now is not sustainable. Hoping you find peace in transitioning through this last phase of your relationship with your dad.
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I have quite a few in my family and my husband’s family that felt the same way as your sweet grandmother.
I think that most people are very aware that their time is near. They are tired and simply ready to go!
But I feel that adjusting to this situation is key. That your Dad has become an old man - in poor health. His state of mind is his own - it is not within your power to fix. I feel you want want to rescue him from all this. I'm not saying to give up all hope, but by accepting where things are maybe you can enjoy the present more.
What sort of support do you have for yourself? Friends, religious elders, therapist? Adjustment to change tales real energy. As does grief. Grief at losing the younger, fitter version of your Dad.
No doubt you are doing everything at your disposal to make life as good for dad as you feel you can. Kudos to you for working so hard--
Now for the truly hard part: he may be ready to die, whether you are ready for him to do so or not.
People are not made to last forever. That is the great equalizer. We all die, sometime. Sounds like dad has decided to do that sooner rather than later.
I remember so well, when my Gma was in a NH, just prior to her passing. She was actively dying--couldn't feel her limbs, certainly couldn't get up and walk--and these CNA's were so perky and upbeat I wanted to slap them. Everyday it was the same story "Oh, Alice, we're going to have you up dancing by the weekend!" She'd look at them like they were idiots. After one left one day, she looked at me and said "I'm DYING and I'M FINE with it. Why are they forcing me to eat and try to do exercises? I'm READY to die"
I had zero say in the situation, but passed that along to mother, who had me go with her to talk to the DON and the 'talk' changed to just keeping her comfortable and not forcing food or drinks at her.
She passed peacefully in her sleep a couple days later.
Lack of communication was really evident here. Is that maybe what's going on for you? Can you openly and honestly TALK to your dad? My dad wanted to die with some dignity--and he decided on Hospice, against mother's wishes. We all think we know what's best for our folks, and the truth is, you probably know in your heart he may be ready to go and you're not ready for him to do so.
I don't know your situation. You say 'all is on you'. You have no sibs or family to help, and no outside aides? That does make it hard.
This is a hard conversation to have, but you NEED to know what dad's true wishes are. W/O PT and help with walking, he will be 100% bedbound very quickly.
Look deep into your heart before you talk to him about this. You may be surprised to find that he is done with this life. What YOU want and what HE wants may be 180's apart. I hope you can meet in the middle on this.