Hi. I am hoping this makes sense and someone else will help me understand. I will give more detail if asked but I’m trying to keep it as short as I can. My dad came to live with us in 2018 and was already diagnosed with Parkinson’s and dementia. He was fairly easy to care for and when it got tough I would remind myself how he cared for me as a baby and now it’s my turn. He fell two weeks ago and broke 3 ribs. He was admitted to the hospital for trauma care and released 4 days later. His dementia went into overdrive. When we brought him home, he was on oxygen and so out of it we thought it was the pain meds he took 8 hours prior. We put him to bed and took turns watching him. In a matter of a minute he woke up and tried to get up and fell to the floor. We called an ambulance and he was then admitted to a different hospital. He was hallucinating, and very tired and lethargic, although he did manage to pull out his catheter’s many tests were done and the doctors diagnosed Lewy Body dementia. Palliative care team arranged a nursing home with hospice care. The day after he was admitted I went to see him and suddenly he is lucid. Asked why he was there, said he promises not to fall again, I left there scream crying. The hospice nurse said they will try and help him be more comfortable. Is this normal? Am I killing my father? Could all the professionals be wrong and I’m the only one who thinks he might be better? Is this guilt, grief, hope? Is this normal?
My mom just died in hospice a few days ago. Four days before she died the hospice nurse came (to her house) and she was perfectly lucid, and was arguing with them, (as per usual). Since she seemed so well, when I called hospice begging for help over the weekend they didn't come, because they didn't think she was even transitioning yet. So she died in my sole care without instruction or support, although she did have comfort meds.
At least inpatient this will not happen to you. People will be checking him regularly, and if he is in fact dying he will get the care and comfort he deserves. Parkinson's with lewy body, broken bones, and need for O2 sounds like a tough road to come back from. But you can still get a 2nd opinion, input from his PCP and other specialists who have seen him. Hospice can be revoked, but in the meantime they will not allow him to suffer.
Guilt assumes that you CAUSED this and you did so with MALICE and that you can FIX THIS but you refuse to.
You didn't cause it.
You don't have evil intentions.
You can't fix this.
So guilt is out. And words you tell yourself are important, so it is critical that you start using the correct word here which is GRIEF. You are suffering. You are suffering because:
You stand witness to your father's suffering
and you can't fix him
and there is no answer to this but pain and being forced to witness the pain.
Isn't that worth grieving? Join your father in his tears and fears because that is what it is about.
Educate yourself about Lewy's, and do know that yes it can come and go quite a lot in symptoms.
Visit and support your father and adjust to the fact that there is no happy-ever-after in aging.
You are responsible for children YOU bring into this world. It doesn't play backwards. It plays forward so that your own children will not be responsible for YOU, but for their own children.
I am sorry. This is tough stuff. There is no good fix-it here. This is just sadness ongoing, and you will have to get through it recognizing that it is indeed sad, and that relief comes with loss of your beloved dad.
There is no getting better with any of the dementias, and Lewy Body dementia is the second most aggressive of all the dementias with a life expectancy of just 5-7 years.
I'm glad you have hospice on board as they will try and keep him comfortable and pain free as he transitions from this life to the next.
Just be there for him and leave nothing left unsaid.
God bless you.
And you have NOTHING about which you should be feeling 'guilt'. You didn't make him get old, fall down, have LBD-nothing. What he is experiencing is HIS life and you aren't doing anything but loving him.
As far as Hospice. It is NOT a death sentence. It's more a support team to help the patient and family through the EOL times.
My MIL lasted a solid YEAR on Hospice. After the initial "Oh my gosh!" and everybody rallying around her--she continued to live and very slowly decline to the point we were praying for her to go. It certainly bought the family time to come to terms with her impending death.
She had moments of lucidity, but mostly was checked out, mentally. That became the hardest part of the whole thing.
I would suggest that you look at placing dad in an ALF, for your sanity and for the kind of care he is going to require as time passes.
IF you can't go that route, then I wish you all the best in the role of CG.
Grief? Yes.
Normal? Yes.
Regarding Guilt, try to let this go. You didn't casue his Parkinson's Disease. Neither can you fix it.
It is OK to be hopeful. Some delerium may lift & there be more lucid days. Wait & see.
Any crises, new illness, infection or fall can cause delrium in people. Especially when elderly. Especially if dementia is already present. (This is my opionion based on my reading & experience).
Delerium can bring the hallucinations you mentioned. Many people, even health professionals have trouble distinguising from dementia & delerium & may use either word.
Yet, Parkinson's Disease is a brain disease & is progressive.
Sympyoms vary accross people: mood, depression, alterted sleep, stiffness, increased falls due to muscle & brain changes. PD can cause dementia too. Lewy Body is the most common type with PD. Not everyone will get it as again, PD symptoms vary.
Sorry to be a bore with this dry stuff. I have no idea if dry facts will help you.
Just visit. Love him. ❤️
They reach a point where it becomes impossible to care for them at home any longer.
Placing my mother in an end of life hospice care home was the best decision for her and our family.
It’s natural to feel sad that a parent has lost their independence. You’re sad and blaming yourself. You’re carrying a burden that isn’t yours to bear. You didn’t cause the illness and you can’t produce a cure for it. Nor can you reverse time.
We all get a certain number of days allotted to us on this earth. After that, it’s over. No one can do anything to change things. Sure, we might be able to delay the end for a while, but we are all mortals without any super powers.
Transitional times are always the worst. Once you come to terms with the reality of your situation and accept it you will find peace.
I will keep you in my thoughts. This is close to my heart because I know what you are going through. It’s really hard to see someone we love suffering with Parkinson’s disease.
Unless a person has been through this themselves they have no idea how hard it is to watch someone suffering from the end stages of Parkinson’s disease.
My mom lived to be 95. She was ready to die much sooner. She wasn’t afraid of death. She didn’t want to suffer or be a burden on their family. She was very appreciative of being well cared for in her hospice care home.
Wishing you peace during this difficult time in your caregiving journey.