Follow
Share

My husband is in advanced stage of Parkinson’s no dementia so far. However, as his PD affects autonomic dysfunction, he has about 40 or more symptoms. Hospitalized 8 times since late December. Advanced spinal stenosis, unbearable pain for which they increased and doubled hydromorphone and added about five different pills and it seems to work. Somewhat. Still in pain. And several infections, UTI, pneumonia and others. Delirium so bad at times I could not recognize him. However, they gave him additional doses of drugs in hospital, which probably caused delirium, as there's none at this time.


Doctors are reluctant to look any further, as one said they're afraid they would findmore. In other words, not much hope. Not dying, but end of life should be considered in the future. His blood pressure is 80/40, and he's experienced unintentional weight loss of about 10% in last 6 months. And general decline although seems to be better one day and then worse the next. Seems like his neurologist does not even want to see him anymore.


I wish there was some definitive explanation or diagnosis. I realize everyone’s journey with PD is different. First time I am facing such huge unknown and feel scared.


Anybody has any comments, words of encouragement or advice? Greatly appreciated at the moment.

It sounds like it may be time to bring hospice on board or at least have them come out to do an assessment, as what you've described I'm pretty sure he would qualify.
And while that sounds like a big step right now, it doesn't mean that he will be dead soon, but will give you both additional eyes on the situation, and any needed equipment, supplies, and medications all covered 100% under your husbands Medicare.
My late husband was under hospice care in our home for the last 22 months of his life, even though hospice thought he would die sooner than that.
Most people wait too long before they bring hospice on board, when they could benefit from their services much sooner.
And you can call them yourself to come out and do an assessment, which allows you to do your homework and bring the hospice agency of your choice on board, as not all hospice agencies are created equal.
I know you've been on quite the journey with your husband and that you're in it for the long haul, so stay strong and know that you've got this.
May God bless you and keep you.
Helpful Answer (6)
Reply to funkygrandma59
Report

Funkyg,
Hospice was here and if needed he can go to facility at any time.
With PD establishing EOL is not easy or drs are reluctant to say it.
We live in Canada so no Medicare.
Thanks for encouraging words, it seems as if I who was always strong suddenly feel hopeless.
Helpful Answer (4)
Reply to Evamar
Report
funkygrandma59 Jul 15, 2025
I'm glad that you already have hospice on board. I don't know how hospice is in Canada verses the US, but I hope that they are able to give you and your husband the support and care that you both deserve.
And I'm sure you're feeling hopeless right now, as the unknown can be very scary, but don't forget that you are stronger than you know, and that God will be right by your side the entire time.
(4)
Report
Thanks Funnkyg,
I am stronger I know that. I am problem solver. Hopelessness or unknown is the worst, scared of any event or infection which could spiral out of control.
Wish I was believing in God, I am stubbornly agnostic.
But appreciate you saying that God is on my side.
Hospice is very good in Canada, offers some 35 hours of caregiving weekly and other services. Got every possible scenario covered.
Helpful Answer (1)
Reply to Evamar
Report
JanPeck123 Jul 20, 2025
Evamar,
I was raised Roman Catholic, and if you know anything about their church, ours was so dogmatic and rule based that I almost pushed my faith aside. You said "wish I was believing in God".
My husband's health issues were what strengthened my faith. I don't wonder why a merciful God would allow this to happen. Instead, I believe that bad things happen, and it is a merciful God that cradles us in his arms when we pray, and gives us the strength to make it through.
I don't want to preach, but want to share my personal view on how belief in God provides strength and comfort.
(5)
Report
Eva, I am so so sorry 😔, I had my husband's health scare, and I had such a hard time holding it together, that week. I can't even begin to imagine what you are going through, I'm sure at times you feel as though you are hanging by a thread.

I read your agnostic, I consider myself more spiritual, not religious, I believe in the power of prayer, and the power of sending you hope, and love. So believe all of us here are sending you all are prayers and hugs and love, to help you get though this.

Also do the best you can to take care of yourself, if your not hungry, just eat when you can, whatever taste good at the moment, as long as your getting food in you for now. Breathe slow and steady, my neighbors PTSD dog taught me that. On way to hospital, I was hyperventilating and his dog wouldnt stop scratching me, unless I breathed right. So breathe.

🫂🫂🫂

Let us know , how things are going. 😥
Helpful Answer (3)
Reply to Drivingdaisy
Report
Evamar Jul 15, 2025
Daisy,
Read about your husband and I am sorry you are going through that as well as taking care of your Mom.
Thanks for encouraging words. You are so right about breathing and eating.
(0)
Report
My mom is almost 97 (much older than your husband, I assume). She has dementia and some physical health problems, has lived in a memory care assisted-living facility for about 1 1/2 years, and has been receiving hospice services for almost 1 year. She is in a general decline, with some downs, some ups, and so on. This year, there have been about five or six "episodes" during which it seems that she's at death's door. Then she's better a few days later. It's psychological torture not knowing what's happening or why and not knowing whether there's anything that can or should be done during the episodes. The facility staff are great, as are the hospice care providers. The hospice nurses give their best guesses as to what's happening (because it's hospice, very few diagnostic tests are done). At this point, I don't wish for my mom to get better or live longer; I do wish I was handling the unknowns better.
Helpful Answer (4)
Reply to Rosered6
Report
Evamar Aug 7, 2025
Rose red,
Sounds like my husband although decades younger.
Few close calls this year!
Wishing you peace.
(0)
Report
Oh, Eva, I am so sorry. I think that you have known, with all we have seen you face in recent month upon month, that things are not going well. There just aren't going to be any answers, and you can't avoid what is the downward trend. He has been of late in an awful lot of pain. His quality of life is getting worse. You know the trajectory.

Have you asked Medical if there are any support groups for you?
Are you on any on FB. I know that my cancer support group there is marvelous and a great comfort to me.

I am so sorry.
Helpful Answer (5)
Reply to AlvaDeer
Report
Evamar Aug 7, 2025
Alva,
Great idea, haven’t gone on FB for quite sometime.
I hope you are doing better, haven’t been on AC for a while.
(0)
Report
My wife of 64 years passed away four years ago from PD. A devastating disease for all! I found that my belief in a “Higher Power”…God, was truly beneficial for both of us, and family members. Acceptance and prayer and a belief in a loving God is truly beneficial for all during such times!
To accept and believe may be difficult in some instances, but peace and tranquility are some of the benefits gained by this attitude.
God is in charge…turn it over to Him and His Grace!
Seek His comfort!
John
Helpful Answer (7)
Reply to Otto124
Report
Evamar Aug 7, 2025
Otto,
So sorry about your wife passing.
Trust me I am humble enough.
(1)
Report
See 1 more reply
Being agnostic is a choice, and like most choices can be subject to change! You have nothing to lose by humbly dropping to your knees and asking Him to guide and help you thru this difficult time! Many of us, in difficult times, have performed this act of humility! It costs you nothing monetarily or otherwise and you may be pleased at the results and peace you receive! Give it a try!
John
Helpful Answer (4)
Reply to Otto124
Report

God bless you and give you peace and strength.
Helpful Answer (3)
Reply to JOANGRABE
Report
Evamar Aug 7, 2025
Joan
Thank you
(0)
Report
Dear Evamar,
I am so sorry you are facing this, and your husband is facing this. He's fortunate to have you by his side. My husband also has PD with some associated dementia. It's a horrible disease for sure.
I hope you have your husband enrolled in Hospice. If not, please contact the Hospice agency and talk to them about doing an assessment for enrollment. Hospice has changed and it is not just "God's waiting room".
My husband has Hospice at home. The nurse is fantastic and works seamlessly with the Hospice doctor. During the last 9 months my husband had medical issues that Hospice addressed. He was given Baclofen (muscle relaxer) to address pain when turned in bed for cleaning. He got a terrible yeast infection all over his back last October due to sweating alot. He also had a suspected UTI recently. Also a large angry sebaceous cyst under his left arm in the armpit. He had a terrible cough that was due to excessive secretions and not aspiration. If the Hospice nurse and doctor had not been available, I would have had him admitted to the ER for several of these issues, as due to his being bedbound, I can't get him to a doctor.
His neurologist is able to do video appointments, but I find the Hospice nurse and doctor to be more well-versed in end stage issues.
Yes, everyone's PD journey is different. The roller coaster of good days and bad days can make you want to cry. Hospice nurses understand the fear and frustration, and are able to have honest and compassionate conversations with you and your husband. Prayers for you, your husband and your family.
Helpful Answer (6)
Reply to JanPeck123
Report
Evamar Aug 7, 2025
Janpeck,
I read some of your post, I agree horrible disease and roller coaster for sure.
In regards to your second post re Catholic Church. I was raised as one as well. No you are not preaching, makes sense to me how your belief is stronger.
However, my view is completely opposite.
(0)
Report
Evamar: I am so sorry. Prayers forthcoming.
Helpful Answer (3)
Reply to Llamalover47
Report
Evamar Aug 7, 2025
Llama,
Thank you.
(1)
Report
See 1 more reply
Hospice or palliative care should be able to discuss your husband’s care and situation. They can use tools and offer advice that regular medical people just don’t have experience or training in. If for some reason he doesn’t qualify for hospice, definitely try palliative. I’m lucky to live in a town where the same physician is the head of both types of care and was able to adeptly describe both in caring for my dad. My dad died just hours before the official hospice intake, which was scheduled to take place once he was transferred back into his MC home. So he died in the hospital where they were compassionate and kept him comfortable, but I don’t think they recognized that he was having terminal agitation. If I’d known, I would have stayed with him overnight. Instead, he died alone in the wee hours of the morning. Even though he was never officially admitted to hospice, the lead hospice nurse spent hours with me helping me to process his death in the hospital after a fall and a non-surgical hip fracture. I owe my peace to the hospice nurse. I can’t describe enough how helpful she was. I’ve heard so many good things about hospice and palliative care, even friendships that lasted long after a loved one’s death.

Please accept care and support for yourself as well in this very heartbreaking time. I wish you peace and comfort.
Helpful Answer (2)
Reply to HonorAble
Report
Evamar Aug 7, 2025
Honorable,
Thank you.
(0)
Report
Dearest Evamar, my husband also passed from end-stage PD. Three years before his passing, he agreed to the insertion of a stomach-feeding tube since the PD had caused deformities of his spine and esophagus, making swallowing difficult. Unfortunately, the stoma caused other complications. My husband died about 10 days after removal of his stomach tube, and about 4 days after his admission to hospice. I chose hospice for my husband because I could no longer bear his suffering from chasing solutions to his ever-growing list of medical problems. Like your spouse, my husband was continually losing weight and losing blood pressure. It was just a matter of time, and all I wanted to do was to make him comfortable, while spending time with him. Once I selected hospice, the medical appointments stopped, the diagnoses stopped, the blood draws stopped, the ER visits stopped, and the multiple medications stopped. Hospice enabled my husband to receive end of life comfort care in the peacefulness of our home. With their expertise and guidance, we followed my husband's decline day by day and hour by hour. Surrounding him with soft music and words of love, my husband received the right dosage of sedatives and narcotics to dull his pains until they were no more. This quiet time allowed me the presence of mind to tell him how blessed I was to have him as my husband. There is no right answer - just cherish him for as long as you can. You and your husband are in my prayers. God bless.
Helpful Answer (4)
Reply to StillWorking
Report
Evamar Aug 7, 2025
Still working.
I am sorry to hear about your husband.
I am beginning to see the worst of choking in the last few weeks, my husband is absolutely adamant about no feeding tube.
(0)
Report
Given his low blood pressure, weight loss, and pain - please ask for hospice and palliative care referrals. Palliative care does not cure diseases but focuses on symptom management so your sweetheart can be as comfortable as possible. Hospice is more concentrated on symptom management for people with terminal illnesses - and your sweetheart has a terminal illness. The medical goals at this point in his life are: treat any infections as they occur, manage pain, and manage other symptoms that impair his quality of life.

If your loved one is lucid, it is time to have those tough conversations. Ask him how aggressively he wants his medical treatment to be: Do Not Resuscitate, limited efforts to resuscitate (CPR or No CPR, intubation or no intubation, mechanical ventilation or no ventilator, drugs for blood pressure or no drugs...), life prolonging treatments (iv fluids, tubes in stomach for food and/or fluids...), and give you legal power for medical and financial decisions. You might wish to also talk about celebration of life or memorial service - however I would suggest that you make these decisions without your loved one since the service is more about what gives you peace than your loved one's needs.

While with your loved one, be in the moment with him. Enjoy their presence. Try to create memories by bringing/doing what gives him comfort or joy. Some ideas to consider: listening to music together, watching movies together, reading book together, simple craft, enjoying treats they like, rubbing warm lotion on arms/legs, brushing hair...
Helpful Answer (4)
Reply to Taarna
Report
Evamar Aug 7, 2025
Taarna,
Great suggestion, thank you.
However all done and done.
NDR, no feeding tube, POA all in place, no funeral!
(0)
Report
The real question remains, how do you cope at the times of uncertainty, knowing it is only going to get worse. Much worse.
I, as eternal optimist but also realistic enough knew for years my husband was going to get worse. But until a year or so ago he had ups and downs but more ups. Maybe naive of me believing he will stay like that for a long time or for next ten years.
The progression right now is astounding, relentless and unpredictable.
The pain is spreading to neck, arms, hands or entire right side of his body. Despite higher morphine doses which is almost double since December.
Yet, he is mostly calm and extremely accepting.
I am the problem, I feel like I am falling into abyss, not depression or despair, maybe helplessness.
How do you remain good caregiver when you feel absolutely helpless?
I went through anticipatory grief and all steps, I have reached acceptance. But maybe not?
I am guessing I really don’t know grief at all as I never really experienced losing anybody at least nobody very close.
Helpful Answer (0)
Reply to Evamar
Report
AlvaDeer Aug 7, 2025
Eva, you can call it naïveté or you can call it "hope" to wish for 10 years. But you knew all along, I suspect, that this is completely unpredictable and it was a day at a time.
This "feeling" of pain is, if you go to pain clinic at all, almost certainly now something other than a thing with a "cause" and a "cure". It is a neurological pathway that is habitual, and likely won't be "cured" by anything other than hubby's demise.
I believe you not only now ACCEPT his death, but in many ways you cannot allow fully to surface you PRAY for his death and I know what it is to do that, atheist that I am.
And as a nurse I saw many many many spouses and children, pray for the same relief and release.

I am so sorry.
What help have you got in terms of something like a "cognitive" therapist? (Not talk therapist; there's no way talking yourself out of this. It won't happen, and repeating it to others and yourself over and over will simply cement it more into the wall of your brain).

I am so incredibly sorry. I truly am so very sorry. At this point, when it reaches this level, the more one can be "snowed" out of their own lives, the better. For me the "good drugs" can't be good enough until I am asleep and below the level of breathing. I am just saying that life becomes, sometimes, a crucible for ourselves and for everyone who loves us. With no respite for any of us, save our passing.
I think your despair and feeling of hopelessness (given the reality of the downward trajectory) is absolutely NORMAL. How on EARTH could you feel any other way.
It's something we discuss here often....those of us who witness true pain over any amount of time wish only for our loved ones AND OURSELVES to be relieved of that.
(2)
Report
Hospice or palliative care would be a great comfort for you. It's not just for the patient, it's for spouses and children as well. I wish you peace in finding what both you and your husband need.
Helpful Answer (2)
Reply to Fawnby
Report

I'm sorry are he is much worse, Eva, I think acceptance challenges and grief can be new everyday as your DH declines. I am sure you are a good caregiver keeping him as comfortable as is possible. I'm glad he is calm and mostly accepting

I agree that hospice could be very helpful for both of you. This is a one of the most difficult experiences to go through in life.
Helpful Answer (2)
Reply to golden23
Report

Something I just learned about, as another legal document you might want to have in place, is an Out of Hospital DNR. The DNR that most people sign is only applicable in a medical setting and if something happens outside a hospital and EMS is called, they will perform CPR unless there is an OOH DNR. Primarily because of delay in implementing CPR and other medical interventions, only 10% of people who have CPR outside of a hospital are revived and there is always the question of brain damage when they are revived (again, because of the delay in getting oxygen to the brain). So my husband (who has PD w/ dementia) and I (with generally good health) have signed OOH DNRs. In Texas, there is a very specific pendant or bracelet that will let others know of your status. Just something to consider....
Helpful Answer (0)
Reply to pamela78702
Report
Evamar Aug 24, 2025
Pamela,
Thank you. Have all documents valid in hospital and otherwise.
(0)
Report
Ask a Question
Subscribe to
Our Newsletter