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My husband has a rare autoimmune disorder - PSC - and Crohn’s. He has entered the palliative care stage. We have no children and his family is scattered across the country. We have a few good friends but we are the same age - Late 70s - and all sheltering in place. Watching a very calm stoical man suffer is difficult. It reflects in my blood pressure. My vulnerable area. Thoughts and advice greatfully received.

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My heart goes out to you and I send you my prayers. Ask for medical help for you to possibly help your physical implications. Try to get help from a good friend or therapist. Just try to be calm and peaceful and shed your love on him. Be grateful for the good days and know this too shall pass. I don't know what else to say.
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Imho, I wonder if you are able to connect virtually with some kind of support group, e.g. church, etc. that can assist you during this difficult time. Prayers sent to you.
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bronwyn75 Jul 9, 2020
Yes I agree. I am spiritual rather than religious. This is a forum where many have had to find their way in difficult circumstances, who have found their strength and courage by uttering their fears and sharing. It is a safe place to show ‘weakness’ and worry. I think it serves that purpose. Gives one the sense of ‘yes you can but...it cannot consume you.’ So, I think I have found it.
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Palative care does not want your husband to suffer. Confer with his P. nurse. It sounds like you are able to suffer for him and that may be what is happening. Hospice Social Worker can help you with that. The goal of palative care is "peace and comfort". The Hospice Chaplain can also help with "The Suffering". The nurse and Dr. deal with the physical sufferfing and the chaplain deals with the Spiritual Suffering. The both are important to treat and that is why the chaplain is on the team. Medicare requires a chaplain as they are a necessary for your husband to get Spiritual Help.
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bronwyn75 Jul 9, 2020
Thank you. Palliative care has begun. It permits the medication and treatment needed for his condition. He wants this. As I understand this road, Palliative care leads to hospice. In Hospice the meds he takes would stop accept for comfort. One of the areas of discomfort now are spontaneous painful cramps and spasms in his hands. Comes with the condition and the solution is elusive. An antispasmodic could do further injury to his liver. He is balanced risk medicine.
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Bronwyn, when my husband was dying of cancer, his doctor (not mine) gave me a prescription for Paxil, which got me through his dying at home. I didn’t think I needed it, but boy did I ever! Very mild. I strongly recommend explainly the situation to your doctor and asking if you need something.

I also highly recommend a stress break, at least once a week. I kept my Wednesday night bowling league. Family thought I was terrible, I didn’t care. Be sure to take care of you, so you’re husband doesn’t have to. Peace to you both.
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bronwyn75 Jul 9, 2020
I agree. Have started meditation seminars on line and am practicing breathing exercises. I can reduce my bp by 15-20 points (am on bp meds) by controlled deep breathing and ‘escaping’ in my head from the 24/7 worry. That is why I do not try and adjust my natural nocturnal schedule. My bp really spikes then. DH is wearing his LifeAlert during the night when he is up and alone. A mild anti anxiety med might calm.
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My wife suffered a stroke last Oct 2019 and I was put on high blood pressure medication for the first time. Thru the months of her rehabilitation in two hospitals and then in skilled nursing facility ( to call it skilled is a misrepresentation).
I was sent to emergency twice in a month with blood pressure spikes. _
You’ll have to be stoic yourself and stay hydrated and take time to sit down and take deep breaths. Moreover you might seek anti-anxiety medication to reduce the spikes. It took me a month to become stabilized .
Best Wishes.....
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bronwyn75 Jul 9, 2020
I, too, when husband was hospitalized for five days with spontaneous bacterial peritonitis while we were out of state. It was difficult to stabilize and I ended up in ER.
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I would switch from Palliative to Hospice. I think you will get more help and more support from Hospice. I know you will get more supplies and equipment if needed. As well as Volunteers. The Hospice I volunteer for is now sending volunteers into homes if the family requests it and there are volunteers available. (both volunteers and family members have to have temps taken as well as a "health screening")
You should also talk to your doctor about your health. An anti anxiety medication for you might help. With Hospice you will also have a Social Worker that might help you as well.
My Husband was on Hospice for almost 3 years so forget the "6 month" or fewer. As long as he is not seeking treatment for any condition that would make him Hospice qualified, as long as there is a "documented, continued decline" a person can remain on Hospice.
I am sure the group that you have Palliative care through is also a Hospice so ask about it next time there is a visit OR call and ask.
And you do not always have to be a cheerleader. Holding hands and telling each other..."This really sucks!" can do just as much as being a cheerleader. Knowing that you are there for him might be all he needs at times.
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bronwyn75 Jul 9, 2020
Thanks. Hepatologist does not believe hospice right now. Husband wants treatment and meds. Husband is making the decisions about care. Still wants all treatment.
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Check with your local Hospice chapter. They are no longer just for people with an expected 6 month life left. I just learned this a couple weeks ago. My Dad is healthy as a horse but in moderate/advanced Alzheimer's. He could live for years! But he was just approved for hospice care. Surprisingly, he did not qualify under Alzheimer's protocol (he was having a very good day that day!) He qualified just because he has had some physical decline. So check them out...they have been a Godsend for us.
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bronwyn75 Jul 9, 2020
Thank you. As I understand it he would not be able to take the meds he is taking nor have the treatment he is having under hospice but can continue both under palliative care program. He is self directing how much treatment he wants. At some point this will change most likely.
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Besides sitting by your husband, what do you do with yourself during this terribly socially isolated period?

Do you have a dog, or any other pets?
Do you garden?
Are you on Skype, Zoom, or any of the other communications media that are far too technical for me to get to grips with? (mind you, I know one lady with dementia who attends a weekly church meeting on Zoom. I was impressed!)

I just wonder if it might be better for your husband as well as for you if you try to spend less time watching him and more time on constructive distractions. How is his palliative care being managed?
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bronwyn75 Jul 6, 2020
Dear Country Mouse. No gardening-in a condo. No pets. We traveled and husband did not want. Husband’s day/night cycle have completely reversed. Part of syndrome. I am to bed by 10-11 pm and up by 5:30-6 am. He to bed at 5-6 am. I do Zoom with two groups so there is an outside connection. I walk early in am for about 30 minutes. Husband now wears a LifeAlert for the hours he is up alone. Needs more hands on care. We have just begun having visits from a visiting nurse and PT. Very strict dietary requirements. Breakfast at 2, dinner at 7-8 pm. I am exhausted. Trying to adjust to doing all he had done-car, mechanical malfunctions and I am. He is calm and patient but so worn looking and now has painful cramps and muscle contractions.
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I echo Daughter's words.

You CANNOT be a CG for anyone if you are not taking care of yourself. I know that sounds hard, and it can be.

Make sure you are getting sufficient sleep, to begin with. Talk to your dr if you feel an mild antidepressant would be appropriate.

Get out a little. With COVID, that has been hard. I know the days my DH decides to stay in bed all day (and he's NOT SICK)--it drives me bonkers. I have to get out if it's only for a quick drive and a stop for a cold soda. Or I simply shut his bedroom door and ignore him. (You, obviously cannot do that). But 'pretending' he's not even home is helpful.

I'm not a TV watcher, but maybe you can find a series to fall into.

Good Luck. Be gentle with yourself. Reach out to friends--the good ones will always be there.
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bronwyn75 Jul 6, 2020
Thanks - just need to vent about exhaustion.

I am blessed with friends from childhood but we are all geographically remote and they, too, have issues. I try not to burden them.
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Cheerleading time is over. It is time for honest sympathy and honest discussion with you man about what he wants now. Does he want hospice and heavy medication? I would. And I would want someone to say the truth. And I would want to be able to express my wish to exit what is now only suffering. It is very difficult to "try to be strong" for family and I saw many patients suffer because they had to carry the cheerful banners while in deep suffering and wanting to go. I was privileged to hear their private thoughts, thought which I always wished they could have shared with family. With reassurances given that the suffering is recovgnized, that the hopelessness is seen, that the wish to exit is not only understandable, but appropriate, with the support for the times are real. Let him take the lead. Let him speak. Share what were good times for you both. Get the GOOD DRUGS. IF that is what he wants. Don't force this discussion, but be open to it. Try to stay in silence so he can speak. It is handholding time, reading to him in bed, watching TV, remembering. And do know, when people decide they want to go now, they can be known to withdraw. "Turning the face to the wall" is an ancient expression, but it is what happens. The dying is something often not shared, even with someone close. So sorry for the grief, but most of all sorry for the pain.
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bronwyn75 Jul 6, 2020
His hepatologist states not a candidate for hospice yet. Has a 50% chance of surviving a year. DH wants to continue whatever treatment meds. He self directs.
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Taking care of yourself is imperative, not just a cliche. See your doctor and tell what you’re expressing here, your concerns about your BP and needing to be a good caregiver. There’s likely a need for a med to support you through this time, and certainly nothing wrong with taking something. Also, I hope you’ll get some help in for you to have respite a few times a week. Even in Covid times I think it’s worth being careful and following hygiene guidelines to have help and a break for your own health. I wish you the best
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bronwyn75 Jul 6, 2020
Coming to think I need something to reduce anxiety. Trying to stay calm and focused. Thanks.
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