Hospice is often the right choice, comes with some very helpful services. A warning from a friend that helped us with my Mom’s hospice time. After comfort meds/morphine starts (which may be a long way out), the patient may be subdued and no longer acting like self. Best to have the important family visits before then if possible.
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Different hospices have different rules. We chose the one hospice in our state owned by an MD, which both my lung doc and a family friend recommended. They allow the patient to keep his/her md plus have the hospice md. the other places we spoke with required you to only use their md.
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Thank you for sharing that.
My mom didn’t want me to be part of the meeting when hospice started with my dad (this was 3 years ago) and so your words are helpful to those who may be reading and unaware.
I didn’t know that and wish I had.
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You know… the hospice reps (who I really liked) actually did not mention the possible impact of the meds/morphine. It was a friend who gave me a heads up that her mom had. not been quite her same self once after starting the meds. (To be fair, patients are often not their same self when in pain… so may just be an inevitable sad part of the last days).
They did not mention this at my father’s hospice either – or perhaps we did not 'hear" when they did. He was asleep/unconscious for the last three days of his life. The week or so when he first entered hospice were the last ones where he knew us, and where he was , but mostly he was angry to be there with occasional bright spots. So look for those spots, and hang on to them. I cherish two memories – him eating yellow beans I brought from my garden becuase he loved those, and I read to him from his favorite book just a couple days before he died. Someone here said to think about what you need, and even when it doesn’t make sense, you’ll be comforted to do that. So I read to him when I wasn’t sure he could hear, and held his hand while I did it, and it has been a great comfort indeed.
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Just an update - another death - but not a spouse yet I’m sharing here.
Several years ago, I re-connected with a friend from high school. My DH was aware that this person (this guy!) needed support and I spoke with him 2-3 times per week. I felt like I has his coach and tough-love-mom. When DH and I had long drives, we would call him to check in together. We were 1000 miles away.
He (call him R) had a very challenging life. He was abandoned at a young age, his family was dysfunctional at every level, he had constant anger issues. In his 30s he and his wife had two kids. His wife died of breast cancer at 37. He was a veteran.
He lived paycheck-to-paycheck. He made poor decisions. He was diabetic. He made me his Medical POA for his amputation in June of this year.
Our phone calls were good. Our friendship was important. He was on my commuter-call list of friends.
In October, we were on a call when he had to get off to take a call from his lawyer. For the next few days, I was unsuccessful in reaching him. Finally I called in a welfare check. His neighbor had his cellphone and informed me R had been taken to the hospital and was in very bad shape.
He was in a civilian hospital in southern Florida. I don’t have POA papers. I’m just in the files at the VA Medical Center. I kept calling the civilian hospital to tell them he was a vet and the VA had his files. Eventually they transferred R to the VA hospital which immediately involved me. With two trusted friends, over 2-3 weeks, we made the decision to move him to hospice. He passed Friday morning.
These trusted friends have been an amazing team. We are in three different states; we grew up in the same town in New York. We bring different aspects of R’s friend group. At one point I insisted on a meeting for the three of us with the hospice doc and the Medical ICU doc to make sure we were clear about the road ahead in hospice. I was able to FaceTime a goodbye call. The other woman in the group made a long drive to say goodbye. Our guy teammate couldn’t do it, but he will be instrumental in our final goodbye at the cemetery.
With one small but great exception, his family has been unwilling to step up. When I could not reach his daughter or son, his son-in-law told me to never call again. The VA will only release the body under my direction.
The family exception? R’s distant older relative found someone who could take the well-loved dog. Still this was a challenge, because we needed to get the landlord to let someone in to the apartment to take the dog. Luckily that worked beautifully. (R’s pro bono lawyer would not tell me who had rights to the dog, so we went ahead with our own plan).
We have also had to navigate Facebook. R had many friends and some were quite bold in what they wanted to know — and why he put me in charge. (Luckily he had done a post on me in September, about our friendship and how I helped him with challenges, and he specifically said I was his medical POA). I stepped back and hospital-status messages were posted through someone else.
The past 6 weeks have been crazy. Add this to the rest of my year with DH’s passing, senior care (for the 93&97 year olds), etc. yet this feels like what I am meant to do right now.
I don’t cry often and I wonder when it will all overtake me. Maybe I should have posted about this trauma weekly rather than waiting til (hopefully close to) the end.
We are navigating how to do a suitable burial of cremains, with his wife, states away, with family dysfunction! With the tight friends team, my heart is full with our trust for each other and what we have been able to accomplish for R.
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I’m so sorry for the loss of your friend. What a blessing you must have been to him. 
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You are an amazing friend. 
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I can not imagine how thankful your friend was for all your love and friendship. You have gone above and beyond, and a wonderful friend. To be doing all this after the year you have had is admirable; sounds like you were meant to be a caregiver.
Thinking about you especially during this holiday season. Sending peace and love.
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What an inspirational story of caring friends. Thanks for posting. Sorry though you’ve had so much to deal with this year.
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Wow @Mom22039 ! R sure was lucky to have you and the other friends to guide him. I’m so sorry for your losses and hope you are able to find peace and serenity with your friends and family.
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We (Mom, siblings & spouses) have settled on a timeline to clear and sell the house, so that feels like a hurdle cleared.
Years ago, my father recorded a radio show on cassettes – he had a niche musical love and word gets around in a small town, so he did a show for the local radio station once. The station no longer exists.
This weekend, DH found the original cassettes in a box Dad had given him. He converted them to mp3s and CDs for us to all have copies. Listening to his voice again was really hard – harder than I knew, but it is so nice, too?
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I can’t believe no one posted over the holidays. I am feeling some kind of way, mostly good.
On the parents caring for parents thread someone posted Thursday night about potentially giving Seroquel to her mom. This brought up all kinds of things for me, especially with my kids having left that same day. I was a little upset that I didn’t remember all the details around my mom and her Seroquel, but I truly feel like we were so exhausted physically, mentally and emotionally and not remembering was my brain trying to protect me. I had a good cry about it all on Friday.
And then today I went and closed the remaining account tied to my mom and disbursed the money to my siblings. This feels so final and also like such a relief. I am so glad to be able to look forward and not feel tied to any of it. The holidays and that crappy year are over, and I can feel freer to look ahead.
The Chase branch manager offered me a calendar. I took it, because it reminded me how my mom would somehow manage to collect 20 calendars every year! I brought it home and opened it up, and each month is a different Chinese character. This month’s theme is new – “The new year brings new joys and rejuvenation for all.” I feel seen by the freebie, cheesy calendar.
Hoping that we all find peace in the new year.
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This was my 4th Christmas without my parents. It is getting easier but I’m still having my moments and definitely had a good cry.
That said, I’m so grateful to not have the stress and anxiety of caregiving anymore.
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I felt like everyone was maybe sad, and me saying I was sad wouldn’t be helpful?
I think I have become used to the hole in my life, so it is a little easier. We are working on selling the house, at mom’s request, and that is just the hardest thing right now. It feels like we are giving away our whole life — of course rationally you know that isn’t true, but it’s awful. I was not ready for how awful.
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We were very fortunate that my niece was happy and able to buy my parents’ home. It’s a lovely location and they were willing to do the work to make it a wonderful home again. It’s very comforting that it remains in the family and we visit it and her often. It would have been more wrenching if it were sold to a STRANGER! Best of all, it’s a perfect house for her and her H and D and the large dogs they have.
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I can imagine. My parents moved to Missouri when I was 13, and I hated it, and that house. I left for college at 17 and rarely went back. So imagine my surprise when I got very sad walking through the house for the last time. So if you loved your childhood home it must be 100 times worse.
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When we were up in DFW to have dinner with my sibs, my kids and I drove by mom’s house. We were so excited to see through the windows from the car that they have taken down one wall and added recessed lighting. I can’t wait to see all they do with the house!
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We bought our home from an elderly widow who had planted hundreds of daffodils; for years in the spring I would take her a big bouquet (she moved a care facility in our same town).
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Hopefully the house won’t be frigging TORN DOWN. My parent’ house (built in 1972 when I was 10) was on a corner lot. The new house that was built is situated so that the mailbox is on the other street, so the address is even different! Zillow still has photos of our old house. I’ve contacted them multiple times but they say I can’t do anything since I’m not the new owner.
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