Hi - I really need input about end of life

sixcats

My sweet husband is nearing the end. I feel so alone. We’ve been married for 24 years. No kids. What family he has walked away when he got diagnosed 6 years ago. He resides in a memory care facility in Los Angeles where they take really good care of him and love him. He was only 59 when he got it and now he’s 65. Had a very recent hospital admission for signs of pneumonia. The hospital made him much, much worse. Bedsores, etc.

I have no support team. If he passes soon I honestly don’t know what to do. Any input I would most appreciate. Thank you, Janice

[email protected]

Lkrielow99

I hate this disease. You are not alone, we are here and listening. Your heart will lead you, hold on. Others will have much more to say. Much love to you.

SDianeL

so sorry. I lost my husband in August and know how you feel. Even with family and friends it’s a lonely journey. Is he under hospice care? If not contact them right away. I would stop all treatment and no more trips to the hospital. Why put him through that. Hospice will help you and they have grief counselors. He would want you to go on. My wise Mom told me once that when someone you love passes, do things to honor their memory and live your live to honor theirs. I made a list of things I will do to honor my husband. Someone posted this on Facebook when I lost my husband. “Grief is the price we pay for love.” I’m Praying for your strength and comfort during this time. 🙏❤️

CatladyNW

I lost my husband in October, and, like you, no children or family close by. As @SDianeL said, contact Hospice immediately. Hospice was wonderful, in making sure my DH was comfortable and in supporting me as well. Hospice includes bereavement counseling and resources, so be sure to ask about it. There is another discussion board here, Supporting Those Who Have Lost Someone, where you can ask for advice and support. Sending hugs.

clarinetist

Janice, so sorry you are experiencing this and dealing with it by yourself. I’m in a similar situation. My husband, 69, had aspiration pneumonia in October and had a big decline. He’s now in a nursing home and I called in hospice at the same time. Hospice is great-it’s paid for by Medicare, and provides free incontinence supplies and medications. But most importantly it means an extra set of eyes on my husband. A hospice nurse visits weekly and a CNA twice/week. The nursing home CNA’s have been diligent about preventing bed sores, changing his position frequently and checking him daily for red spots.

I don’t know how much time I have left with him, and it’s a very sad time. Next week I’m meeting with a funeral home employee to prepay for his cremation so I won’t have to deal with that when he passes.

Just FYI, you may want to edit your original post to remove your email. Most folks here are wonderful, but this is a public forum and sadly there could be bad actors lurking.

My heart is with you and I hope you keep posting. This forum is a great source for support.

Jeanne C.

I agree about hospice. They’ve been so helpful. Not just for my husband but for me. The social worker found me a therapist with dementia and hospice experience. The chaplain helped me with funeral planning. They’re my husband’s team but they look out for me, too.

My situation is similar to yours. My husband of 25 years is now in stage 7 after a fast progression of bvFTD. He’s only 66 and in memory care now. We moved to a new home just before he was diagnosed and I’ve struggled with meeting people and finding activities. I’ve literally had to force myself to be social even when I just want to stay home and cry. I joined a book club. I go to social events at the clubhouse in our development. The biggest one for me has been volunteering. I work with the Association for Frontotemporal Degeneration (AFTD). It keeps me busy, out in the world with people, and lets me do something positive for people with dementia and their families. Just find one little thing to start. Then keep building on that. It’s hard but you’ll find your way.

And be gentle with yourself. Dementia is the hardest thing I’ve dealt with so I’m learning to give myself a little grace.

Quilting brings calm

You can remove your email. There is a messaging service within this forum. Just turn your notifications on and you will get an email from Al connected when someone messages you.

Hospice is wonderful. Our hospice nurses started coming twice a week and then eventually every day for 9 days. The nurse visiting yesterday (the day mom died) saw her late morning, visited a fellow resident, came back, was with us when mom passed and never left the AL building until two hours after mom died. She called the coroner and the funeral home.

Hospice ordered a bed, a bed dinner tray, oxygen, tubing, Depends, other diapers that taped on, wipes, bathing supplies.

sixcats

Thank you all SO much. Sadly, I ran into some issues with hospice care here in Los Angeles. The guy who runs the team is an incompetent moron. Not a medical professional at all. I doubt he even graduated from high school. All they want is to charge tons of money to Medicare. My husband is doing better after he was released from Cedar’s Sinai and transported back to Silverado Memory Care. Cedars almost killed him. The staff at Silverado are excellent medically qualified caregivers. They are doing a much better job than the hospice team who pushed and pushed me to sign my husband up. They want money. Everyone I have gotten to know over these past 5 long years at Silverado ARE his hospice team.

sixcats

sixcats

Time to vent. I finally relented to hospice care for my husband, age 65. I have serious health issues of my own. I am 74. This crazy hospice team assigned to my husband are completely incompetent. First, they don’t speak English, second they all seem to be twenty years old. They left SEVEN messages on my voicemail within a span of 45 minutes. I’ve already spoken to them numerous times and answered all the painful questions over and over again. I finally unplugged my phone. I still stay in touch with the facility he is in at this time. He’s doing okay at the moment but clearly the end is near. Two hospitalizations in two weeks. This incredibly stupid hospice team are adding even more torment. I am in agony. And anger. Yes, my beloved Jim, has so little time left. Dammit to all the stupid people on the planet who are incomprehensible morans.

sixcats

fmb

https://alzconnected.org/discussion/comment/231503#Comment_231503

I am so sorry that you are having such a difficult time with the hospice provider. Please consider contacting another hospice provider and having them come out. If you are not sure who has a good reputation, ask the facility staff. They know. Given his condition, a new provider should be able to provide an evaluation and begin services very quickly, especially if you explain the situation with the other provider.

Praying for a painless and peaceful passing for your DH and that you get the support you need. (hugs)

sixcats

Thank you for your input. I do not have a clue how to find competent hospice team. We live in Los Angeles. Janice

Joe C.

I am sorry you are having this terrible experience with hospice. I agree with the comment above suggesting you speak with the Memory Care management team about there recommendations for a qualified hospice team and speak with them. A good hospice team is not just beneficial to the PWD, their family but also the MC staff. It would be in the MC’s benefit to help you find appropriate hospice care.

MN Chickadee

There are likely many hospice companies in LA, and another one might be a much better fit. I would ask the facility nurses for their favorite ones to work with, I'm sure they have plenty of experience. You can have him evaluated by as many as you want before choosing one. They can be helpful to both the patient and the spouse, and may have some grief resources for you. I'm sorry you are going through this difficult time.

eaglemom

Please bring on a new hospice company. Clearly this one is not working out for you and you aren't forced to stay with them. I'm so sorry your going through this with everything else. Hospice should be a wonderful thing to help you out.

Make some calls, ask nurses & friends. Someone has used a hospice company that they appreciated.

eagle

midge333

Agree with above suggestions to seek out a different hospice organization. Another think to consider is to make sure you have limitations for care. No more trips to the hospital, do not resuscitate, no antibiotics, etc.

SDianeL

so sorry you are going through this. My husband passed in August. He went downhill quickly and we didn’t have time to contact Hospice. I should have done it earlier. The facility implemented hospice protocols immediately 2 days before he passed. They asked if I wanted him transferred to the hospital and I said no and they started him on morphine. Talk to the facility and ask for their help. I talked to the head nurse and a social worker. 🙏