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