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My sister that was her main caretaker just passed away unexpectedly. She was an alcoholic and took too many prescription drugs so we’re not sure how she died yet. She was controlling when it came to mom’s care. I was at a lot of the dr appointments and visited weekly but she took care of everything else. Now I'm the caretaker and so confused and overwhelmed. Not only am I grieving the loss of my sister but I have to be strong for my mom. When should I call in hospice and what will it be like?

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First of all, please accept my condolences for the loss of your sister. I just list my mom in November from a terminal lung disease and struggle with this loss everyday. However, I placed her on hospice about 8 months prior to her passing and honestly believe she was here longer due to the exceptional care and support she/we received along the way. She became so close with her caregivers that she looked forward to their daily visits, even on her worst day’s she refused to cancel their visits. I learned from them after her passing that they had a special relationship. Closer in areas than I thought I did with her. She was able to talk to them in WSU’s she want with her family and I’m so grateful she had that. Also with hospice, my mom was able to stay in her home all the way through the end which was important to her. The hospice team was a god send blessing to us all and was there for us through the whole process, even still now 3 months later with a kind follow up here and there and special memorial items. Best decision we ever made and I know for a fact that my Mim felt the same. She was so grateful to have them. I highly encourage you to get started. They are there for the patient AND the family/caregivers. You need the support too, believe me. This is one of the hardest things I e ever been through so to have this kind of help was a true blessing. Hospice can also be there 7 days a week, if needed. Medicare covers all the services and meds needed. You save so much money as they also deliver the meds to you with the nurse visits. Docs, nurses, aids come to you making it easier on the patient. They even offer things like in home meditation, music and aroma therapy, etc. anything to provide the patient with “comfort care”. I’m happy up share more info or anything else during this difficult time. My thoughts and prayers are with you. Take care of yourself too. Bless you and your mom.
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Tellie4 Jan 2020
Thank you so much. You have really helped me. This has been a rough week. When I want to just go home or go visit my grandkids for a hug I can’t. I hope I get thru this a do a good job for my mom but I’m feeling so alone. I have a very supportive husband but don’t want to burden him with this struggle. He has enough to do in dealing with his own mom who is 87 and runs circles around me. She’s very demanding at times but a sweetheart. Thank you again.
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My brother Jay and I took care of my cousin Pam with lung cancer. Hospice was great. She started out on home hospice. She requested to go into a hospital hospice room for the last two weeks. Pam was a RN. She made all of her own decisions. Hospice kept her pain at a minimum, but she was not overdrugged. She was awake and cognizant until the last day. She told my brother Jay and I what she wanted until the very end. We did our best to carry out her wishes.
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As an old retired RN who saw Hospice come from the UK to the US I can say it is much changed. In facility it is quite good still, with personnel there. Outside it has become a money maker part of the Military Industrial Complex (but what has not; even our schools have). I would try to get recommends from people in your area as they can vary. Usually now it comes down to hours. This many hours to help with bathing and house. This many hours for RN. Where they are failing worst is end stage with shut down of organs, confusion, and too often family left in charge of things and without proper training and knowledge. So just know that they VARY and are not at all what they once were, but that SAID, they are much better than not having them. You should discuss with your Mom if she is able to discuss this, and you should start getting appointments with hospice right away. Start with your Mom's primary Doctor, with your wishes ongoing for palliative care if that is what you want, and with recommends. Then start seeing all hospices after you have his agreement to GET hospice (you need that). If he balks tell him that you fully realize he cannot guarantee your Mom has only 6 months to live, but that is the most likely screnario, and if she doesn't die in 6 months you will address that issue at that time, whether to reapply or whether to do no hospice. Tell him it is now QUALITY versus quantity of life; that you expect good pain control relief and want the extra help hospice will provide. If you are lucky enough to get in-facility (due to you work, cannot be there, whatever the thing is) then definitely do so.
Wishing you every good luck. Wish this was still what it once was with dedicated personnel of every kind at the bedside and frequently in the home. It is not.
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I am so sorry for this time in your life. Losing your sister and your mom being so ill has to be debilitating. Sadly your sister, the caretaker, passing before your mom, is something that happens quiet often.
I would call hospice as soon as possible. People tend to wait too long. In other words they can get support sooner rather than later. There is no advantage to waiting. Perhaps begin by asking for a referral from your mom’s doctor. I found just talking to hospice personnel over the phone helped me immediately. They will come to your home to support your caregiving if that is what you want. There are hospice facilities where mom can be moved and sometimes a special part of some hospitals or nursing homes have hospice.
Your mom will have medical and emotional support regardless of where she receives hospice.
My aunt is on hospice now in her home. My cousin is her caregiver. They provide supplies, medication for comfort and an aide to bathe her.
Another aunt and uncle were in a hospice facility. The care was excellent.
My MIL was in a hospital type setting. In these type settings you are free to visit and be with mom while others tend to her.
It really depends on your mom’s finances and insurance and how much help you need. If you start with home and that isn’t enough you can always move.
The places you call can advise you on next steps and help you make a decision.
Come here often. You will find support here.

Hugs for you and mom.

Here is a link that lists several in your area.
https://everloved.com/hospices/TX/onalaska/
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Tellie4 Jan 2020
Thank you so much. You have really helped me. I’m so sad right now with all that has been happening. I have a great support backing from my husband, sister and adult children but I still feel so alone. I’m afraid that is what led to my sister’s demise. I’ll just take it one day at a time. Woo wee this is tough.
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Here is an article someone just sent me on hospice that pretty much supports what Alva said.

https://www.npr.org/sections/health-shots/2020/01/21/789958067/patients-want-to-die-at-home-but-home-hospice-care-can-be-tough-on-families?fbclid=IwAR30FCx2bQwUibBW5PeQxTsXRFRJkb1SfZYJKvMclyE5dZCyre3RIQqKArY
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I'm so sorry for all the loss in your life right now. My dad was given 3 months to live after a brain tumor had grown, so we called in hospice to come to his ALF for comfort care. He lasted only 19 days, but during that time, he had no pain, agitation, anxiety or fear. I was the one who was scared and worried, frankly. But hospice was wonderful....the nurses, the chaplain, the CNAs , everyone. In fact, the chaplain married my son and daughter in law in a ceremony in dad's room. He was comatose for 2 days prior to the wedding. As soon as the ceremony began, dad opened his eyes and smiled. He told us All he loved us and congratulated the bride and his first born grandchild. He stayed awake for the entire ceremony, then closed his eyes again afterward. He passed away the following day at 2am.

Sending you a prayer for a positive experience with a difficult and emotional situation
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