Mother in law joined Hospice
I have been a lurker since my mother in law was DX stage IV about 7 months ago, and found so much comfort from the ladies on this board. We have come to the end of a very diffecult journey. My mother-in-law had stoppeed all treatment last Aug and this last PET/CT showed more then 20 area's on mets from Bones,liver,lymph,lungs and even abdomen.I have prayed for a peace and am still waiting for it..lol I live in a contstent state of anxiety as I have been a nurse for over 16 years and know what the road ahead is going to be... She has multiple bone mets from 80% of her spine to ribs to sternum and pelvis. I have worked with hospice in the past and remember end stage bone cancer.. I am holding back my fear and anxiety.... I am seeking support of other who are caring for a loved one during the hospice stage of this journey ....I know that God has blessed me with a wonderful mother-in-law and will try to respect her wishes to stay at home with assistence from hospice and myself until the end.
Comments
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Vicki, I am not currently a caregiver of a loved one at end of life, but I know a fair amount about the experience. I hope you have others in your family or circle of support who can assist you with providing care and by giving you occasional respite from caregiving. Make sure that you request a hospice volunteer early in the process so that you and your mother-in-law will learn to trust that person and feel comfortable relying on him or her as needed. Do all that you can to care well for yourself, which will allow you to better care for your mother-in-law as well. Make sure that you have someone you can talk to about any and everything, and continue to check in here for support. Communicate clearly and honestly with your loved one, and don't hesitate to discuss her concerns, fears, hopes with her. Help her to identify any short-term goals she might have; people often erroneously assume that going into hospice means just giving up and dying. Hospice is designed to help people experience the peace and comfort they need in order to have the best quality of life possible as long as they live and then to experience death with dignity. And I know this may sound like a tired cliche, but try to focus on one day at a time unless there are pressing needs regarding the future to resolve (eg legal issues, funeral plans, etc.). So many times we project ourselves into the future, and we don't fully live in the present, thus depriving us of those moments we will never have again. Your mother-in-law is fortunate to have someone like you willing to respect her wishes and to be there for her.
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I believe the mission of hospice is to make the patient as comfortable and pain free as possible. My DA had hospice in during the last two weeks of her life at home, and they were just wonderful. They cared for her so well and she was never in pain except once when the family wanted her to be alert for visitors. The hospice nurses were not happy about that and made sure the family understood that it was too much for the patient to undergo pain like that just to receive visitors. It's better to say your good byes to friends before hospice comes in because at that time, it should be peaceful and quiet and a time just for family members.
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Hi Vicki
I've just been through this with my Mom, we lost her October 1. We are in Canada and we were lucky enough to have palliative/hospice care for her at her home until September 11 when we had to hospitalize her and then, 9 days later, moved her over to a hospice facility not far from my house.
She was diagnosed last January with multiple bone mets very similar to your mom in law. This was my mum's 4th bout with BC - she won the first three. The bone mets were absolutely the most painful for her and we very nearly lost her in January but were finally able to get her pain under control. The beast eventually metastasized to her liver and brain. We were blessed to get 9 good months with her last year because of Fentanyl patches for her pain. She was virtually pain free most of the year and, really, until she did move to hospice in her final days. The pain got cumbersome for her in her abdomen at that point, but the hospice care people are experts at keeping people comfortable.
I won't sugar coat it for you - it's a very bumpy ride. Hospice workers though are angels on earth and we were so happy they took the lead in Mum's final dance...they definitely made her passing more peaceful, most of all for Mum but also for us. Being a caregiver is excruciating work, and there is really no reward at the end of it. However, I really do feel blessed that I got that "extra" time with Mum thanks to our palliative pain care team.
Hugs and love to you, try to remember to notice and cherish the little victories along the way if you can.
Margi
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that should read "beast eventually metastasized to her liver and brain" not "best". fingers going faster than brain, sorry.
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Hi vicki how are things going? I didnt see your post before and just wanted to say i hoped thongs are going ok. I was involved in using hospice service in usa for my sister very recently. She was determined to stay at home, she loved her own bed! We developed some strategies which meant that she could be comfortable and still feel like part of life ( i guess is one way of describing it). Hospice in the US is different to here and there were some situations that i was not expecting, especially when Cyn began to decline. Please feel free to send me pm if you would like to talk. With all my heart i wish you strength and peace x
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Thanks for all the support. Hospice is going better then expected. They have also been involving my two children a 7yr old girl and 9 yr old boy, they offered coloring books for the younger one and age appropriate books for my 9yr old so that they may process this at their own level of understanding. I wake everyday and try to count my blessing so that I am not smothered by all worries.My mother-in-law is doing amazingly well for the extensive mets she has to the spine and ribs and hips, she is actually only complaining of very mild pain. I guess that my fear comes from years of nursing and the couple of years I worked nursing home/hospice. I have never been thru the whole experience just the end stage.. I continue to find encouragement and strength from all the women on these boards and realize that we all have such greatness with-in ourselves we can do anything.
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Glad to know that your mother in law is doing well and that hospice care is going better than expected. Sometimes the first step can be so unnerving that the next step seems a tremendous relief, especially when the hospice team provides so much support to help you take it. I will be thinking of you and checking in to see how your caregiving life is going. I hope your mother in law has good pain control throughout the end of her life, and I hope you get all the support you need to care for her along the way.
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An update: My mother- in-law started out in home hospice which worked very well.. I recommend asking any nurse/medical friends out there for recommendations, as I actually had a friend whom worked with this hospice company and she was correct when she assured me that this company was very patient centered and really the best in the area! My MIL was in home until the brain mets caused her to be unsafe even with someone there watching as she began leaving the house and having periods of mania that could no longer be redirected. I was able to place her in-patient last weekend. I have such guilt for this action but I know that it was the best possible place for her.. It has only been four days and already I feel the loss of her.. she no longer is alert and I miss my daily conversations and talking about what we were going to plan for our weekend meals.. I hate that cancer has taken away my children's grandma and my mother in law, my friend.......
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Vicki, I am so sorry to hear that your MIL's brain mets caused such issues of safety and mood disturbance. You sound so disappointed that she was not able to remain at home through the end of her life; however, you also sound as if you provided wonderful care and companionship to her while she was at home. AND you made a decision that was very compassionate and respectful of her needs at this point in her life by arranging in patient care. It is so challenging to face end stage disease, manage caregiving, prepare to lose a loved one, then have your preferred plan for care have to change on top of all that. I hope she continues to receive the best of care and that she is close enough that you can visit regularly, and I hope your family, friends and the hospice team provide you with the support you need. Be good to yourself!
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