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My 76 year old mother had lived independently with success until March. She developed pneumonia and was diagnosed with it in early June. She was fatigued and began to slowly withdrawl. In early July, she fractured her femur which resulted in a hospital stay. When she entered the hospital, her cognitive ability changed very quickly. She was confused about everything: where she was, why she was there, and who I was. An additional dignosis in the hospital revealed stage 4 lung cancer which had spread to the brain, where they found a lesion on a scan. There was also speculation it had spread to the bone, which was why the fracture occured. I knew her health was declining but this was all a shock to me and my sisters. It was advised that she enter a rehab to gain some sort of independence, even if it was to transfer to a chair or use the bathroom. She has been there almost three weeks and her cognition has decreased dramatically. The oncologist perscribed a steroid to help reduce the swelling of the brain lesion and increase cognition. She is confused, cannot hold a full conversation with me without being off topic and at times sees things that are not there. Sometimes these things frighten her with intensity. I am able to do window visits at the facility and go twice a day to talk to her on the phone through the window. She has also lost 15 pounds since being admitted into the hospital in July and eats about 25-30% of each meal. Prior to hospitilization, I saw my mom every day for several hours. We would share dinner together and talk about the day. She is my best friend and I am heartbroken at this sudden change of lifestyle for her and myself. It has been heartbreaking for me. The plan for her after rehab is to come back to her home for pallative care. The pallative nurse advised me she will need 24 hour care. I have a sister who can assist me with care. I don't know what to expect and am fearful of failing in some way. Two years ago, my father passed away from Alzheimers at home in hospice, and two months after that my sister passed away from gliblastoma. My mom was the primary care giver for both in her home. My sisters and I assisted. The whole experience was honestly traumatizing for my family. I am doing my best to be prepared, accept the decisions I have made regarding my mom's care knowing I am making them with the best intentions for her, and trying to take time for self care. The onset of the confusion has been devastating for me because my mom and I have always been such a part of each others lives. Sharing laughs, asking for advice, watching new shows and getting gardening tips are what I miss most right now. I don't want my mom to experience any prolonged suffering and just want her to be comfortable. She has cared for others her entire life and is a stage 4 lymphoma survivor. Thank you for allowing me to express my feelings.

Nothing can prepare us for these times. There truly isn’t a frame of reference in this situation.

I am truly sorry for your loss of your mom. No doubt that she was a very special mom.

You will always miss her but now she lives in your heart just as she did while she was with you. I know that you cherish every sweet memory that you have of her.
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Reply to NeedHelpWithMom
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seekingsupport: I am so sorry for the loss of your mother. I send deepest condolences to you. Virtual hugs coming your way. May the power of God ease your grief.
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Reply to Llamalover47
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I am so sorry for your loss.

May God grant you grieving mercies and strength during this difficult time.

Your mom was indeed blessed to have her family around her in her last days. Well done bringing her home.

Great big warm hug!
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Reply to Isthisrealyreal
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seekingsupport, I am so sorry for the loss of your dear mother. Wonderful you were able to bring your mother home before she passed and such a blessing that family were all present . Sending you a special prayer that God will give you strength and peace during this difficult time in your life. Hugs to you.
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Reply to earlybird
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Thank you everyone for your insight, personal stories, positive energy and love. The last 7 weeks have seemed like a lifetime and I keep hoping I'll wake up from it. My mother passed away last Monday, August 17. She had a steady decline in rehab, and I consulted with hospice and she came home on Saturday and passed on Monday. Initially the rehab had set a Tuesday discharge date but I pushed it up to Saturday, knowing I wanted her to be in her home with her daughters. Unfortunately she was not alert, eyes closed and had difficulty breathing. We did the best we could to make her comfortable, which I know in my heart was so much more than the rehab would be able to do. We were able to hold her hand, talk to her, stroke her hair and tell her how much we loved her. Something we could not do in the rehab. We were only able to helplessly watch her slip away through a window, which is a pain I will never forget. I am grieving deeply, as I expected and began grief counceling. I know everything turned out how it was meant to be and how God intended. I am grateful she did not have weeks or months of intense suffering and that in the big picture her end of life experience was brief, however intense it was for her and my sisters. I wish I would have been advised sooner and in a more forward manner from the staff at the nursing home that hospice should be considered. Having no experience in deciding when to transition into hospice, I relied on the nursing home staff for more forward guidance. In hindsight, you don't know what you don't know. Now I know. I am working on my journey to healing, taking my time. I didnt allow time for grieving the death of my father and sister two years ago as I was focused on helping fill that void in my mom's life. This is why I believe I am grieving more than one loss, but all three. Thank you again for allowing me to express myself. Your words and shared experiences have comforted me.
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Reply to seekingsupport1
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I am so very sorry to hear that your mother's health has declined - with so many back-to-back health issues, it is definitely hard to come to terms with it. May God grant you and your mother measures of comfort, even so.
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Reply to Llamalover47
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While she has some diagnosed medical issues, it would not hurt to ask them to check her for a urinary infection. UTI's are so very common in the hospital and rehab setting, yet for some reason the family has to insist on testing to test for it. UTI will cause major confusion issues.
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Reply to my2cents
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You think you don’t have the courage to handle this, but your narrative shows that you do.

it is too much to take, but you will be there for her like she taught you, by example. Take strength in the fact that many of us have done this, And you will get through and you will be okay. Gain strength knowing that many people would never do this — and you are one of the special, very rare ones who would.

Hire help so you can get rest when you are weary. Find what calms her (not morphine) but music, hand massage, calming videos.

You may not be able to have dinner like you used to, but these moments will be treasured also.

if you need encouragement, let me know - I’ll write you personal messages. I’ve been there and am so glad I had the privilege to love my parents and show them that love unconditionally.

Watch the Wizard if Oz. They all had those qualities they were seeking, they just didn’t know they could do it.

You’ve got this! You will be grateful someday that you did this your way.
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Reply to ACaringDaughter
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Although medically she may not get better - mentally there is a chance once home she may regain a bit of herself. Seniors often do not do well in a hospital (and rehab looks just like a hospital room). The meds they give in a hospital to keep them comfortable can have just the opposite effect - delusions, paranoia, etc. Maybe seeing familiar surroundings will at least give her some peace. Dont try to do 24/7 yourself - get someone for "night shift" if you can.
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Reply to desert192
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Please talk to her doctor about prognosis and expected declines with her cancer. Her doctor can prescribe hospice for her since it appears her condition is terminal. With hospice, she can get home health and nursing help for the duration of her illness. Hospice can be done at home or in a facility. If visits with your mom are important, you may wish to have hospice at home. Hospice staff can talk with you about the usual types of support they provide and how that looks in a home setting. Having additional, caring, knowledgeable people with you to help care for your mom should help give you more time for self care.

Reading about all the losses and trauma in your life, I would like to suggest that you attend a grief support group like GriefShare. You can talk to others who have also lost loved ones as well as those who have already walked the path of grief to a place of peace.
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Reply to Taarna
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Seekingsupport, great big warm hug 🤗🤗🤗!

I found out that my sister was sick unto death because I happened to walk in the ER as the doctor was telling her that she is consumed with cancer. So the suddenness for you is very familiar and the pain it causes sends me back 3 years.

If you are going to bring her home, I suggest that you do it soon. Once it has metastasized to the brain things are very different and the person that you knew is buried under this vile disease, you probably don't have much time. So interview hospice providers and get the durable medical equipment that she will need delivered.

My sister could no longer move, her bones were eaten up and would just break, so she was transported home in an ambulance with 4 paramedics to help her. She was in so much pain they couldn't roll her on the gurney so these wonderful people carried her.

May God grant her and you peace and strength during this difficult time.

Great big warm hug!🤗🤗🤗
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Reply to Isthisrealyreal
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First of all, I am so sorry about your situation. There's nothing harder...nothing. I watched my mom go from remission one week to Stage IV cancer two weeks later. I still can't understand what transpired. I can't tell you what to do but what helped for me is to talk to someone you trust. Get your feeling out and don't keep them bottled up. Be there for your mom and family as much as you can. In my situation no one in my family would stay with my mom while she was in hospice (in the hospital) for their own reasons which I respect. I chose to stay with her each night and day. I would not leave her side but to go home, shower and come right back. Whatever YOU decide is best for you and your mom is all that matters. Please don't be afraid to ask the physicians for more medication to make your mom comfortable when the time nears. Try not to be scared although it's the scariest thing in the world. I'm here if you need to talk...any time. May the Lord bless you, your mom and your whole family. I'm thinking of you.
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Reply to Billiegoat
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What you are going through is so difficult. You and your sister (and mother) are heros! Palliative care is like hospice, where the goal is to keep her comfortable. Hospice might be able to help you and her if they are allowed to visit. They can show you techniques of how to handle things if she is bed-ridden, for example. And they can recommend equipment (such as a hospital bed that can lift up and down). At the very least, they can offer advice. You'll have to be strong. All the best to you.
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Reply to NYCdaughter
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Oh my! Yes, Sundowning probably caused the sudden cognitive decline, but your mom has so many other things that could be contributing factors. I’m so sorry you’re experiencing this - it is very scary that they decline within hours of being admitted. But for the other conditions, I would think getting her back to her normal routine would help tremendously. Prayers for your mom and your family.
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Reply to Maggiemay1971
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Oh my Lord you have had so much happening all at once. I am so sorry about your mom's sudden rapid health decline. I too have had a heavy load to carry for two years now. Please try to get some good quality sleep and care for yourself. My dad had a difficult time in hospital stays and rehab due to "sundowning". Once he went to his home with in home care and then eventually hospice his head cleared up quite a bit. You may still be able to have some quality time with your mom. You and your sister need extra help. Wishing you the best as you walk your mom home.
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Reply to InFamilyService
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I’m so sorry you’re experiencing this. I also went suddenly from having a mother I was extremely close to, to having one that couldn’t do anything or relate to me at all. It was impossibly hard for us both to make that switch, for me to watch her decline, for her to not to be able to change it. The only advice I have is to get help, accept any offers of volunteer help like meals or household help, and just take time to hold your mother’s hand. Through it all, she will still know your love
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Reply to Daughterof1930
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I am so sorry that this has happened. Your poor mum and you too. The only consolation in all this is that you have had a wonderful relationship with your mum and she has been such a support and been so valued by her family over the years.
Many people (on this forum) do not have that but still go into mourning at this stage - way before the person actually dies. You will go through a roller coaster of emotions just now. I lost my mum in May but it was after a couple of years of dreadful personality changes; which were not recognised or diagnosed until quite late. I think it helps to get the clarity on what is going on - so you can prepare yourself. I also think it helps if such a serious illness is short lived and the person does not suffer for too long.
Good luck with it all and hang onto the good memories with your mum.
xx
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Reply to wiseowl
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Thank you everyone for your insight and feedback. I know eventually we will end up in a hospice setting. Mom's oncologist suggested going into pallative support at home. My confusion lies in who and when the hospice placement can take place. To my understanding, hospice placement takes place when the patient's doctor determines life expectancy is 6 months or less. We had hospice treatment for my dad and sister at home and I know the many benefits of the services. They were very supportive. Limited finances will not allow a placement in a facility, since it is private pay. I can also work with a local caregiver service to get extra help. I am at terms with the diagnosis logically, however still overwhelmed with grief and sadness. I pray throughout the day for strength to face whatever I need to face. Thank you again for giving me this outlet.
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Reply to seekingsupport1
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InFamilyService Aug 13, 2020
“For God is the one who for the sake of his good pleasure energizes you, giving you both the desire and the power to act.” - Philippians 2:13
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I too suggest a good hospice. Stage 4 means no cure so I do not recommend any treatment. Amost 2 years ago my 63 year old brother also had cancer that went to his brain. After rehab which was useless because he always had an excuse to refuse, he only lasted 3 weeks more. He simply slept more then stopped eating and drinking. And yes he needed morphine for pain. His care became minimal with just someone watching him. He could not be turned for the pain would wake him. With hospice there is a social worker to assist family to come to terms. Expect that there is no way out and she will decline. Just try to be with her on good terms.
Are you able to rally some extra help? It is acceptable that if visitors come, to step away for a couple of hours. You may notice that if she sleeps a lot, you can leave the home for a while, especially if she recently received some pain meds.
When my brother was in hospice, he slept well through the night so that any caregiver could quietly sleep in the room or sleep in another room. Almost to the end, on advice of hospice, we could get him to break through the medication affects by stimulating him to talk or to take fluids if he wanted them.
You are going to watch this decline, please utilize the hospice visitors as much as you can
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Reply to MACinCT
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What terrible trauma you have undergone with one blow following another in such quick succession, and from all you say you have seen heartbreak enough.
I know the doctor will have explained to you what the brain swelling and the mets to the brain indicates, and see that you already have palliative care in place. I want to ask if you would consider hospice care. It would help you a lot, and there is honestly no upside in Mom having to suffer without adequate sedation and help, and this could possibly give you more help as well.
This is a very difficult undertaking. Are you certain that you wish to take this on in your home, or would you consider SNF setting, even Nursing Home.
There is so much for you to consider now and I hope your support system is very good. Again, this is such a lot to be set on the family plate now. I am so sorry.
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Reply to AlvaDeer
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Wow, what a traumatic experience to be going through for you. Just reading your story has me choked up, so I can't even imagine how dreadful and frightened you must feel right now.

My father died of a brain tumor and was in Assisted Living with my mother at the time, so I was able to sit with him every day and even lie in the bed with him and say the things I wanted to say before he passed. Had this stupid virus been thrust upon us at that time, the opportunity would have been stripped away from me, and I'm grateful it wasn't.

Do you think you and your mom might be better off if she were to go into a hospice care facility after she's released from rehab? I know that many hospice residents ARE allowed visitors, so maybe you'd be able to go there every day to sit with her but still have her needs tended to by a staff of 24/7 care givers. Just something to think about. The thought of having her come to live with you after her release from rehab must feel overwhelming...........I know it would for me.

My 93.5 y/o mother lives in the Memory Care section of the ALF nowadays and I feel your pain with witnessing the confusion; it's very difficult. A year ago last May she was hospitalized with pneumonia and suffered hospital delirium; she was seeing mice running on the floor and all sorts of awful things. A CT scan revealed that she'd had a stroke sometime earlier as well, which was contributing to her dementia. These days, she's up and down. Some days she's coherent but other days she's in another world. When I speak to her on the phone and she's incoherent, it's really terrible. I know that I would not be able to care for her in my home because I just don't have it in me to be a 24/7 care giver to a person with SO many health and psych issues.

Ask yourself honestly if you think you can really do this, and go from there. Wishing you the best of luck in such a difficult situation and sending you a prayer for peace with whatever decision you make. And a prayer that your dear mom suffers as little pain as possible during her remaining time on earth.
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