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Life has a way of derailing one.


Step-Dad has some sort of dementia, mild, was driving up until a few weeks ago, a bit forgetful and sleepy. Oct 22, he went to the hospital after stroke like symptoms, 8 days of testing and the doctors determine he has metastasized cancer throughout his abdomen.


He is still in the hospital and we are waiting for Palliative Care to be organized in the home. In Canada Palliative Care is like Hospice in the US. We have not yet been given an estimated life expectancy yet. Weeks, months who knows?


So many changes so fast. With the dementia progressing slowly there was time to adapt as each change came along and there had been very few. Now Mum who is not a homebody, is looking at having her life turned upside down. Luckily she is social and welcomes having caregivers in her home. But she will need to have time away from the house, time walking her dog, time in the garden, time for her regular social activities.


The dining room will have to be converted into a bedroom for him, as the bedrooms are all upstairs. I will have my son help with the heavy lifting. I told Mum I would get boxes to pack up the China cabinet (it is a small room and the space will be needed) she went into a bit of a panic.


I know many of you have been in the trenches for years, but this is all new to our family. How does Mum manage when the caregivers are not there (we have been told 3 times a day)? He is at least 130 pounds heavier than Mum.


I am nearby, but draw the line at personal care. I can go over and work on my homework while Mum gets a break, but I will not change him. I know we can arrange for Hospice to have a volunteer come sit with him, but that is for companionship not care giving, (Again the differences between CA and US.) Mum was a Hospice Volunteer for several years.


I am a full time mature university student in a city 30 miles from home, so my availability is limited. I have a part time job that is somewhat on hold and have given the groups I belong to notice that my availability will be limited.


His kids live far away. My brother and his wife (a doctor thank goodness) are coming tomorrow for a short visit.


I guess I do not have a question, just needed a place to tell others who know what is can be like what we are facing. Thank you

Dear Tothill, you and your family have my sympathy. It sounds as though your father is towards the end of his life, and his body is not wanting food. Perhaps your mother is not helping him by what she does, though that is very difficult to accept. If you could suggest that she does the trip only once a day, it might help him and her too. Best wishes
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Reply to MargaretMcKen
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It's two weeks since you first posted, and that's a long time with the issues you had. I hope that everyone is coping as well as can be expected. Love, Margaret
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Tothill Nov 12, 2018
Thank you Margaret for following up. Tomorrow I take Mum to an intake appointment with Hospice (not the same as Hospice in the USA), they offer support to the dying and their family.

He is starting week three in the hospital.

Mum has been speaking with friends who have gone through similar situations. The has been strongly advised by those who have had Palliative Care at home to not have him come home. They know Mum and her personality and also how tough it can be.

Mum broke down at the hospital on Sat and spoke with the Doctor saying she did not know how she would manage. He told her that she would not be 'forced' to bring him home. That gave her a bit of relief.

A biopsy was done last week and hopefully the results will be in by the end of this week. The hope is the results will give an idea of the original cancer and what progression to expect.

Each day he is slowing down a bit more. He recovered from the original stroke like symptoms, got his speech back and ability to get to the toilet. He does not eat unless Mum feeds him. She has taken to bringing him food from home, like porridge for his breakfast. Unfortunately the two trips a day are taking their toll on Mum.

I hope to get her away from the Hospital for a whole day this coming week.
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Good idea u get some thing to help her calm.down ..call hospice.they help with pain ..sickness..anziety medacations great for patients going threw life changes..
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Reply to Charlia
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Usually the hospital will not discharge the patient to the home without qualified care present.
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Reply to Llamalover47
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Thank you to all who have replied with suggestions and support. I will try to reply to each of you here.

Mum is in great health, could pass for 60 (they are both 84). She loves her home and there is no reason at this time for her to leave it. Mum knows what facilities are available in the community and will move when she needs help or care. She does not need assisted living, nor would she move into a facility with SD, that has varying levels of care. She has talked about selling the house and moving when it is too much for her to manage, but she is not there yet.

SD has an Advanced Directive and I spoke with my sil (the doctor) yesterday after she has a look at his chart. They are doing yet another test tomorrow to try to determine what type of cancer it is, so they can give Mum some idea of a timeline. Sil told me he has blood clots in his lungs and is on iv blood thinners for that, plus a mass the size of a large orange in/on his liver. Plus additional nodules throughout his belly. He does not want chemo etc, 'No Heroics' is his choice. Mum does not think he is in pain, but he tires very quickly, sleeping most the time.

His kids do not have any money to help out. Nor do I.

SW, I am not young, I went back to school at 49 to get a degree. I have two semesters after this one and I cannot afford to delay my graduation. There is only one online course I can take that could go towards my degree. I need to find full employment before my savings run out. I am single, so only have my own funds to depend upon. Luckily my studies are helping with some of the stuff Mum is dealing with. I am doing a retirement planning course as I work towards a finance degree.

I am booking an appointment with a local Hospice Agency (not the same as Hospice in the US), which provides support to caregivers and the dying. I will book one for Mum too, I had hoped for us to get in together, but that may not work.

Mum's sister is arriving today for three days. Friends have reached out to Mum and she is slowly realizing it is OK to accept help. Mum usually would be the one offering help, it feels strange to her to accept it.

Through all this she is acting as POA for family friends. I am worried as are they that it all will be too much for Mum to handle.
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MelissaPA2AZ Nov 5, 2018
You are amazing! And it seems you may have gotten that from your mum. It seems you have lined up everything available in the way of support for now. I encourage you to continue maintaining your healthy boundaries. No one should be expected to completely sacrifice their own future, or most especially their own health for caretaking. If you don’t keep your own reserves supplied, you’ll have nothing to give anyone else. As you continue down this road continue to come here as a place to vent and receive the support you may need. Bless you.
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You situation is all too familiar.. sound just like what we went through. My Dad had cancer and even in declining health was very concerned about what would happen to Mom. Is your Mother safe living alone?.. I'm gonna be frank.. your Dad is gonna pass you need to concentrate on what will happen to her. We made the difficult decision to move them to assisted living before he passed. It WASN'T easy.. it was a very turbulent time Im not sugar coating it... it was HARD. But my Mom had a chance to make some friends for support and get used to her new surroundings with my Dad by her side. After he passed she had lots of friends to comfort her there 24 hours a day. She is thriving now. If your Mom can still drive, pay bills, grocery shop cook clean.. then maybe she will be ok my Mom already needed help with those things. Be careful as you move forward if you choose an assisted living they are NOT all equal and you get what you pay for. If you can't find one you can afford that is good, then do your best at home. I can only speak about my parents everyone is different but you are up for some hard days ahead. I feel for you at such a young age to be dealing with this.
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Reply to snidewoman
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I wonder if there are Area Agencies on Aging in Canada? They may be able to help you think through additional options. Depending on mother and FIL’s financial situation, they may qualify for additional services (e.g. meals on wheels here in US) such that if there are multiple people come in throughout the day/week, they can help just keeping an eye on things and let you know if the arrangements are not working. This could help you build the case for more residential treatment sooner...Wishing you strength and wisdom for the road ahead.
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Reply to MelissaPA2AZ
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We need to get the word out to doctors who treat dementia, to do CAT scans for tumors. MY dad suffered w "dementia" for 3? 4? 5? Years before he died of tumors and lesions all over his body. Our family physician (who I certainly do not blame, he made the best diagnosis possible) did not do a CAT SCAN until he suspected a stroke and they discovered a brain tumor. Did the tumors elsewhere spread to his brain? Or was it the reverse. We will never know. PLEASE, PLEASE, ANYONE with early( or even later? ) dementia, have a CAT SCAN DONE. It could save a life.
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Reply to suzyschilling
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Is he currently in pain? Is there pain medications protocol in place?
Are there any friends/family/neighbors willing to assist your mom?
How is your mom’s Health?
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Reply to wi57twin
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Perhaps his children who live far away would be able to pay for services in addition to what Palliative is providing.
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Reply to ltushla
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You've just received a big shock so take a big breath and sit back for a moment.

I've had to deal with things like this in my life. I took care of MIL while working full time and stayed at her house, did school on line, and drove back and forth to my own house.
I found that I could sponge bath a woman and help her with her bed side potty.

It isn't as awful as all that. You may find that you can help.
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Reply to Val3rie
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Your sister in law can give you better comments than me, but for what it is worth...If the cancer has metastasised extensively through your step father’s abdomen, the original cancer is well established somewhere else and is still progressing. My mother’s was a breast cancer that also metastasised through the abdomen, after years in remission. Unfortunately her oncologist got the OK to operate and remove some but not all of the abdomen cancer, which caused a lot of pain, massive bills and care issues, and prolonged her life by only a few weeks. While cancer times are always unpredictable, it may be that you are looking at quite a short time here. Death (and birth) are rarely convenient, but your options for coping are different if this won’t go on for long. Perhaps you could take a study break for a semester, for your mother’s sake if not for FIL. If time is short, you may be able to manage the personal care, just like you did for your babies. Don’t write it off as an option before you have more information – some of the other options are just as unpleasant in different ways. I hope that your sister in law can help, and send you best wishes.
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Reply to MargaretMcKen
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I think you need to be in touch with discharge and social services at the hospital to tell them that there is no one in the home capable of caring for dad. This will be an "unsafe discharge". He needs to be in a nursing home setting.
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Reply to BarbBrooklyn
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MACinCT Nov 5, 2018
I believe there is a very long wait in Canada for nursing home care. Tothill, keep seeking help through Palliative for how to make do with home care. We too in the US sometimes have to hire caregivers.
Please keep us informed
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