Mild dementia, metastatic cancer, helping Mum. What can we expect?

My husband has Alzheimer’s diagnosed 5/4/18. He has Stage 4 Prostate Cancer as well. The dynamics are certainly different with a spouse. As I care for my father as well, the problems are different with my spouse as it affects my social life and our finances whereas my Dad’s problems would not. Currently, Dad is very healthy anyway, though he is 93. My husband though is lazy as well as personality disordered; once diagnosed with bipolar but recently this has progressed to very histrionic behavior. The thought of all of our savings and then our home going to a nursing home kills me everyday. I search and research daily how long is survival with Stage 4 PC mets to lymph nodes, how long can one live with Alzheimer’s, what are the chances his poor heart health will take him; just had hiatal hernia surgery against the oncologist’s and neurolgist’s suggestions and survived that! I cannot quit work; I am too young to retire and cannot afford it. He is 72. I am 57. I am just beside myself with worry about finances, and his very embarrassing behavior socially. I feel like a big part of my life is in limbo, and I’m frustrated, because I am caring for a man who never took care of or valued me, just took advantage of me. I handle everything. There is not one thing I need to learn to do after he is gone. I already do everything. And yes, I am somewhat bitter and very tired of it.

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

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

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..

Usually the hospital will not discharge the patient to the home without qualified care present.

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.

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.

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.

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.

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?

Perhaps his children who live far away would be able to pay for services in addition to what Palliative is providing.

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.

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.

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.