Aging Parent Support Thread

[bean29]

Sorry Bonny, praying you find a solution.

[mmhmm]

Bonny, I'm so sorry. This has to be horrible for you. It's foolish of her to refuse home help as that would probably be a workable solution for awhile. Perhaps you can get social services, or protective services for the elderly involved to intercede on his behalf. I don't know what's available where you live. There's certainly nothing good to be found in what you're all undergoing now.

[Bonny]

Dec 22, 2018 11:50:54 GMT -5 NomoreDramaQ1015 said:

So sorry Bonny. Does the hospital he gets treated at have a social service office? They are the ones along with the doctor that helped navigate getting my grandfather into hospice.

After talking with the oncologist Thursday afternoon and letting her know about the melt-down and home situation she said she would have her social worker help with locating a place for him. No call on Friday. Hope s/he calls Monday. I do have a house full of guests starting Sunday afternoon, leaving Thursday. I'll be happy for the distraction.

[Bonny]

Dec 22, 2018 12:10:03 GMT -5 mmhmm said:

Bonny, I'm so sorry. This has to be horrible for you. It's foolish of her to refuse home help as that would probably be a workable solution for awhile. Perhaps you can get social services, or protective services for the elderly involved to intercede on his behalf. I don't know what's available where you live. There's certainly nothing good to be found in what you're all undergoing now.

I agree with you that she is being foolish. Having help would free her up to do the gardening she loves (and would be good for her too) versus being consumed with dealing with him.

If she misses his appts then yes, we will get protective services involved.

[TheOtherMe]

I'm sorry she doesn't see the value of what palliative care in home can do for her.  Not only did a nurse visit mom 3 times a week, a CNA type person also came three times a week to bathe mom and do other personal care things.  

Mom had said no more doctors, so we didn't have to deal with that.

When my aunt fell at home, the doctor at the hospital said she could not return home.  The social workers at the hospital had a nursing home for a straight Medicaid patient ready by the time she was ready to be released.

I wish you the best with this difficult journey.  It isn't easy and I don't quite understand why she thinks you and your brother are an intrusion.  You are trying to help.

I get that she is stressed, but ......

[Bonny]

And I probably should have started off with his prognosis.

Very, very aggressive Squamish cell carcinoma which started around his tear duct. Within a month he apparently went from looking pretty good to having about a plum-sized tumor on the outside of his face with an equal sized tumor on the inside which is pressing up against his auditory system and now his jaw. For him to hear you must put your mouth about two inches from that ear and shout. He has the TV on about 100 dbs. He has a constant headache probably from the pressure of the tumor. He can't fully open his mouth therefore eating has become more difficult.

The treatment proposed is a type of palliative immunotherapy which the doctor hopes will help shrink the tumor and relieve some of the pressure. She says it has about a 40% success rate and virtually no side effects. It is not a cure. He is going to die from the cancer. He is out of options as surgery is no longer possible and he has had a lifetime dose of radiation.

We also mentioned assisted suicide. This is a mean cancer which takes a while to kill you. The doctor told me that unlike many other cancers this one does not quickly metastasize to other organs and kill you quickly. She estimates about one year with no treatment. Likely complications are strokes and heart failure.

I feel so sorry for him. What a way to go.  

[finnime]

I'm so sorry, Bonny.

[taz157]

I’m so sorry Bonny. ((((Hugs))))

[TheOtherMe]

Bonny   Hugs   If he lives where assisted suicide is legal, is that something he would consider.  

As I said, mom had reached a point where she was finished with doctors and treatments.  For the last 6 months of her life, she only received care from hospice and the pain meds they provided.  Nothing else was being treated.

[buystoys]

So, so sorry to hear this Bonny. 

[azucena]

Bonny - that's a lot to deal with.

Just to offer another viewpoint, maybe the gf is preemptively lashing out because she's so overwhelmed.  She may not have the capacity to be his caregiver and she may be subconsciously saving herself from watching him die.  Not an excuse, but I find it easier to have empathy if I can figure out motives. 

[wvugurl26]

So sorry bonny. I hope the social worker can help you find a solution. Cancer is just awful and some are far more evil than others.

[Works4me]

Bonny - definitely talk to the medical social worker. Moving him several hundred miles might not be the best choice. Hospice is a Medicare covered benefit. Also, is your father a Veteran? What type of Kaiser does he have? You really need the help of someone who knows the system in that area.

[Bonny]

Dec 26, 2018 18:13:46 GMT -5 Works4me said:

Bonny - definitely talk to the medical social worker. Moving him several hundred miles might not be the best choice. Hospice is a Medicare covered benefit. Also, is your father a Veteran? What type of Kaiser does he have? You really need the help of someone who knows the system in that area.

Thanks. I agree I need to work with someone who understands the system. It's been a week and I haven't heard from the Kaiser social worker yet so I left a message for his oncologist.

Dad is not a veteran.

Dad is on Kaiser's Medi-Cal program. I'm not sure if you read my earlier post but the one facility who would take Medi-Cal patients had a waiting list about two years long. It's like I thought when I first started this thread. My husband and I will be the ones footing the bill. At least we have the money and he won't be left homeless.

[Works4me]

Dec 27, 2018 18:45:13 GMT -5 Bonny said:

Dec 26, 2018 18:13:46 GMT -5 Works4me said:

Bonny - definitely talk to the medical social worker. Moving him several hundred miles might not be the best choice. Hospice is a Medicare covered benefit. Also, is your father a Veteran? What type of Kaiser does he have? You really need the help of someone who knows the system in that area.

Thanks. I agree I need to work with someone who understands the system. It's been a week and I haven't heard from the Kaiser social worker yet so I left a message for his oncologist.

Dad is not a veteran.

Dad is on Kaiser's Medi-Cal program. I'm not sure if you read my earlier post but the one facility who would take Medi-Cal patients had a waiting list about two years long. It's like I thought when I first started this thread. My husband and I will be the ones footing the bill. At least we have the money and he won't be left homeless.

There is no need for you to foot the bill and in fact there are some significant financial reimbursement risks in doing so.

Hospice is covered by Medicare benefit not Medi-Cal. Therefore it is Medicare that pays not Medi-Cal. He specifically needs a Medicare Hospice bed, not Medi-Cal.

Just FYI, my father was covered by Medicare Hospice from August 2012 through January 2013. I added it all up and over $50,000 was paid for his care during that time for a three bed room. At over $10,000 per month, a Medicare patient the most renumerative a facility can care for, even more than a solid private pay patient. Part of that is because other services like music therapy, etc. But it also pays the facility very well due to the nursing care and other needs. The main issue on their side is paperwork.

Medicare Hospice is a whole other Animal and is not Medi-Cal. The only question is whether or not hid Medicare was capitated by Kaiser and even then there are workarounds.

[Bonny]

Dec 27, 2018 19:41:18 GMT -5 Works4me said:

Dec 27, 2018 18:45:13 GMT -5 Bonny said:

Thanks. I agree I need to work with someone who understands the system. It's been a week and I haven't heard from the Kaiser social worker yet so I left a message for his oncologist.

Dad is not a veteran.

Dad is on Kaiser's Medi-Cal program. I'm not sure if you read my earlier post but the one facility who would take Medi-Cal patients had a waiting list about two years long. It's like I thought when I first started this thread. My husband and I will be the ones footing the bill. At least we have the money and he won't be left homeless.

There is no need for you to foot the bill and in fact there are some significant financial reimbursement risks in doing so.

Hospice is covered by Medicare benefit not Medi-Cal. Therefore it is Medicare that pays not Medi-Cal. He specifically needs a Medicare Hospice bed, not Medi-Cal.

Just FYI, my father was covered by Medicare Hospice from August 2012 through January 2013. I added it all up and over $50,000 was paid for his care during that time for a three bed room. At over $10,000 per month, a Medicare patient the most renumerative a facility can care for, even more than a solid private pay patient. Part of that is because other services like music therapy, etc. But it also pays the facility very well due to the nursing care and other needs. The main issue on their side is paperwork.

Medicare Hospice is a whole other Animal and is not Medi-Cal. The only question is whether or not hid Medicare was capitated by Kaiser and even then there are workarounds.

Thank you,  this is really helpful information.

Because he is on palliative care (immunotherapy) he is not in hospice care...yet even though he is terminal.

I had to look up the term "capitated". Could you explain further and perhaps give me an example of how it works?

[TheOtherMe]

My mother's in home hospice care was covered by Medicare.

[Lizard Queen]

My mother's hospice was ultimately denied by medicare...the hospice that started 3 months before she died.  They didn't do much anyway.  The expensive nursing home was still private pay.  They  just came in a few times a week to give her a little extra attention.

[Bonny]

The Kaiser social worker called me on Friday. She gave me some resources and encouraged me to see if he can qualify for a skilled nursing unit under custodial care which Medi-Cal will pay for. He won't like it but I think he might qualify under the having to toilet, bath and dress. The big problem is that he is really between services. He can't qualify for Hospice because of the Immunotherapy and > than 6 month terminal diagnosis.

And we only have about two months before we know if the Immunotherapy is going to help or not.

[TheOtherMe]

One of mom's biggest fears as she was in the 5th month of hospice care was that hospice would kick her out.There was no medical explanation was to why she was still alive and they assured her they were not going to kick her out of the program if she lived past the 6th month.  

She worried so much about that.  Her nurse told her that there was no expiration tag on her big toe.  

Mom did pass during the 5th month of hospice care.   They didn't expect her to live a week when she originally went in to hospice care.

[empress of self-improvement]

Dec 27, 2018 19:52:32 GMT -5 TheOtherMe said:

My mother's in home hospice care was covered by Medicare.

Same here. As was the facility stay when she had a stroke, we think, went in and passed away the next day. If it wasn't, have no idea because never heard otherwise.

[TheOtherMe]

I used to be a representative payee.  Hospice care was covered by Medicare for my clients' when it came time for that kind of care.  They were all on Medicaid for the facility care.  

The hospice here is a non-profit and we as a family donated to it and had all the memorials sent to them.  

[Bonny]

Update:

Placement officer is out of the office until Monday the 7th.

On Sunday morning I called and left a message for g/f that I could come down and take him to his appointments on the 11th and 14th and that I wouldn't be staying at the house. I would stay at either my cabin or a motel in the area. I didn't hear back from her until 24 hours later via e-mail stating she would be taking him to his appointments.

I sent a return email asking how he was doing and how she was doing and that I would be giving her weekly updates with my progress. I also requested that she keep me posted on his situation. If he's doing worse then I would need to make other arrangements.

As of today I still haven't received a response. From past experience she does not check her e-mail that often. While I interpret the e-mail response to my telephone call as a way of avoiding talking to me, I'm glad I have it for my record in case things head further south. I will call again Sunday morning with the same message as the e-mail with a follow up e-mail on this week's progress (or lack thereof).

Today my uncle (Dad's brother) called. We had a long talk about what's going on. He's going to try to visit toward the end of January. We'll see if he's able to make any progress.

I need to talk to my brother too in order to bring him up to speed but I'll save that for later today.

[empress of self-improvement]

I'm sorry Bonny. Jeez, I'd want as much help as I could possibly get!!! Never mind try to piss off the family members.

My SIL and niece looked at an assisted living facility for MIL today. They liked it but they both also know that MIL will raise the world's BIGGEST stink about it. I know where her son gets it.
So he's being all judgey about it. I'm probably going to be slapping him upside the head at some point.

[countrygirl2]

I've been through this stuff.  Honestly, I feel for the girlfriend, how old is she?  You can be so well intentioned and quickly get overwhelmed with the full time care of someone ill.  It is a big problem for family and everyone. 

MIL went berserk as did her sister, they both still blame me for being there.  Sometimes they say they realize they should be there, other times they want out. Even with them in assisted living hubs is over there 3 times or more a week.  It's sad and hard on everyone with illness in older folks.  I feel so sorry for your dad Bonny, sounds like he is going to suffer so and for all of you too.

empress I don't know how you can bear up. both of you need help.  I know the person in need will fight it, they don't realize the toll it takes, I'm sorry, but at some point you have to save yourselves.  Hope you can get the help you need.

I pray MIL's expenses don't get higher then her income and money she has left, I cannot take care of her and would have to leave if that happens.  I'm to beat up from DD and from my mother in the long past to personally have to do it. I don't think it will, but in our case I can see MIL living to at least 100. 

[Bonny]

Jan 7, 2019 22:35:45 GMT -5 countrygirl2 said:

I've been through this stuff.  Honestly, I feel for the girlfriend, how old is she?  You can be so well intentioned and quickly get overwhelmed with the full time care of someone ill.  It is a big problem for family and everyone. 

I'd have a lot more empathy if she wouldn't refuse the help that's offered. Palliative care would come to the house. Both me and my uncle have offered to take Dad to appointments. My brother too. She refuses our help and doesn't want anyone in "her" house.

In my book you don't get to complain about my dad (or his family) being too much work and then refuse help when it's offered. I've told her I would pay for housekeeping or yard work. She refuses.

My uncle called me today and said he had to call three times before she returned his call. He's starting some training beginning February 4 and won't be able to make Dad's birthday on Feb 27. He offered to come at the end of this month and take Dad to appointments and she said she had it handled. He said he felt like she was telling him not to come.

I told him that he has a right to see his brother and this trip might be the only chance he has to see him before he dies. He's going to give it a couple of days and call her back with a "this is the only time I'm going to be able to see him for months" talk.

I'm going to have to do something similar when I come at the end of the month. My plan is to check out nursing homes and visit with the oncologist.

[countrygirl2]

How old is the girlfriend?  Is it possible she is having  issues mentally?  Not knowing anything just guessing.

[Bonny]

Jan 8, 2019 18:57:30 GMT -5 countrygirl2 said:

How old is the girlfriend?  Is it possible she is having  issues mentally?  Not knowing anything just guessing.

I believe I already posted that she's 82. She's actually pretty strong physically. She and Dad regularly did a lot of garden work and hauling stuff around.

I do think she may be having some mental problems due to some medication she's taking. She's also not sleeping that well. She really needs to take a break but refuses to accept help. It's the classic "You can lead a horse to water...".

What is troubling is she is not answering questions about how he is doing (or her either). I realized when I was visiting that they are both pretty paranoid. I blame part of that on watching Fox news. That's not a joke. They are isolated and I'm afraid that kind of rhetoric feeds isolation.

Neither one of them told me about the cancer diagnosis earlier this summer until they were at crisis state and I had to drop everything to come down and help. She would have not told anyone in his family about the re-occurrence of cancer had I not called, got a bad feeling and contacted his oncologist. As I said to her "His family has a right to know he's dying".

Now we're in another self-created crisis.

[TheOtherMe]

Both of them are probably overwhelmed, but it's not helping by turning down help.  Like you said, you can't force them to accept the help.

[countrygirl2]

Believe me at that age they both need help, they most likely will not take it either. We were going to try to get MIL and her sister help so they could stay in their homes, no way in hell.  You will find as they age, somehow the understanding isn't there for many.


If I were you, and this is just my advice, you need to get your dad in a home somewhere, I know what its like to work and deal with this stuff.  I had to quit to deal with it. I don't advocate that.  But take care of it before it gets to be a dire emergency placement.  They will likely both fight you all the way.  But you have to do what will keep them safe.  That lady is to old whether she is physically strong or not to be dealing with this. You will never get them to accept help. Does she have family that will help her?


Hubs went over to put meds in the locked safes for both old ladies.  The admin said MIL had no socks, I just bought her some 2 weeks ago and I write names in everything.  Hubs went to check his aunt and see why her son can't call her.  He said they looked everywhere, she must have hidden her phone somewhere, they never did find it.  What sense does that make?  He had to go buy her another one.  He got one that plugged in only, no separate pieces.  But while hunting they found stacks of socks with MIL's initials in them.  The lady said they find all the clothes in his aunts room and all the blankets in MIL's room.  When some people get old they do just weird stuff.