My Mom is 84 living by herself in Fla. She received diagnosis of Bladder Cancer in March. She told no one and is still refusing to seek further medical care. My sister and I found out about her illness in August when I traveled to Florida and forced her to see her general practitioner (took 2 hours of coaxing to get her off the couch for 5 min drive to the office). I learned she had missed 4 Urology appointments they had set up for her so that Urology office banned her from the practice. She repeatedly says she has no pain and will only seek medical care when she has pain. We have explained countless times how now is the time to act before pain sets in. She says she'll think about it but then never agrees to go. My sister just spent 10 days with her and heard her crying in the bathroom as she stood outside her door. When she questioned why she was crying, she acted as if nothing was wrong and denied having any difficulty urinating.
We are also seeing symptoms related to Stage 3-4 of Dementia. Hard to tell how much is related to depression vs the dementia. Her short term memory is very bad at this point. She misplaces things, asks same question several times within a few minutes, does not know what day or month it is but remembers things from 6 months ago. We believe she is lying about her personal hygiene and gets very angry and frustrated quickly. Has difficulty keeping up with routines (forgets to take garbage out) and most concerning, cannot manage her medications responsibly. We had a nurse come in 6-7 times to monitor her vitals and watch the medication intake and she confirmed she was incapable of taking her pills properly. A report was sent back to her doctor's office as the nurse was concerned about double dosing and that she could be a danger to herself. The medical office manager told us if Mom doesn't agree to come with me (in NY) or my sister (in Boston) , or seek medical attention, she will have to call the Dept of Child & Family Svcs and they will look to place her in a Florida state nursing home.
My sister and I did not have this with our Dad who passed in 2001 in a Florida hospital. He did seek medical attention and did not have dementia. We are struggling to get answers and feel paralyzed not knowing whom to turn to for assistance. We do not want guardianship as she is still very aware of what is going on. We have called 3 different law offices in Florida and have not been receiving call backs (perhaps due to Hurricane Irma)? Frankly, I prefer to deal with a lawyer in NY but am not sure that is wise since Mom lives in Florida. We do have Durable POA from 2005 which includes a medical clause. We also have her Living Will and Health Care Surrogate. I have been told we may have issues with those documents as Florida changed the POA guidelines in 2012. Mom does not have many material assets at this point and has a Reverse Mortgage on her condo so the funds are very limited. I believe if she applied for Medicaid, she would likely qualify. Even if Mom had the money, there's no way she would agree to assisted living or a nursing home. It's all very complicated. Dad was a war veteran so I just applied for the Military Papers from the National Archives in case we do have to place her in a nursing home. It can take up to 90 days to receive those papers.
I did reach out to a Geriatric Care Manager specializing in Dementia patients, but her quote was $550 for an assessment of Mom and then subsequent fees for care management are $115 per hr during the week and $140 per hr on weekends. This sounds steep to me but if that sounds right to anyone, please let me know. They are Registered Nurses.
The urgent issue here is getting her to see a Urologist to assess the cancer and see what options (if any) she has to treat the disease. She does have a rash on her leg, arms and back which we have been told is related to the cancer. We considered calling an ambulance to get her to the hospital but were advised the insurance co would not consider that an emergency and Mom can still refuse to go. If we call the police, they will take her to a psych ward...which is out of the question. The physical distance between us just adds to the stress and anxiety of it all. She no longer has the support of friends and family down there as most have moved or passed away. She refuses to leave her condo and digs her heels in at the very mention of coming to NY or Boston. Our last hope is that her sister (who lives in France )says she will come next month to see if she can change her mind, but that is still 3-4 weeks from now.
If anyone has any advice or suggestions, they would be extremely appreciated.
LD
Many of us here have had great success with having our elderly parents seen by geriatric psychiatrists. Many elders become calmer and less stressed once on antidepressants and antianxiety meds.
To: BarbBrooklyn:
I did contact the Council of Aging in Volusia but Hurricane Irma damaged their building in Daytona and I think they're working out of a makeshift office. I called them a few days ago and couldn't get anyone on the phone. I will try again on Monday. I realize Mom cannot live alone, but the problem is she doesn't and is refusing to leave her condo. I believe a non family member may be the only way to get her out as you said. However, even her Doctor said calling the police is very traumatic and serious and the psych ward is not the right place for her. She did let the nurse in a few weeks ago so maybe she will let the Geriatric Care Manager in too. Regarding a Florida State nursing home, I've heard very mixed reviews about them and the recent news of 8 deaths due to soaring temperatures does nothing to reassure me they will take good care of her. More importantly, Mom is adamant about living out her life at home, perhaps with hospice or aides coming to the house, although right now she feels she needs no assistance at all! Thank you very much for the info on the GCMs. I will check out the link you sent. I think that may be the right resource to use in this situation, at least in getting her assessed. Otherwise I feel like we are just waiting for something awful to happen that will land her in the hospital. I totally agree with you about finding just the right person who can read and connect with her. Although I know she loves us, she is dismissing us as her daughters and does not want to be told what to do by her children.
To 97yroldmom:
Yes I will continue to pursue a Florida lawyer's assistance as she is refusing to move north. The original documents were prepared in Florida. Good question about Mom signing new documents. It's hard to get her out of the house now so really not sure how to answer that except with a maybe? No she has not had any neurological testing. It's nearly impossible to get her to the doctor. She almost passed out from stress and anxiety the last time I forced her to go to that last appointment. I did present the POA to her doctor's office and they did give me copies of the CT Scan that was done in March. Thank you for your sound advice.
To: JeanneGibbs
Great dialogue suggestion. We said very similar things but will try again. The pills are for cholesterol, blood pressure, and Metformin for sugar. Nurse asked if doctor would discontinue them for her but he said the risks are greater taking her off the meds. My sister and I are ordering prepared foods for her from Mom's Meals and also from Publix. We are trying to keep her in her home for as long as we can because that is what she wants. Mom's funds are indeed limited and so are ours. We've been so busy saving for our son's tuition (he's a sophomore in college) , we didn't plan for elder care expenses.
We will talk to a lawyer about Medicaid and what types of services they will cover. I'm hoping my Aunt will stay for at least one month to be with her. They have a close relationship. If my Mom was well enough to travel, there's a remote possibility she would return to France to live with her sister but we may very well be passed that point now. It all depends on the update of her condition. I will keep you posted on the progress we make in the coming weeks. Thank you all again very much!
LD
I will tell you that my midwestern cousins found that the only way that they could continue their jobs was to hire a GCM in Florida; Uncle was attempting to wander on the highway, beating up Aunt to get the key to get out. Aunt insisted she could handle this....um, both in their 90s, NOPE.
GCM took aunt to several facilities to tour and guided her well. she was finally able to "let go" and allow Uncle to be placed. He did amazingly well. Aunt, unfortunately, died of a massive heart attack a month or so after Uncle was placed. He lived on, happily.
If you can get the right person, who can read your mom and get her to see that she needs not to live alone any longer, I think that's worth a lot.
Mom wants to avoid cancer treatment. Fine. Try to convince her she can have pain treatment without addressing the cancer.
She probably also wants to remain in her own condo. That is more problematic, with her cognitive decline. She can't reliably take her pills. What are the pills for? What would happen if they were discontinued? Can she afford someone to come in daily to see that she takes the pills (and that aren't accessible at other times)? Could she get meals on wheels and/or restaurant delivery and have her stove disconnected? How much help coming into her condo can she afford?
At some point people with dementia really cannot live alone. One solution is to have round-the-clock care. Another is to move to a care center.
I think my inclination would be to enable what Mom wants as long as that is feasible and affordable. (Even if it is not what you want for her.)
I don't know what the going rate for Geriatric Care Manager is, but it would be reassuring to you and Sis (I would guess) to have somebody local looking out for your mom. Have you checked any other services?
I hope her sister's visit will be pleasant for them both. I hope that the sister will be able to influence Mom to consider some reasonable options. But it would be a shame if the entire visit is adversarial. Your mother needs love and support.
Some things I'd keep in mind:
1) Mother is not going to live forever. With cancer, her life is likely to be shorter than if she hadn't gotten it.
2) Mother should be able to decide how she wants to spend the time that is left to her. Like everyone else, she has limitations of income, mental capacity, stamina, etc. None of us can have everything we want. But all decisions should be made with what she wants in mind.
3) Mom probably didn't tell anyone about her cancer because she didn't want anyone to tell her what to do. But now that the cat is out of the bag, you can assure her you won't try to tell her what to do about the cancer, and she may feel more comfortable sharing with you. She should not have to face this in isolation.
My heart truly goes out to you, your sister, and your mother. This is not the end-of-life situation anyone wishes for. May you find the strength and courage to deal with it in your mother's best interest (as far as you can determine that, of course.)
Looks like Barb and I were having similar thoughts.
I am very sorry to hear about your mothers condition. She must be very frightened and confused. I know this is hard for you and your sister.
Just reading your post it seems the only way you can get her to do anything about herself is to utilize the doctors office that said they would place her.
I'm sure you would rather that not happen but I think I would speak with the drs office to see exactly how that would work. It may be what you need to hear to spur you (and her) on to action.
So maybe the next step would be to continue to try to contact an elder attorney for a review of the documents she signed in the past. At least you would know if you have the authority to take a firmer hand. If the documents need to be redone would she go to an attorney and sign new documents?
Most of us with stubborn parents have to wait for an event such as a fall. After a fall they will sometimes agree to go for medical care and then hopefully on from there into appropriate long term care. Of course, that could still happen at any time with the conditions you describe.
Is she still driving?
You may not want guardianship but that may be the only way you can get her help. Even if your DPOA is valid, it may have provisions such as two doctors letters stating that she is incompetent before you could use them to take action on her behalf. Has she had any neurological testing?
Were the documents prepared in New York or Florida?
Unless you plan to take her back to New York with you I don't think I would use a New York attorney. You need to have valid documents for the state she will be living in.
You might call the area on aging in her county and ask for a needs assessment. This might get the ball rolling for her. Sometimes our parents will listen to someone who seems to have authority where they won't listen to their children.
I'm glad her sister is coming to visit. Your mom sounds very alone with this frightening diagnosis.
I hope that one of your calls will connect you with someone who knows just what you should do and how to go about it. The dementia nor the cancer will just go away. Have you spoken to the doctor who gave her the diagnosis? I hope it's not the office that won't see her now because of the missed appointments.
So get an update on her condition. Find an elder attorney. Explain to mom that she has to get checked out so that you know what kind of care she will need. But understand that her brain is broken and that she might not be able to reason that out with you.
If she doesn't want to take action on the cancer, perhaps she will consider hospice or palliative care. You'll hopefully know more after you speak with her doctor.Your POA should get you access to her records from the doctor.
Let us know what you find out.
The local Area Agency on Aging will generally do a needs assessment and advise what services are available. The issue of course, will mom let them in!?. Someone from the famiky really needs to be there.
Your mother cannot live alone. She is past the early stages of dementia and is a danger to herself in that she is not getting care for a terminal illness.
You should persist in finding a Florida eldercare attorney, to get her qualified for Medicaid and deal with the condo.
What is the problem with allowing the State of Florida to place her in a nursing home? She will get medical supervision, her bladder cancer can be treated or she can get hospice services if she does not wish to treat.
She can't care for herself and won't allow you all to get her the care she needs. Having the State step in seems like a good alternative.
Having her worked up in a psych setting might be a good idea as well. Getting her on meds for the depression and agitation that often accompany dementia might make her more agreeable to seeing care or moving, but there are no guarantees.