Elder care for an aunt with schizophrenia. Help me stay sane!
March 6, 2016 5:53 PM Subscribe
Elder care for an aunt with schizophrenia. Help me stay sane!
My 75 year old aunt (let's call her Alice)who has had paranoid schizophrenia since she was 27, fell three weeks ago and broke her dominant arm (right humerus). Alice lives alone in a subsidized elderly/disabled complex in a city right outside of Boston where she has lived for the past 25 years. Her husband, who was also mentally ill, functioned at a much higher capacity than Alice and took care of all the household needs until his death 15 years ago. Since then, Alice has struggled immensely with self-care, household chores, bill payment, etc. After the fall, many issues with her safety and competency have come sharply into focus and I fear that she is no longer safe and/or capable of living independently.
The past three weeks have been extremely challenging for me as her primary caretaker. Alice is my mother's sister -- my mother is away in Florida until April, so it has just been me, my husband, and my uncle (who is 80 years old) helping Alice. Mainly it has been me.
Alice has a caseworker through an agency contracted through the Massachusetts Dept of Mental Health. It has been a struggle to parse out exactly what her caseworker helps Alice with besides acting as her representative payee. The agency receives her SSDI and then pays her rent, utilities, and medical bills. Alice gets a check for $75 each Monday and Thursday for personal spending, which she very quickly depletes on her most beloved items: Cigarettes, coffee, donuts, lottery tickets. She smokes three packs a day, so when her pocket is full she will get Parliaments, when she is running low on money she'll buy $2 cigarillos from the smoke shop. At any rate, this leaves her with very little money to buy food besides her $100 monthly food stamps. Alice borrows money from people, trades food items for money, gets food from the food bank, or begs a family member to take her grocery shopping. When I questioned the caseworker about how Alice's money is handled, she said that she has been trying for years to get an accounting from Alice about how she spends her money. I wondered out loud if $50-$75 a week could be given to Alice in a grocery gift card, along with $10 per week to go on her laundry card. The answer was yes, they could do that, but so far this has not happened.
When I questioned the caseworker about what services they were providing Alice I was told "symptom management and medication management." The caseworker then revealed that Alice decided 18 months ago that she didn't need her antipsychotic medication anymore, so she stopped taking it (Prolixin injection .75 ml every 2 weeks.) Even though Alice had given permission for her caseworker to share concerns with my mother and I, this information had not been made available to us.
When Alice fell she was taken to a Boston hospital. She was refusing to get her arm x-rayed and only agreed to it after her caseworker arrived and was able to convince Alice to get the xray. Alice was discharged home without any homecare services. I called the caseworker the day after the fall to ask for Alice's discharge papers and instructions. After 8 days and three phone calls the caseworker finally returned my call.
Alice was already involved with Elder Services so I called them and asked for a nurse to come out to assess her for a home health aide. The nurse came out after about a week and saw that Alice's hand was very purple and swollen and suggested I take her to the ER. I did take her (this time to a different hospital) , and though it turned out to be normal swelling and discoloring, the very lovely and concerned Nurse case manager quickly put in place RN, PT, OT, Psych Nurse, and HHA services for Alice at home. The hospital wanted to admit her for three days per Medicare regs, and then send her to a rehab to recover. Alice flipped out at this suggestion, insisting that she can take care of herself. She can't, of course, so the last three weeks have been a nightmare of trying to arrange services, prepare for the future, and manage my own job and family. I am burnt.
From the time of the fall to Alice's 2nd hospital visit Alice was calling daily, several times a day, for various things - groceries, help taking a shower, help getting dressed, various necessities - underwear, toilet paper, cleaning supplies, etc. Every time I went to her apartment she was completely naked because she had trouble getting dressed with the broken arm. At one point I arrived and the homemaker, who happens to be male, was in the kitchen doing dishes as she's sitting on the couch buck naked. He has since been replaced with a different homemaker. I have keys to her apartment and found her completely zonked on the couch with a half-burned cigarette in hand. At that point I decided to make a Protective Services report for self-neglect. The case was screened in and Alice agreed to allow the Protective Services worker to speak to me, her doctor, her caseworker, and her Home Healthcare agency. The case is still being investigated and I'm not sure what the outcome will be. There is definitely cause for concern with her ability to care for herself, and she is putting others at risk when she falls asleep smoking.
At this point I've done the following:
-Gotten medical equipment ordered through Elder Services (handheld shower, raised toilet seat, grab bars)
-Applied for a handicap placard for Alice due to her difficulty walking with a cane in her left hand and her broken right arm.
-Gotten Alice back on the Prolixin shot with trickery, bribes, and the help of her PCP.
-Applied for a MassHealth frail elder waiver (she's like 50 bucks over the standard MassHealth limit with an income of $1,100 per month). The waiver would get Alice up to 24 hour care at home should she need it. However, there's about a one month wait for the application to be processed, and then another wait for services to start.
-Gotten Alice's HHA services increased to 3 times a week.
-Gotten Alice to accept home delivered meals
-Gotten Alice to agree to pre-packaged medication in blister packs. Limited success with this as she thinks someone is trying to poison her.
-Gotten her doctor to request a reasonable accommodation for new carpeting in her apartment.
-Requested heavy chore services (her apartment is beyond filthy.)
-Researched different living arrangements for the future.
So what's my question here?
Even with all the extra services that could be set in place once the MassHealth frail elder waiver is approved, I fear that Alice is not safe at home and not competent enough to make a reasonable decision. Her doctor, her psych RN, and I all think that she can't live alone anymore. Alice disagrees and immediately goes to Code Red whenever we mention a different living situtation. She has deep paranoia about being hospitalized against her will, for good reason, and her delusions are mainly about people trying to hurt her. Even with medication her delusions are there, she's just less agitated.
She can't afford Assisted Living and there are very few placements for those on MassHealth/Medicaid. I don't think Assisted Living offers enough support for her at this stage anyways and I don't know if her behaviors would be tolerated. Her psych RN suggested looking into congregate housing or a Rest Home/Level IV Nursing home. Both sound like good options for her - she'd have her own bedroom but there would be a shared bathroom and kitchen, and supervision 24/7.
If Protective Services deems her incapable of making her own decisions, I would consider stepping up as her guardian. I want her to be safe, for others around her to be safe, and for her to be happy with where she lives.
Is there anything more that I have not considered here for housing options? Any recommendations for resources on anything related to the scenario above? I could move on my own to ask the court to appoint a guardian, but this would be very contentious and I'd most likely alienate Alice.
Despite all of her challenges, Alice is very funny, clever, generous, and can be very sweet. She can also be very aggressive and extremely volatile - she's never been violent towards anyone, but she gives scathing tongue lashings to many people while we are out in public. People usually understand from her appearance and general disorganized/nonsensical speech that she's mentally ill, but still, it's difficult.
Any advice or suggestions for this woman I love so dearly would be greatly appreciated. Thanks!
My 75 year old aunt (let's call her Alice)who has had paranoid schizophrenia since she was 27, fell three weeks ago and broke her dominant arm (right humerus). Alice lives alone in a subsidized elderly/disabled complex in a city right outside of Boston where she has lived for the past 25 years. Her husband, who was also mentally ill, functioned at a much higher capacity than Alice and took care of all the household needs until his death 15 years ago. Since then, Alice has struggled immensely with self-care, household chores, bill payment, etc. After the fall, many issues with her safety and competency have come sharply into focus and I fear that she is no longer safe and/or capable of living independently.
The past three weeks have been extremely challenging for me as her primary caretaker. Alice is my mother's sister -- my mother is away in Florida until April, so it has just been me, my husband, and my uncle (who is 80 years old) helping Alice. Mainly it has been me.
Alice has a caseworker through an agency contracted through the Massachusetts Dept of Mental Health. It has been a struggle to parse out exactly what her caseworker helps Alice with besides acting as her representative payee. The agency receives her SSDI and then pays her rent, utilities, and medical bills. Alice gets a check for $75 each Monday and Thursday for personal spending, which she very quickly depletes on her most beloved items: Cigarettes, coffee, donuts, lottery tickets. She smokes three packs a day, so when her pocket is full she will get Parliaments, when she is running low on money she'll buy $2 cigarillos from the smoke shop. At any rate, this leaves her with very little money to buy food besides her $100 monthly food stamps. Alice borrows money from people, trades food items for money, gets food from the food bank, or begs a family member to take her grocery shopping. When I questioned the caseworker about how Alice's money is handled, she said that she has been trying for years to get an accounting from Alice about how she spends her money. I wondered out loud if $50-$75 a week could be given to Alice in a grocery gift card, along with $10 per week to go on her laundry card. The answer was yes, they could do that, but so far this has not happened.
When I questioned the caseworker about what services they were providing Alice I was told "symptom management and medication management." The caseworker then revealed that Alice decided 18 months ago that she didn't need her antipsychotic medication anymore, so she stopped taking it (Prolixin injection .75 ml every 2 weeks.) Even though Alice had given permission for her caseworker to share concerns with my mother and I, this information had not been made available to us.
When Alice fell she was taken to a Boston hospital. She was refusing to get her arm x-rayed and only agreed to it after her caseworker arrived and was able to convince Alice to get the xray. Alice was discharged home without any homecare services. I called the caseworker the day after the fall to ask for Alice's discharge papers and instructions. After 8 days and three phone calls the caseworker finally returned my call.
Alice was already involved with Elder Services so I called them and asked for a nurse to come out to assess her for a home health aide. The nurse came out after about a week and saw that Alice's hand was very purple and swollen and suggested I take her to the ER. I did take her (this time to a different hospital) , and though it turned out to be normal swelling and discoloring, the very lovely and concerned Nurse case manager quickly put in place RN, PT, OT, Psych Nurse, and HHA services for Alice at home. The hospital wanted to admit her for three days per Medicare regs, and then send her to a rehab to recover. Alice flipped out at this suggestion, insisting that she can take care of herself. She can't, of course, so the last three weeks have been a nightmare of trying to arrange services, prepare for the future, and manage my own job and family. I am burnt.
From the time of the fall to Alice's 2nd hospital visit Alice was calling daily, several times a day, for various things - groceries, help taking a shower, help getting dressed, various necessities - underwear, toilet paper, cleaning supplies, etc. Every time I went to her apartment she was completely naked because she had trouble getting dressed with the broken arm. At one point I arrived and the homemaker, who happens to be male, was in the kitchen doing dishes as she's sitting on the couch buck naked. He has since been replaced with a different homemaker. I have keys to her apartment and found her completely zonked on the couch with a half-burned cigarette in hand. At that point I decided to make a Protective Services report for self-neglect. The case was screened in and Alice agreed to allow the Protective Services worker to speak to me, her doctor, her caseworker, and her Home Healthcare agency. The case is still being investigated and I'm not sure what the outcome will be. There is definitely cause for concern with her ability to care for herself, and she is putting others at risk when she falls asleep smoking.
At this point I've done the following:
-Gotten medical equipment ordered through Elder Services (handheld shower, raised toilet seat, grab bars)
-Applied for a handicap placard for Alice due to her difficulty walking with a cane in her left hand and her broken right arm.
-Gotten Alice back on the Prolixin shot with trickery, bribes, and the help of her PCP.
-Applied for a MassHealth frail elder waiver (she's like 50 bucks over the standard MassHealth limit with an income of $1,100 per month). The waiver would get Alice up to 24 hour care at home should she need it. However, there's about a one month wait for the application to be processed, and then another wait for services to start.
-Gotten Alice's HHA services increased to 3 times a week.
-Gotten Alice to accept home delivered meals
-Gotten Alice to agree to pre-packaged medication in blister packs. Limited success with this as she thinks someone is trying to poison her.
-Gotten her doctor to request a reasonable accommodation for new carpeting in her apartment.
-Requested heavy chore services (her apartment is beyond filthy.)
-Researched different living arrangements for the future.
So what's my question here?
Even with all the extra services that could be set in place once the MassHealth frail elder waiver is approved, I fear that Alice is not safe at home and not competent enough to make a reasonable decision. Her doctor, her psych RN, and I all think that she can't live alone anymore. Alice disagrees and immediately goes to Code Red whenever we mention a different living situtation. She has deep paranoia about being hospitalized against her will, for good reason, and her delusions are mainly about people trying to hurt her. Even with medication her delusions are there, she's just less agitated.
She can't afford Assisted Living and there are very few placements for those on MassHealth/Medicaid. I don't think Assisted Living offers enough support for her at this stage anyways and I don't know if her behaviors would be tolerated. Her psych RN suggested looking into congregate housing or a Rest Home/Level IV Nursing home. Both sound like good options for her - she'd have her own bedroom but there would be a shared bathroom and kitchen, and supervision 24/7.
If Protective Services deems her incapable of making her own decisions, I would consider stepping up as her guardian. I want her to be safe, for others around her to be safe, and for her to be happy with where she lives.
Is there anything more that I have not considered here for housing options? Any recommendations for resources on anything related to the scenario above? I could move on my own to ask the court to appoint a guardian, but this would be very contentious and I'd most likely alienate Alice.
Despite all of her challenges, Alice is very funny, clever, generous, and can be very sweet. She can also be very aggressive and extremely volatile - she's never been violent towards anyone, but she gives scathing tongue lashings to many people while we are out in public. People usually understand from her appearance and general disorganized/nonsensical speech that she's mentally ill, but still, it's difficult.
Any advice or suggestions for this woman I love so dearly would be greatly appreciated. Thanks!
Oh, and hook up with your local NAMI branch. They have plenty of "keeping your own sanity" resources.
posted by SMPA at 7:17 PM on March 6, 2016 [1 favorite]
posted by SMPA at 7:17 PM on March 6, 2016 [1 favorite]
Seconding NAMI Mass. That's exactly what they are there for.
posted by Beethoven's Sith at 7:20 PM on March 6, 2016
posted by Beethoven's Sith at 7:20 PM on March 6, 2016
Best answer: I think you need a lawyer who specializes in elder law. It sounds like you will have to move for guardianship before too long, and a lawyer with experience in that area might have ideas on how to make that go more smoothly.
I've been through a similar situation and know how heartbreaking it can be. Of course, you want her to be safe and happy, but you may have to settle for safe. I hope you can find a way to take care of yourself too.
posted by FencingGal at 7:24 PM on March 6, 2016 [3 favorites]
I've been through a similar situation and know how heartbreaking it can be. Of course, you want her to be safe and happy, but you may have to settle for safe. I hope you can find a way to take care of yourself too.
posted by FencingGal at 7:24 PM on March 6, 2016 [3 favorites]
Best answer: Thirding NAMI, they have resources and a lot of good support groups which can be very very helpful. My partner goes to a "friends and family" support group in the Boston 'burbs for people supporting those with mental illnesses. Huge help. They suggested this company, Zalkin Law Firm, as people who can help with issues of guardianship for people with mental illnesses. We've had some short talks with them and didn't wind up doing anything definitive yet. I assume you've read these pages on the MA.gov website about guardianship of incapacitated persons? For the purposes of your situation your aunt would be incapacitated even though that's not how you'd normally understand the word. Happy to put you in touch with my partner as well, his situation is different (son lives at home with him with a mental illness and it's early days yet) but he knows some of the systems decently. My email is in my profile, feel free to contact me and I can put you in touch.
posted by jessamyn at 8:49 PM on March 6, 2016
posted by jessamyn at 8:49 PM on March 6, 2016
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And her doctors may want to consider a change in her meds. A monthly injection might work better, for instance. At her age and with her other issues you really can't screw around with skipped doses.
posted by SMPA at 7:16 PM on March 6, 2016