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My mom is 65 and doesn’t want Medicare and has no faith in her doctors care and has had two strokes. She has office of private management government care health insurance with Kaiser permnate and they are not the best healthcare provider in the world sadly. She is currently trying to do physical therapy and is too tired to practice and is suffering from swelling muscles and depression and frustration which she ends up screaming at me over the littlest things. I live at home with her and dad who has also suffered a stroke and heart attack. My question how do I convince her that if she doesn’t seek treatment for health problems because the stroke that she will be able to move on from physical therapy to occupational therapy? My only thought is if she doesn’t get what she needs from in home therapy then I’m thinking of trying to get her living assistance at home which she doesn’t want because of pride or Covid or feeling embarrassed when the fact is I can’t do it all. No matter how much I do her needs can’t be met by me alone. My dad can’t help he just watches tv all day and not really being helpful to talk about it and is having a hard time himself by not showering just washing up. I know many here say that I just should just leave them and go my own way but I’m currently trying to get myself together through visiting a back doctor for my injuries I got a few years ago in 2016. So my options as a caregiver is very limited and any advice from those who are or have been going through the same things life throws at us would be helpful cause some days like today I just need a break. I help her with taking a shower and meals and even balancing the bills and sometimes my dads stuff. Should I just wait til she gets sicker then get power of attorney and then sign her up for Medicare and then ask a doctor for living assistance? Cause some days I want just be able to take care of me only. Get a job after healing from my injury almost fully and get back to living cause right now I’m just in limbo. Feeling like my life is put on pause the only good thing I can think of is my school debt got canceled due to fraud as Biden administration shutdown the collections. But after that my life has been just sitting at home watching my mom suffer and get at me constantly. I try to in courage her and show her that a positive change can happen but she refuses to see it. This could cause more health issues for us both so any good advice would be very helpful and sorry for venting so long. Thank you and she also has memory problems as well. I know I’m wrong and should never shout at her but she won’t let me help her because of her loss of independence and won’t seek console support for it and I’d be willing to go there with her.

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A PACE program is  in some states If she is over 55 and  has medicare.
Services include home care and meals.

https://www.medicare.gov/sign-up-change-plans/different-types-of-medicare-health-plans/pace
 
Program of All-Inclusive Care for the Elderly (PACE) is a Medicare and Medicaid
 program that helps people meet their health care needs in the community instead of going to a nursing home or other care facility. 
 
With PACE, you have a team of health care professionals working with you and your family to make sure you get the coordinated care you need. Usually they care for a small number of people, so they really get to know you.
When you enroll in PACE, you may be required to use a PACE-preferred doctor.
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Just some clarification here. Are you referring to the federal government Office of Personnel Management? Your mom has Kaiser through the Federal Employees Health Benefit (FEHB) program? That won't likely be a Medicare Advantage program if she's paying for it out oc her pension.
Federal Employees pay into Medicare so she is likely to be eligible for free Part A. Part B would still cost her. Have you actually checked to see if she is eligible for Social Security? Under the old PERS Federal retirement system she wouldn't have paid into SS. However back in the 80s a new retirement program called FERS, Federal Employees Retirement System, came into effect and new employees and some others transferred into the new program. In FERS, people were and are paying into Social Security. At mom's age she might have had FERS and be eligible for some SS benefits. You might check that out if you otherwise just assumed she was not eligible because of working for the federal government.
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Cutlass101: Perhaps both your parents require managed care facility living.
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It’s an overwhelming time.

Try your best not to panic.

Transition to only one or two (or as few as possible) changes at a time. If you are overwhelmed, your parents are feeling worse… keep that in perspective.

Your dad’s TV habits may be a way for him to hide from his problems. Watch them both for signs of depression, which will exacerbate the stress. When depression does strike it takes a month for antidepressants to become effective, so you will suffer more if you have a stretch of time in denial.

Get a little help if possible to assist in the jobs you find the most difficult. (For me it was showering). Getting an infrastructure in place is always a good idea in case of emergency.

I’m sorry for your pain. Understand that you are grieving these changes but never forget that these will be “the good old days” of the future. Appreciate every moment and try to find the positives.
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Try the approach that YOU need help, not her. Remind her of your own back injury and if her heath were to go downhill, everyone in the house would be in jeopardy of having to find some other kind of living arrangement.

Of course she's frustrated and angry. We probably all would be if what we were doing independently last week is now a dependence on others.

As for her not following up with exercise, it appears that reminding her or telling her to do it doesn't work. Have a conversation that is calm and just question how she wants to move forward. Allowing herself to get weaker or not handling a medical problem MAY mean that she could become immobile and a good chance she won't have a say so in where she lives or who handles the care. Ask open ended questions so that perhaps she will participate in the conversation: If you could no longer get around the house and I couldn't physically move you around, what do you think we would do to care for you?

I'm not sure what kind of assisted living at home you're talking about. Check the Kaiser insurance she has - my guess is it's a Medicare Advantage plan with Kaiser. It should have very similar benefits as Medicare and probably a little more (kind of like Medicare plus). There is a good chance Kaiser policy covers some in home health care just like Medicare - weekly nurse, physical and occupational therapy, some drs available to do house calls like podiatrist.

If she flat refuses to see a doctor, it's not really going to matter if she has Kaiser or Medicare.
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As long as you are living in your parents' home, you will be expected to help them in whatever ways they need or want, and those needs will increase dramatically as time goes on. If this is an arrangement you have made in return for free room and board, you may need to re-think your living situation before your parents will stop relying on you. Why should they hire outside help if they can het you to help for free?
Health insurance is not going to pay for day-to-day help whether the insurance is Medicare or Kaiser or any other company.
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Since you have health issues of your own, you need to focus on getting better. Spend some time considering what you need to get physically stronger/healthier and what kind of work you can do that will allow you to support yourself. Then, calculate how many hours per week this is going to take. Also, throw in at least 1 hour per day for "me time" and a couple extra hours per week to develop friendships/social life. After you have calculated how many hours per week this will be, you will be ready to address the "we need more help" issue.

Tell your mom and dad that you need others to come in and help because you can not do it alone anymore. Let them know the amount of time that will need to be covered by other "helpers". Let them know that you will help to set up appointments for interviews and be there for the interview process. Then, ask family, friends, members of your faith community, home health agencies, sitters... to get involved.

If you can not get enough help, it might be time to talk to your parents' doctor(s) about assisted living facilities versus skilled nursing facilities and what their health insurance will pay for.
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Cutlass101 May 2023
Thank you you’re right I have to consider things and I’ve gotta manage my health first far as back doctor and then ear specialist and internal medicine doctor. Once I get these things settled and taken care then I got to get back into part time work. The only thing besides that is my mom is trying to get rehab which will take awhile and she only wants to see a therapist once a week which isn’t a enough and she may start to realize like she said if it doesn’t work then she must go into a center do what she must once a week and I’m willing to take her there with lysol and all. But bottom line I gotta get myself right then figure out work and be able to pitch in to get in home health care or anything else thanks for making me realize this!
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Please contact Adult Protective Services to evaluate BOTH parents for assisted live. It sounds like strokes have forced your parents to live in limbo. Unfortunately, you have your own issues to deal with and your parents are not part of the solution.................on and on and on it goes unless YOU break the cycle and to learn how to pivot to new paths.

Let APS decide what professional care your parents need and figure out how to get it paid for..............free yourself so that you can deal with your future. Please seek out a CODA meeting (Codependents Anonymous) to help you with separation anxiety.

Mindfulness Meditation can offer you calm and serenity.
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Contact the State Department of Aging and the State Department of Social Services. They have numerous resources and are there to help. It's a lot of paperwork but they also have Social Workers to help with that too!

Just from reading the thread, your Mom sounds competent enough to sign a Durable Power of Attorney. I know every case is different but my Mom just signed one for me, she is 89 and was diagnosed with unspecified dementia in 2018. The notary read it to her and asked if she understood her rights, told her she could revoke it if ever necessary and asked her to sign her name.
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You HAVE to take care of YOUR health and household first. If mom and in the future dad refuse to make your life easier, by agreeing to what YOU need to make it work, step away for a while. A sudden void in care/help may open their eyes and get them with the program. Good luck. My advice is only working somewhat with my mom because I found her near death in her own home and removed her 125 miles near me. She was placed in a lovely group home who nursed her back to health. She hated it and caused problems..... She is with me now. I do not tolerate her attempts to manipulate.
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Hello: I just read a clause in the Durable Power of Attorney for Health Care (free form) and it sounds to me that you can get Medicare or Medicaid on your parent(s) behalf.
"My Agent shall have full power and authority to do anything as fully and effectively as I could do myself, including the power to make health care decisions and give informed consent to my health care, refuse and withdraw consent to my health care, employ and discharge my health care providers, apply for and consent to my admission to a medical, nursing, residential or other similar facility that is not a mental health treatment facility, serve as my personal representative for all purposes under the HEALTH INSURANCE PORTABILITY and ACCOUNTABILITY ACT (HIPPA) of 1996 as amended, and to visit me at any hospital or other medical facility where I reside or receive treatment".
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Cutlass, you have a lot on your plate, but perhaps prioritize the tasks: 1) First, get medical help that you need, but also please see a Counselor/Therapist who can brainstorm these many issues with you. The counselor does not need to be someone who is an expert with stroke survivors care. The counselor is for YOU.
2) Find a part-time job or work as a volunteer, if no "paying job" can be found. This will build up your self-esteem and give you more 'backbone' in dealing with difficult Mom 3) Kaiser Permanente surely must want your mother to be on Medicare or at least on the "Kaiser-managed Medicare". Your mother is totally misunderstanding Medicare, thinking it will be in ADDITION to what she's already paying. Your Mom must immediately get enrolled in Medicare Part A or face life time monetary penalities. Talk with Kaiser about someone who can explain the wisdom of Kaiser-managed Medicare (part B). Please share with Kaiser on the phone that your mother has suffered 'Cognitive Impairment" with her strokes and that you need Kaiser's help in getting her enrolled in their version of Medicare. This list (and there are more things, I know, to address) should help you make a start. Getting out of the house to a part-time job is vital for you.
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1) you need to pay your bills and your student loans after things get back to normal with the gov't You are not obligated to pay for them. You will also be in quite a bind being unemployed and if one of them passes or ends up in a NH on Medicaid, your combined income will deminish. It sounds like both have diminished capacity to make important decisions. There is no way to convince a stroke person or one with dementia to reasonably think.

2) POA if she allows will not allow you to put her on Medicare or Tri Care. She needs to do it. Only other answer is guardianship which is expensive. Unless one of them is hospitalized and becomes an unsafe discharge, you have to wait and claim unsafe discharge and tell them she cannot afford private care. The hospital can become the next go to probate where she will be assigned a guardian and will then be elegable for Medicaid.
3) Walk away and let the chips fall where they land, which will most likely be another hospitalization. If they become on their own, then you can say that there will be an unsafe discharge. Imagine how your life would be becoming independent again and just having nice visits with the parents when they are tucked away in facility care.
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i would suggest that you talk to Kaiser as a start. Ask to talk to a financial counselor. Since they have your Moms birthdate, they know the situation with Medicare. Because your Mom is not yet 66, she is not eligible for full social security benefits, however, she could be eligible for partial benefits or spousal benefits. However, to talk to Kaiser, you will need to get the HIPAA form signed allowing you access to her medical records. They have a good portal that will allow you to see the results of past tests and visits. It is quite likely that you are not getting the full picture of your Mom’s health.

Recovery after stroke is very hard. Your parents might qualify for 24 hour care and Medicaid. Again, Kaiser could guide you in this area.

My brother had 5 strokes which were considered mild. He was no longer allowed to drive and could not be left alone. 2 years later, he was diagnosed with pancreatic cancer. His wife filled out financial aid forms with Kaiser, and also POA and medical POA. He died about 2 months later and Kaiser’s financial aid took care of the entire bill. He did not have to eliminate any assets to get the financial aid. He had 3 rentals which paid his mortgage, and a wife who worked clerical jobs when he got the strokes.

PT is hard work, depending upon what part of the brain the stroke damaged. However, it is possible that there is more going on. Did your Mom tire easily before the stroke?

Tell your Mom that you want to be a partner in her health. However to be a partner, she needs to sign the HIPAA allowing you to be her extra eyes and ears in her health care. Then be her health advocate.

i suspect she doesn’t like her primary care physician at Kaiser. Work with the care counselor (again you would need HIPAA signed) to see if it can be changed.

Get a good understanding of her medical situation. Then try to be a little goofy while you are giving her care. It may make her more receptive to your suggestions…..get access to her medical records.
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I got the same problem, my mom needs to use a walker and wear a Depends, but won't do either...won't sell her house...the level of worry I have keeps me up at night...I finally convinced her to see the ortho doc about her hip, but she won't let me drive her there and thinks she's coming right home after the doc visit, which is outrageous!...if the doc doesn't admit her when he sees her, there's something wrong with him too. All I do know is...don't wait till YOU are the one in this position!...downsize early and set up for care early.
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ConnieCaretaker Mar 2023
Please call Adult Protective Services to evaluate for placement and Medicaid application.
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NO ONE can do it all. Figure out what you can manage: tell your parents what that is, and hire help for the rest. There is no other way. You have to take care of YOU to be of any help to anyone!
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Cutlass, please call Kaiser with mom. They almost certainly REQUIRE her to enroll in Medicare Part A ( I belive is is automatic, and free).

She needs to find out from Kaiser if she is required to sign up for Part B (and yes, there will be a substantial LIFELONG penalty if she doesn't do this timely) so call today.

Is she still working? To my knowledge the only legitimate reason to delay signing up for Part B is if you can show credible, comparable employer insurance.

Medicare for Dummies is a wonderful source of information.

https://healthy.kaiserpermanente.org/shop-plans/ready-for-medicare

Also, there are folks at www.bogleheads.org who understand the intersection of Federal Employee Health Insurance and Medicare. Asking questions there will get you terrific information.
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" I live at home with her and dad who has also suffered a stroke and heart attack."

As long as you are there to take care of their every need, nothing will change.
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Cutlass101 Mar 2023
So you saying I should leave I wish I could but this takes time and I must get myself together before I can just pack up and leave but I respect your answer thanks
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If a person qualifies for Medicare and misses the enrollment period, there may be a penalty for signing up later.

Maybe your Mom will listen to a professional advising her. Like a Geriatric
Care Manager.

Apologies, I have no further details.
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Cutlass101 Mar 2023
Thanks send for message and I will have to look into this for her at some point. I don’t know if Kaiser has such a thing or I’ll try a google search for more details and yes she is aware of penalties but feels that she will be paying double for health care and Medicare when in fact me and dad tried to get her to see that you gotta have back up plan when things go south it’s been tough but I think dementia is causing this so I have to see what else can be done as time goes on.
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It doesn’t seem like either of you are benefiting from this situation.

I understand your desire to help your mom but she isn’t cooperating with your suggestions in order for her to see improvement.

What has your mom’s doctor said about her condition?

So, I would back off for now. Focus on your own needs to get your life back on track.

Wishing you and your family all the best.
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Cutlass101 Mar 2023
Thank you need and yes it’s not a great situation we had her first doctor who had retired wanted her to take a ct scan to see why she has the swelling she didn’t want to do. The second doctor was a young and didn’t speak English well but tried to give her a water pill for the swelling and didn’t give much medical diagnosis except that her kidney function was low and was told by a kidney specialist that she would need another blood test to see what’s going on. She got mad at the doctor and me and refused to follow through and they took her off blood pressure water pill. So she went for a third doctor and this one gave her a water pill and advised her to see if she would take another blood test to see why the swelling is happening and she won’t really ask to many questions for her condition and the doctors under this health care plan don’t seem to want be the to caring but just at the limit for 20 minutes so they don’t want set her up with a damn team or anything unless she saids give it to me and damn shame so yes I’m gonna take your advice and step back. When she goes into the hospital I’m have to step up and help with dad to try something different instead just let her out the hospital after short treatment and then I’m stuck with everything. So at this point I’ll do a little but I’m still going to the back doctor and getting what I need so that I can try and be at my best when the shit hits the fan sadly to say and thanks for your advice need sometimes gotta hear it from someone else!
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I would say that Moms strokes have caused Dementia. If so, it will be hard to get POA because she is not competent to assign you. If there is no formal diagnosis, I would try to get it now for both parents. Tell them if they do not assign u POA, then the State can come in and take over their care and their money. (money part might get them to assign you)

Mom really has no say when it comes to Medicare. If not taken at 65, there will be some big penalties when she finally does. If she is already collecting SS, Medicaid A&B are automatic. The card just comes. If not collecting her SS, then Medicare needs to be applied for. I would call ur local Social Security office and ask what you can do to get her signed up. That with two strokes you don't think she is competent to make an informed decision. When the card comes, you hold on to it, don't show her. Be aware though, because of Part B, her SS, if receiving it, will be less. If not receiving SS, then she will be billed monthly. She maybe forced to get Medicare at 65. You need to call Kaiser. My husbands BC/BS is Union. When we turned 65, they changed our coverage to a supplemental. With supplementals, they only pay what Medicare doesn't. So Mom may end up with no insurance at all.

If your Mom is suffering from a Dementia, you can't reason with her. I agree, call your Office of Aging saying, I cannot physically care for her anymore. Let them evaluate the situation. Really, its no longer what Mom wants, its what she needs. If Dementia is involved she has no idea of what she needs.
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Cutlass101 Mar 2023
Thank you miss Joann for the advice. Here’s the issues we tried to have her call social security she doesn’t want to pay monthly for the service on top of paying for health care. She isn’t eligible for social security due to working for the government many years but can still get part A and B which to me would of been a great ful help because I read part b provides help with living assistance in some cases. I might try get my father or mom to understand that situation with the poa but they may say I’m not ready to go through all the planning but at some point this kinda planning has to happen. I’d hate to see the state come in and take over but I’ll try research that further when given an opportunity. As for last part that is a good idea because some days I tire of going through routines and not enough time to myself until late at night sometimes if she doesn’t want to sleep or has low sugar attacks.Many nights I’ve spent being up late and missing out on my life as a young man has been tough but at some point things must change. The hardest part is getting her to take a test for dementia because of pride or fear but I feel she has it. Because she can’t remember what year it is or the day or what time it is. I have to remind her of important things and write it down on calendar or phone that I have. I guess as it goes I will make that call at some point and let them do the rest because no matter what I do and try to help she pushes me away because she wants to be independent again. Which takes work and managing her symptoms but she doesn’t want to do that and just to sit complain and cry and let me see it all. Knowing that I’m not trained to handle stroke survivors. So I’m take a step back and try to take care of myself starting with my own back problems and other health needs so that I can be around when things go really bad and perhaps I can then get the recommendations needed far as assisted living involved at some point. But thank you for your wisdom and info I’m hold my card of options close and like a poker player put them out when the time comes.
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Sounds like the strokes have caused dementia in your mom, especially that she refuses Medicare which is of benefit to her.

My DH and I have had Kaiser Permanente for 20+ years now and with their Medicare plan, absolutely every medical issue a senior may have is covered in a "one stop shopping" sort of environment.

My dh was sent to the Mayo Clinic for a liver transplant and paid for hotel accommodations as well as the 2 surgeries involved.

I was dxed with stage 4 metastatic cancer and set up IMMEDIATELY with immunotherapy treatments by Kaiser. Which was crucial bc I'd been given 2 months to live at that time.

Get mom tested for dementia with a SLUMS or MoCA test if she's agreeable. Then insist she sign up for Medicare immediately (hopefully with Kaiser) or you'll have no other choice but to stop helping her because she is hellbent on killing herself thru neglect and due to pride.

Both of your parents would be best served in Assisted Living and selling their home to finance it, if necessary.

If they refuse all of your help, then you have no other choice but to leave them be and wait for The Phone Call they're in the hospital. Mom won't be released to live independently anymore and then she's forced into managed care against her will. Her choice.

Best of luck to you
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Cutlass101 Mar 2023
Thank you for sharing your experiences and thank god you survived cancer and your significant other had that liver transplant. It’s good to see Kaiser work for you cause I haven’t seen those kinda results not that I’m looking forward to seeing my parents get sicker and need those kinda treatments but every little bit helps and their treatments for stroke management was lacking except in my dads case. He was able to spend time in a rehab center and get his needs met precovid. Mostly in my area they are short on doctors and when my mom or dad go to see the doctors they are a bit to relaxed when it comes to the health of their patients with only a 20 min time limit it’s hard but I wish and pray that my mom have a doctor that would take the extra step to give my mom a health care team. Far as a dementia test she may not agree to that due to various reasons of fear and pride and more arguments. My thoughts are she just wants to take risk and wing it and pay for later with more bad health. Which in turn brings more stress to me. I wish she could understand this more clearly more than anything else so I’m take your advice and step back a bit and let things play out. Living assistance has always crossed my mind. My father has Medicare part A and b but feels he may not need assistance but I beg to differ he doesn’t take showers like he used to and doesn’t eat a lot foods but is on heavy medication that makes him go to the bathroom a lot. So it’s a tough one and yes I’ll be making that phone call i dred most cause I live with them everyday. Maybe when it comes down to that she will finally see that she understand her needs god willing while in the hospital and it can be met hopefully not against her will but if so be it. Thank you lealonnie and I’ll try update you throughout the situation.
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Why doesn't she want Medicare? It's a gift to her from the U.S. government. If she is eligible, she should have it. Does she understand what it is? Is she capable of understanding what it is? I believe she must be at a more advanced stage of dementia than you think.

If she's had two strokes, hasn't someone at her doctor's office advised her, asked the above questions, and outlined her options for care? Isn't she under a doctor's care now?

Once she gets sicker, how is she going to grant POA to anyone? That may be impossible already.

There are a lot of things going seriously wrong here, and you need an advocate. There must be a council on aging where you live, so call them first. Then try other places if necessary. (An Alzheimer's support group, a stroke survivors' group, AA if alcohol or drugs are a problem.) Don't give up until you get help.
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Cutlass101 Mar 2023
Thanks for your answer fawnby and yes she understands it but feels that she doesn’t want pay double and she is paying for her health care and fathers. Plus she may have dementia since she can’t remember things the date or time of day or important events or certain memories. Far as doctors go none of them have assigned a team to help her completely she has to ask for it and she has had only asked for rehabilitation two times two different years in home therapy. Three doctors for internal medicine and sadly with this healthcare system from Kaiser you have to be proactive and ask for help to get a team. Which she isn’t willing to do so and she lives in fear and pride and wants to risk her health at some point. They are aware she has had two strokes but she likes to sugar coat it and say everything is fine but it’s not. They should have insisted but you can’t go against a person will unless they are in a hospital perhaps but i remember she didn’t want to have surgery done for her kidneys cause they said she had stones. So she got upset and angry at the doctor and demanded to come home. So it’s fine line if I don’t care about myself or health to much but I’ll get small treatments while getting on my other family members nerves. Manly me at this point. As for the suggestions I will do those things far as calling office of aging and look into other groups because every little bit helps. I always say that if I get into a very bad health situation I’m still going to ask for help no matter what I’m going through even though the chances of dementia go up more after strokes. So I see what you mean I gotta step back and try my best to take care of myself as well far doctor visits and s forth. Thanks again and I won’t give up
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Writting it all down can help. Sometimes the issues can be numerous & feel overwhelming. But sometimes the simplicity of the black & white text can offer some clarity. Journalling has helped many.

It's nice you decided to assist your parents. Was this a short-ish term plan? Or a long term plan? Either way, it seems it is time for a NEW plan.

Would you consider talking through the issues with a therapist or councillor? Someone to listen & bounce ideas off? Support for setting new goals - to reconnect to your own life plans?
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Cutlass101 Mar 2023
Yes Beatty I’d love to listen and talk with counselor to help me out. Even through my mom wasn’t really happy with the idea and got mad at me for mentioning it. So I have to do it in secret. The plan just came up right into the pandemic after almost fully recovered from a back injury I still have and going to a back specialist to check out since I had this problem since 2016. There was no plan everything started to happen as I was about to get back to work the pandemic came and then my mother got sick. I got stuck with helping to take care of her since 2020. I was about to take care of me when suddenly all these issues just hit me like freight truck on the highway and I couldn’t see it coming. So I’ve been dealing with things as they happened. But good idea I could use someone to talk to with ideas or a counsel member who is an expert who deals with stroke survivors who can maybe help me cope with the issues I’m dealing with. I’d love reconnect with my life plan I have a ton of things I want done but I gotta go through the motions. Thank you for the advice and take care
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