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I am the caregiver for both my parents. My Dad is 94. Barely able to walk, incontinent, unable to cook for himself or care for himself. Mom was his caregiver for years, but she has had a stroke. I left my job/apartment in N. Carolina to come to Colorado to be the caregiver for Mom. I only learned just how bad it is with Dad after getting here. So..my problems now is that the doctors have such a "don't care, they are too old to bother with any way" attitude. I looked at trying to get new primary care for them..but..no one is accepting new Medicare patients. For example, Mom has new heart condition, and it seems like she is exhibiting new serious problems almost weekly. Now she isn't sleeping through the night besides. She is up 6 to 8 times a night. No one is sleeping because of this. She is a fall risk, so I have to get up with her. The noise she makes wakes everyone. The doctors just "poo poo" this off. She cannot stay awake during the day. She falls asleep during meals, during therapy sessions, etc. I am walking around half dead most days now too. dad is cranky by nature anyway...now he is impossible to be around. What do I do? How do I get a doctor to deal with this..now. Not next month, not in a few weeks if she doesn't improve. This is critical now. I need sleep badly!

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Amen for medical marijuana. Glad everyone is sleeping at night.
God bless you for all you are doing for the care of your parents.
p.s. what a cool job with horses! they are amazing animals.
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I'm so happy for you that you got relief! I'm really glad you found a doctor who was courageous enough to prescribe medical mj for your mom. I think my father in law would benefit from it. My inlaws are not as openminded about it. It should be legal in all 50 states but Big Pharma lobbies against it and the FDA does their bidding, continuing their excuse that it needs to be studied. And yet Ambien, for example, gets approved despite its crazy side effects. I hope that more of us will advocate for medical mj for our elders who are anxious, in pain, not sleeping, not eating, etc.
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Well, we had 4 days in a row that have been pretty good. Got Mom to take a walk outside yesterday. It was slow, but a good walk. With my hand on the gait belt, she didn't wobble even once. I let her off the hook on the speech therapy...it is hard work....so she had Sunday off.

Even my Dad went out for a walk. I think Mom going motivated him. He is much, much slower....we didn't get past the end of the driveway...but it is more than he has done in months!

Everyone ate well. everyone slept well. Dad didn't even complain about the oxygen.

Having doctors that listen and help makes all the difference.
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good news
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Glad that you found out about Ambien. It's not a good med.
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Well...finally! A doc covering for the regular guy in the same practice tells me that Ambien has a long history of causing sleep walking! Ah geez. Would have been nice to know that before.

So...new sleep med. AND, we added medical marijuanna to the list. Everyone is sleeping again! Yea!

Having a decent night sleep is working wonders around here.

Having a doctor actually listen and offer help makes a whole world of difference
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Katiekate: This is going to come across as harsh. You cannot continue like this! You are going to drop over from exhaustion as you're already experiencing caregiving burnout! YOU MUST FIND RESPITE! Check out Nursing Homes or reverse mortgages so that THEY can pay for the caregivers who come in because you're outta there! You have to be for your own sanity.
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I was in your situation a year ago. Two elderly parents both needing your attention. My dad is 98 and mom is 91. Up until a year ago I was driving in 30miles several times a week to help out in their own home. The VA was paying for a home health aide but dad would only let them come once a week instead of 5 times a week and mom refused to let me get anyone else in to help even though Medicare would've covered it for a while. Seems like I was constantly fighting for them and with them. Life was miserable for everyone including my disabled husband. The doctor's just didn't care. All they wanted to do was drug them up. I was worried about my dad because he was trying to handle the situation alone when I wasn't there and he was on the verge of a nervous breakdown or worse. Finally in August of 2015 I'd had enough and just started taking mom to the emergency room. She was there 3 times in August. The last time I told the ER doctor that I wasn't taking her out of that hospital until something was done to relieve her pain. Turns out she not only was suffering from low Sodium, low potassium but also blood clots in her legs. She had seen a blood doctor just that morning who told me the only thing wrong with her was she was old. I was so made I couldn't talk about it without crying for days. The end result is that mom was admitted into a hospital and then a long term care facility. Dad had a stroke and was admitted into the same facility a month later. My brother and I did a lot of research and visiting facilities and admitted them into one that is wonderful. It is set up like a house with the bedrooms are surrounding the outside of the living room and dining room. It is like a home and not an institutional setting. This is called a Green House living community. It has taken them a while but they are finally at peace with living there and with 24hr care I know they are safe. Hardest decision we ever made, but I know it is the best for everyone. Sometimes I feel I didn't do enough but I was so burnt out that even my best was not what they needed. Sometimes they are like children, we have to do what's best for them even when they don't like it.
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Katiekate, maybe you are looking to the wrong people for help. Have you considered something like "A Place For Mom"? I was lucky that, when my mom was hospitalized, I dealt with a social worker who was very. knowledgeable and honest. She opened my eyes to the fact that my mother was no longer able to care for herself, and due to also being a caretaker for my disabled husband, moving in with me was not an option. As my mom has slipped father and farther away due to Dementia, I have realized she was right. Of course Mom wasn't happy about going. No one who posts on any of the pages on this site has ever said, "My ____ was thrilled to have to go into a nursing home." Try researching Human Resources and Eldercare in Colorado. I know it's difficult and may seem selfish to go against your parents wishes, but there are options and there is help out there if you look for it. Good luck.
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I agree that your parents may need a level of care that you are not humanly able to provide, but, if your mom is getting up 6-8 times per night to use the bathroom at home, why would that change if she is in a nursing home? If she's very uncomfortable and sleep deprived, then wouldn't finding the problem and treating it be in line with palliative care, regardless of where she's living?
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Kate, I understand what you mean about doctors. If we're lucky we can find a good one that doesn't move away. It isn't like it used to be. My mother had the same doctor for many years. He had to retire because of his health. It was hard to find another doctor, because many didn't take Medicare or Advantage accounts. We finally found a good geriatric doctor, who promptly went on maternity leave. Then she came back for about a year before moving across the country. My mother's case was given to another doctor, who seems totally clueless. Navigating the healthcare system makes me wish for the old days of the family doctor who had an office in his own building. Everything now seems so unstable.
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KK, I would *gently* disagree with you. Your parents' doctors are not the ones burning you out. They are frustrating you, they are not helping you to the degree you want, but the physical needs for caregiving for your parents IS what is burning you out. Getting a new doctor is NOT going to solve your problems with a 94 year old, incontinent, nearly immobile, unable to care for himself father. As noted above, talk with Area Agency for Aging. Have your father evaluated for hospice - it won't be 24 hour care but it might supplement some of the care needs and get some in-home medical care. A different pair of eyes. As to your mother, have you considered that a part of your mother's health condition may be related to the care needs of your father? As noted above, no one is racing out to live in a nursing home. We all want to stay at home. When my son was 4-5-6 he didn't want to go to school. He wanted to stay home. Think about why the parents of your parents were in a nursing home. Probably because the level of care they required could not be provided by your parents in their home. You cannot do this without siblings, volunteers, or church friends - unless your parents are multi-millionaires - will get you 48 hours of in-home care for your parents (both 1-1). Or 24 hours. Was there a social worker at the facility your mother was at? Does the therapy she is getting have a nurse on call or parents have a church with pastor you can talk to? They are tuned into the services available in parents' area. I have already told my husband that I cannot help him keep his parents at home - COPD, stroke survivor, prostate cancer on FIL; advanced Parkinson's, lymphoma on MIL. They don't have LTC insurance. Their long term care plan is their sons or their wives to provide one-on-care - and it doesn't matter to them if they are devoured alive in the process. Both sons have health issues, both of us wives have health issues. But MIL and FIL have said staying home is more important than anyone else's needs. And what if it is more than 3 years? How long can you do this?
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So sorry you're going through this Katiekate. Your mom is right to be concerned about NH. Sure some have changed, but there are still many lousy ones. Medicare.gov has ratings for NH,ALs, and now even hospitals. It is something you may want to check out. As for doctors, not surprised. Many don't see the need, financially or otherwise to treat older patients, plus they want to protect themselves from medical malpractice if something would go wrong.
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NYDaughterinLaw

Too bad Katiekate's parents aren't in Cleveland. They would have no problem finding at least one Geriatric doctor. One doctor who also is the NH doctor has 12 NPs
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I believe that her profile says that her mom is 89 years old.

Granted, it's likely that due to your parent's advanced age and multiple health problems, the doctors may not see how additional tests and or treatments would be of benefit, however, maybe they would.

I noticed that the way you describe your mom's nighttime issues sounds like something like using the bathroom is getting her up. Is that right? As another poster mentioned upthead, I would explore if a sleep study would be in order. Yes, I know she's 89, but, if she is uncomfortable due to not sleeping and the nights are full of disruption, it might be worth it, IF she would be open to using a C-pap machine at night. Is it likely that she would wear a mask or nasal pillow at night? The machines have come a long way and are super quiet and easy to operate. It does take a little time to adjust to the change, but, if that is the problem with her sleep....it could make a huge difference.

My 82 year old aunt just started using c-pap at night! She was already familiar with them due to her late husband wearing one for many years, though. So it was not a new concept. She had seen how it helped her late husband and didn't hesitate to do the study and start treatment. She's feeling much better now.

What alerted me that I had a problem was that I was getting up multiple times to urinate during the night. It disrupted my sleep. It was one clue of what was going on.

Also, if urinating during the night is causing this disruption, review her meds. She may be taking fluid pills for her heart condition. Can they be taken at a time that would not cause so much nighttime urination?

I might also explore bladder incontinence with a urologist. I'd try to discover what is causing her nighttime problems and tackle them.
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Jeannegibbs-

Does not some help, such as NH,AL, or home health require doctor's orders?
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I've also had to help figure out how to best help two elders who no longer could live independently. It's painfully hard, it's draining, and it sucks. You have my sympathy.

Considering your parents' financial situation, I urge you to get information about what's available in NC for your parents so that you can work. It's great that your job is waiting for you, but how much longer can you afford to not work?

Are geriatricians in your area in NC accepting new patients? It's not that doctors are not accepting new Medicare patients it's that they are not accepting new patients period. Doctors set their own limits on how many active patients they treat. They do this so as to not be spread thin. Geriatricians especially do this because their patients require a lot of their time like when they land in the hospital.
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May I ask how old your mother is?
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Also,,,,please get some extra help for a day and travel to check out the VA skilled nursing care hospital in Walsenburg, Colorado. It is small town, yet great caregiver to patient ratio in a very beautiful setting. Many veteran couples have gone there together. https://www.sprhc.org/
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What part of Colorado are you in? Colorado Springs has "The Bridge" which is a lovely continuing care place.
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Katie
Please consider FF advice to visit places as given your mom's health it is unlikely she will be able to stay home for 3 years and then you'll be in a crisis mode one day looking for a place

Wish there was racing in Colorado for you to stay there - we are so looking forward to breeders cup soon here at Santa Anita
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Katie, the nursing homes from 50 years ago are not the "continuing care" facilities you find today. So I can understand your Mom not wanting to go live in one, those places were frightful back then.

If you get some free time [??] go visit the continuing care facilities in your area so you can see for yourself. Some are set up like hotels tastefully decorated. Others more like a hospital environment. Your parents could possibly share a room.

You will eventually crash and burn from all the work, as you are doing the work of six caregivers, each working an 8 hour shift, but you don't get to go home at the end of your shift to relax and get a good night rest.

As for doctors, once a person reaches a certain age, there isn't a lot that can be done except to make the person comfortable. My Mom lived to be 98 and it was a serious fall that took her at my parents house.... and Dad will be 95 and he's happy as a clam now living in Assisted Living where he feels very safe, he hated the house in his later years but Mom refused to move, refused to allow in caregivers, and refused to allow in cleaning people. Because of their refusals, I was only the errand person and their wheels, but after 7 years I became physically/mentally exhausted. My parents would have outlived me if I was hands-on 24 hours a day.
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And since your dad is a vet, there is a program that has benefits for your mom as well. Get with the Area Agency on Aging.
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Katie, welcome. Are you looking for a Gerontologist? Your folks sound like they are needing a doc specialized in elderly issues. Check out Senior Care of Colorado and Rocky Mountain Senior Care. There are others, those are the two I know off the top of my head. Some of them will even come to the home. Call the Program for All Inclusive Care for the Elderly (PACE). Call Social Services for help. Or try your Agency on Aging, in Colorado they are often within the Council of Governments.
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Katiekate, have you considered consulting a sleep specialist?
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My work will be there for me anytime I return. That is because I work with thoroughbred horses, It is rather nomadic work. Moving with the racing season, NC was a bit unusual ... I was working at a center for horses out of training. Usually I am at one race track or another. (There is no thoroughbred racing in Colorado).

I have no concern about having a job whenever I return. Horsemanship doesn't become obsolete with lack of use.

Anyway, my plan is to keep them for the 3 years in their home. By the end of that time, I believe they will likely have passed...or be so far gone it won't matter to them any more. But, after reading here...I think I will seek over night care for once a month...maybe set up two nights in a row and take a weekend off each month. It would probably not make that much difference in the household budget.

So..to that end, I need to figure out how to get the doctors to take the issues seriously and offer real treatments...not just. "Wait and see if it gets better". Like this issue with sleeping.
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Your parents would much prefer continuing to live in their own house. Who wouldn't? But as you've figured out, they will not be able to afford that for very long. Once they have spent down their funds they will be eligible for Medicaid, and that would cover some care in their own home. BUT ... in most states Medicaid wants to use the most cost-effective way to provide the care, and that is likely (in your parents' circumstances) to be in a care center of some kind.

You don't think you'll be able to find suitable work in CO. Have you considered moving your parents to a care center in NC so you can resume your work and visit them and advocate for them?

What your parents want and what they can afford are two different things. Alas, that is not at all uncommon! You need to help them come up with some viable solutions.

And, of course, you don't want to be in this situation when you are 90, so it is important that you build up your SS record and continue saving for your own care. No matter how generous your instincts, you do need to look after yourself.

If you do consider moving them to NC, do so before you need to start the Medicaid application process. Although it is a federal program, it is run by states and the approval does not transfer between states.
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8 hours a day times 7 days a week, times 4.5 weeks in a month, times $30 per hour ($25 plus $5 shift differential) is $7,560 a month. This would spend down their savings to a level they could not afford in just 13 months. This would leave them with insufficient assets to continue even at this current level (drugs are costing them nearly $800 per month above their income). At about 12 months they would have to move into a much cheaper place (worse neighborhood, etc) because they wouldn't have the ability to keep paying rent.

Since I can expect them to probably live another 3 -5 years.. this is not a plan that works.
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I've looked at a nursing home for Mom. The first issue is that Mom is in complete horror of the very idea. She saw her own Mom in a nursing home and the awful care she got.

Second, the resources would be quickly spent (their home care policy pays nothing for nursing home care) After doing the math...it would leave my Dad unable to function at home..and require him also to be put in a home.

Both have expressed the desire to be "put down" before being put away. They both saw first hand what nursing home care is like.

While I am here..I am living in their home, but I could not remain here. My work is not available to me here...I would have to return to the east coast and get a job. This would mean no one to be visiting them and be sure of their care. I know only too well what happens to those who have no family ensuring the nursing home isn't just negligting their loved ones...even with constant visits it is a struggle to get good care out of them for Medicaid patients.
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Katiekate, I can understand your frustration, desperation, and burnout. It is the situation itself and your parents' impairments that make this so hard. I hope you will find doctors you will be more comfortable with. But that won't change the fact that your parents each need 24-hour care (=48 hours care) and they are not getting 8 hours of outside help cannot provide the other 40 hours PER DAY yourself!

If they have "too much" income and/or assets to be eligible for financial help, can they use those funds to supplement the 8 hours from their insurance?

Please don't put all your hope in finding a new doctor. That might be a good thing, but it really isn't going to remove the need for more care than you can humanly provide.
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