caregiver burnout

There's a clock by MedCenter called "Take your Pills" It has various functions other than a regular clock among them it says "take your pills" in a mechanical voice and can be set for various times in one day. That along with a medi-set may be all she needs at this time.

Check out the various assistive devices like porta potties, kept downstairs, Michael Smith. That may help with the accidents otherwise it's adult pull-ups.

Lots of sites online.

Sometimes when parents have deep seated beliefs about what they want and what family should do, it's better to have other people outside the family talk to them like their doctor or pastor or ... someone they respect and trust.
The worst is when they won't listen and like what was said, a crisis happens. As their caregiver, you have to understand that it was NOT your fault and not guilt yourself.

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Only she who attempts the absurd can achieve the impossible

Talk to their doctor, he should be able to offer options that are covered by their insurance. When my daughter was a nursing student she worked for a home care service, would be assigned clients to visit 2-3 times a week, to bath, clean, laundry, give rides to appointments and go pick up food for them.
Now as a nurse she is a home care & hospice nurse in a very rural area, including a few Amish patients. She brings them meds & supplies, checks their vitals, wound dressing, supports/train the family caregivers and follows up with their doctor as needed. This is through the hospital she works for and covered by insurance.
Please have a conversation with their doctor and take some of the burden off your shoulders with programs that are available for this type of situation.
Bless you & take care.

My heart sure goes out to you!

I take care of my 88 year old mom. Moved in with her in 2006 so that she didn't have to go to a nursing home. She's really in pretty good shape for her age but would not be able to live alone. For me the hard part is handling her anxiety attacks. Meds do not work for her. I can usually get her calmed down. She never used to have them but after her last stroke, they became harder for her to control.

I just can't stand to see her scared. She is such a sweet, lovely woman. It breaks my heart when she is scared.

I know my situation is not near as difficult as other people's. My sister does help a lot. She is here every day since I work full time. I have a brother who will take her to doctor's appointments. Compared to other people I am blessed, indeed.

Any way you look at it, you are juggling a LOT and you need some help. Gotta take care of you or there will not be anyone to take care of all those other people depending on you. ((((hugs))))

I am very simply touched by your struggle. Been there... Done that. It is very hard to do...and harder not to do.

I can tell you a couple of things we've done. taken care of two grandmothers, grandfather and mother before they died. this is just what I think is personally useful, it may or may not fit for you.

I had relatives who were totally capable of helping but chose not to. then critiscized the bejeezus out of a lot I did/did not do. that alone was very difficult to deal with and didn't even have anything to do with meeting the ill relatives needs. super frustrating. I was preggo having my kids during these years too. last relative died with the baby of the five turned one. so I feel for you trying to manage a little one, too.

as far as coping with the exhaustion...I had a few good friends i'd call when I needed to cry and vent. they always told me that if I needed something to let them know and they would figure out helping me. I only called a couple times over the years. but, just knowing they would be there if I collapsed really mentally helped me hang in there. it was exhausting, I lost weight, lost sleep and had to just accept there were things in everyday life that we just weren't going to be part of outside out house...not everything, but lots of stuff.

I dealt with 5-6 care facilities. all but one was a disaster. the one I liked was a home in my neighborhood that was converted to a care residential care facitily. not actually any pricier than a regular nursing home, not that they are cheap. but, my grandfather had enough money to cover it, so he got to be there for a few months.

find a doctor that YOU really like for your parents. don't give up. you need one that is on the same page as you. I encountered several doctors during various hospital trips that I didn't get along with. I don't think they're very used to having patients that have a relative that is power of attorney be very involved in decisions and keeping up with the care plans. but, I had a great nurse practitioner (again with my grandfather) for his primary care and she was always an ally/asset. wish i'd had that with the others.

find a hospice provider (in home preferably) and insist....I repeat insist that your parents be evaluated as soon as you have the slightest notion that they could be approaching that point or that they have any condition that is eventually terminal. there is a mental test (can't remember name now) that is used for dementia/Alzheimer patients. it is given routinely at check-ups if you have a good dr's office. the first score is the baseline. it's just a question and answer, like a conversation. the patient gets a score each time and the score is related to helping them gauge what stage the patient is in currently.

have the hospice evaluation done by a hospice doctor. twice I've had regular facilities/doctors tell me that my mother and grandfather were no where near hospice stage. they were very nasty to me about it. both relatives wanted to go home regardless, they hated living not at home. I brought them both home, had the hospice doctors come in and was told they both would have been eligible to receive hospice care long (LONG) before I had actually gotten them seen. also, I was told that hospice is not just for 6 months or less like what most people think. if they are eligible for hospice, they don't stop being eligible if they "haven't died in time". the hospice doctors can renew the care indefinitely as long as they are only receiving palliative care. that means that they are given care to not be in pain, but not to try and cure them.

a hospice company can also send you caregivers. you can hire whatever you want/can afford. just a nurse's assistant for once a week up to 24 hours a day. they also have rn's and dr's on call for you 24 hrs a day once they are the assigned dr. I had times when I had to call cause I didn't know what to do. sometimes they just helped over the phone. but, they also could come over even in the middle of the night to evaluate, bring meds, etc.

if you can make arrangements through a hospice or local senior area to help relieve you of the burden of bathing/housekeeping and at least some meals, I think that would help. but, get ready for a time when you might be needed 24 hours a day for a length of time you can't predict. that way if it happens you won't feel quite so deer in the headlights about it.

on a positive note, I hated to suffering my relative's experienced from their illnesses and the hospital/nursing home drama and family (not relatives in my household) drama that happened. but, I wouldn't change the experience of going through it with them for the world. I didn't get to finish college cause of it. my mom got sick and died and then the relatives she'd cared for became my inheritance. a lady told me once it must just be my calling from God. I said, I don't think so, but i'm fairly certain it's my assignment from Him. The years we spent doing it made my household get really close and tight knit. it also gave my kids the real life experience of being extremely close and caring deeply about their older relatives. they all learned to accept and value them through their illnesses and not see the limitations of what they/we as a family could do together through it as burdensome.

i'm so grateful they had that time with them and learned that lesson. caring for a sick/aging relative can be very burdensome sometimes. but, I think it's mentally harder to challenge because people don't accept it as normal. they don't understand it was a part of life for generations and it's only recently that families in many cultures began living such separate lives in so many separate places/households. it doesn't help having government/corporations creating an entire industry to just "do it for us" for care for the elderly, like they're trying to do public schooling for kids all the way down to when they're babies with programs like head start, does not help create and environment where people accept that family caregivers for the elderly are normal, needed, and necessary either. it's so ironic how everybody is all about how life just has to change when a new helpless life--a young baby--is born. people do meal trains offer to babysit, buy useful gifts. offer support and understanding and appreciation for you efforts. but, we as a society don't offer much like that to the caregivers of the elderly, or that much interest and appreciate directly to the elderly. I say ironic, because honestly babies don't know who everyone is or have thoughts to share or anywhere close to the mental facilities of the elderly. even the ones with dementia/alzheimers, cause i'll tell ya, they don't have their wits about them all the time, but it's sad that they don't often have the ones they love with them when they are having a few good hours to visit.

I hope you get through it. just don't give up. if something isn't working, try something else. don't be afraid to make changes when something isn't right, or isn't working anymore. best of luck. I hope your household can make many joyful memories together during this time, even though they won't all be joyful moments.

ps. if you're stressed. try valerian root. $3.96 for a bottle of 100 at Walmart. says you can take up to 3 a day on the bottle. found it years ago. boy, is it a lifesaver. it doesn't make me drowsy, but it totally gets me chilled out (lowers anxiety) if i'm having a rough day. I just take as needed. wish i'd had it when I went through all the hospice stuff

two of my kids have some medical/special needs. never let the doctors give them any of the "typical" medications recommended. didn't trust that to be a safe choice/best for my kids, especially because they're my kids who are growing (including brain development).

but, twice I went in and said I needed something so I didn't feel so crazy and stressed dealing with them. both times they put me on wellbutrin, which I took out of sheer desperation for some relief. found valerian on my own later. quit the rx meds. the valerian works better and it's all natural (NO BIG PHARMA--yeah!)

I swear valerian and homeschooling saved my family from more heartache and my kids are thriving now. seriously don't think it would have played that way with rx meds and public school expectations..LOL.

[QUOTE=You need to stop the flow of money going to Florida. Their money should be used for THEIR care.[/QUOTE]

AMEN to that!

I feel your pain. I take care of my mother who is an end stage COPD patient. Fortunately, she lives with my aunt. However, she is older than my mom and has her own health issues. My sister is in Maine, but she pays a lady to wash mom's laundry. My aunt and my sister split the cost of paying a housekeeper to come in once a week. Both of those things are much more helpful than they sound. I am still over there everyday and this summer has been a bear. We have been in the hospital more since May than we have been out. Today marks the first full week that Mom will have been at home. I take care of all mom's medical needs, cook them a good meal each day, grocery shop, etc. etc. Burnout is definitely something I know a lot about. It doesn't help that I am having my own health issues right now. But lets just say that after living in the hospital this summer I went to a really dark place mentally and physically just collapsed. That is when the rest of the family decided I needed help. Don't just tell them that you need help, tell them what they need to do to help. Sending hugs your way because I know how terribly awful this burden is. Blessings, Kat

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Your county may have an office as well. Since your are in the Adks, may be less offered than closer to a city in NYS. Is there insurance? Dad's paid for home-health visits, including in-home hospice. That at least took the difficult things like bathing off the plate for us. Is there any possibility of moving right in, and taking care of your GS in that location? It wouldn't really be more work for you since you wouldn't have the driving to do, and could monitor the medications. Bless you, this is about as a difficult a time as there is, imo.