caregiver burnout

[Adirondackgal]

I help take care of things for my mom and dad. They are both in their 80s, in poor health, but still living home. I have to set up all of mom's medication, but she forgets to take it because of dementia issues. Dad is close to having dialysis, with end-stage renal disease. He has been hospitalized at least once a month for the last year. Mom has been in the hospital this month also. I am just getting so stressed out. I am just wondering if anyone here has been through this and if you get outside help? I have a sister that works full-time and she helps when she can. I have a brother who lives right around the corner but does not visit them much. I also have a sister who lives in Florida, so that is too far away for her as mom and dad live in the northeast. I take care of my GS all day, help out my parents whenever they need me, which could be several times a day, and I also have a medical transcription job where I work from home in the evenings. I love mom and dad very much and we don't want them to go into a nursing home, but we need some help. Any suggestions? Thanks in advance for your help

[Pony]

If you're going to maintain your parents in the home, it is critical that you get help.

I encourage you to look into what benefits they have through their insurance plans, and anything that your community may have available.

This may come down to simple practicality. You are raising a grandchild, running over to your parents' numerous times a day, AND trying to work a job.

Sooner or later, you're going to crash and burn. At that point, you won't be any good to anyone - including yourself.

The sad fact is, caring for your parents is going to become more and more demanding as time goes on.

I'd start by calling the senior services coordinator (or whatever title they use) in your community/county. There are people who can guide you through the maze of finding the help you need to make sure your parents get the best possible care, whether that is in the home or in a care facility.

[Vahomesteaders]

You have o seek some help. Medicare or insurance will cover some. We took care of my mother and father. Still take care of my dad. He has MS and is chair bound. My mom had a stroke and was parylized. She also had a feeding tube and trachea. No nursing home would take her because she was so bad off. We had no choice but to bring her home and care for her. It was the hardest thing my wife and I ever did. It changed our lives forever. She had to quite her job of 14 years as bank manager and I had to really cut back my hours and turn down some work I really could have used. We ran on a couple hours of sleep at night for 6 months. She needed to be turned or changed every couple hours. It was very hard on us Infact she passed away lat halloween from another stroke and we still havent completely recovered. But we realied so much on the kindsness of others and finaly in her last month we got help from insurance for a part time care giver. You will burn out if you dont find some help no matter how small it is. It will affect your entire lifr. It will affect your health as well while dealing with the stress. You have to take care of yourself and them and find a good balance. MAny churches have some programs to help. Check all your resources. Hoping the best for you.

[TerriLynn]

I have several sets of aunts/uncles that have poor health and increasingly I am hearing of "in home nursing services" being used as an alternative to nursing home care.

How I understand it a nurse comes once a day, or just several times a week. Checks on things such as meds, nutrition, blood sugar, blood pressure, and home safety issues such as bathroom (raised toilet heights, and safety bars in showers) no throw rugs, because that can cause tripping, etc. They also help with bathing as well. One aunt had a nurse that would even do a couple of loads of laundry while she was there, "because, I'm here anyway and its really no trouble" she was great!

I don't think it was through Hospice but some social service agency, in each case the in home care started after a hospital stay and was initiated by someone at the hospital.

Financially I think that they are finally figuring out that its cheaper to keep someone in their own home as long as they can, even with nursing support, than it is to institutionalize them in nursing homes. Also more and more I am seeing that nursing homes are fulfilling the role of rehabilitation, and physical therapy, instead of just housing someone until the end of their life.

Maybe a day of making a few phone calls and asking the right questions may get you the help you need, and it may end up costing very little, or nothing.

[Terri]

Home health care? For my MIL it cost $50 for a half day, I paid it out of my MIL's account, and the aid checked the meds and took MIL to the grocery store. Would something like that give you a day off once a week? Or could your sibling in Florida help with the expenses for one day a week so you can stay home one day a week??

I did not even realize that I WAS burning out until I was fried.

[Michael W. Smith]

You are going to have to ask for help. It sounds like it's time to call a family meeting between you and your siblings - include the Florida sister by phone.

You need to explain all the extra care your parents are requiring and you can't do it all.

You will soon see how reliable your siblings are if they try to provide excuses on why they can't.

And don't let them bully you because you don't have a "job". (Some people don't understand that having a job at home requires you to be home - and you can't have interruptions.

Try to set up a schedule where the siblings with their free time can come in and do the things you have been doing. If you are the one helping your parents during the day, then another sibling needs to do the evenings and weekends.

If the siblings are "too busy" or "not able to" remind them that these are THEIR parents as well and if you don't get help, that leaves two options.

Option 1. Having to hire outside help. This will mean if your parents have any money at all - your siblings are acknowledging that they would rather have someone else "do the dirty work" and they will take a smaller inheritence.

Option 2. Having to put them in a nursing home. This will mean if your parents have any money at all - your siblings are acknowledging that would rather have the nursing home "do the dirty work" and they will most likely get NOTHING in an inheritence. Nursing home care costs $3000.00 and up on a monthly basis.

I certainly don't want to sound like money is the most important thing here - it isn't - your parents health and ability to remain at home is what is most important - but some people will only do something when they are reminded that the amount of their possible future inheritence will depend on their actions now.

And if your siblings can't give help, then you will have to check around the community.

Even finding someone to come in a couple times a week to check on them and make sure medicine is being received will help you not be so burned out. But realize you CAN'T do it by yourself!!

[Wolf mom]

Former case manager here. Yes, you do need assistance.

Call your local Area Agency on Aging. Depending upon funding, they have housekeepers and maybe more important to you, respite care. No nurses so they won't help with meds.

Call the Alzheimer's Association and try to go to a couple (at least) meetings. They have a wealth of information and may set your mind at ease with alternatives.

Call your local Hospice. They are paid for by medicare and can assist with nurses and trained volunteers.

There's also Senior Companions. The local one just lost it's grant funding - dunno about the rest of the country. They are low income volunteers that get paid a stipend and mileage to take clients shopping, to Dr's appointments and also do respite care.

Depending upon income, Please, think about assisted living. There are places with not only "apartments" so your folks can live together, but also memory units. They will be cared for 24/7. I know many here think that's the worst thing, but after talking to many adult children, it, in the long run, was the best for all.

Remember, the first person a caregiver has to take care of is the caregiver or there will eventually be no care giving.

My best to you. PM me if you want to discuss more.

[DW]

but you need to start calling and it might take many calls. In every state (and county) it is called something different. My mother was in IA and I in Colo. but every year I went for at least a couple weeks. My brother, who lived in IA, always said that was his vacation. I was thinking about the sister that lived out of state.

[Pony]

Originally Posted by Wolf mom

Former case manager here. Yes, you do need assistance.

Call your local Area Agency on Aging. Depending upon funding, they have housekeepers and maybe more important to you, respite care. No nurses so they won't help with meds.

Call the Alzheimer's Association and try to go to a couple (at least) meetings. They have a wealth of information and may set your mind at ease with alternatives.

Call your local Hospice. They are paid for by medicare and can assist with nurses and trained volunteers.

There's also Senior Companions. The local one just lost it's grant funding - dunno about the rest of the country. They are low income volunteers that get paid a stipend and mileage to take clients shopping, to Dr's appointments and also do respite care.

Depending upon income, Please, think about assisted living. There are places with not only "apartments" so your folks can live together, but also memory units. They will be cared for 24/7. I know many here think that's the worst thing, but after talking to many adult children, it, in the long run, was the best for all.

Remember, the first person a caregiver has to take care of is the caregiver or there will eventually be no care giving.

My best to you. PM me if you want to discuss more.

Yes, This!

Very well put, Wolf Mom, especially about assisted living. There are some fine facilities. They aren't all necessarily fancy, but there are homey, caring places. Sometimes, it's safest for the folks and best for the family caregivers.

[DragonFlyFarm]

First off let me say I'm sorry. It sucks being in your situation...it's frustrating, exhausting and heartbreaking. I know this because I take care of my post stroke father, one of three children but apparently dad is my responsibility. Does the hospital assign your parents a caseworker when they are admitted? If so, schedule a meeting with them. My fathers caseworker was a wealth of information, both for possible avenues of support for my father as well as support for myself. You need help, you cannot do this alone. Hugs to you

[Phil V.]

You're not alone. I've been taking care of my 91 yr. mother basically by myself. She has had a couple of mini strokes that affected her short term memory. I live with her full time since my dad passed several years ago. I have 3 sisters and a brother. My brother quit talking to us over a year ago and 2 of my sisters live 45 minutes away and the other about 5 minutes. Two of them work up to 12 hrs. a day.

[ginny63]

Dear caregiver, It cannot be done...When I took early retirement 17 years ago the company I worked for sponsored seminars on how best to make your money last and have the best retirement possible. One thing they suggested was to have nursing home insurance, we did that. But our dear insurance man did not put in inflation provision in our policy. It only pays $60 a day. Care homes here run $4800+ per month. My husband was diagnosed with Alzheimer about 8 years ago. The first 5 years were manageable, but now it is not. He sees people, hears noises, wets depends, drops food, can't dial phone etc etc. Have to cut up his food, peel anything with a peeling. Finally told his doctors, I needed help, they contacted a home health care company. Some of the people are excellent some are not. They have a huge turnover.
My daughter stops in 3-4 nights a week on her way home from work, she will help me dump feed, or anything I need done in a few minutes. She and her 1/2 brother(my husband's son) have had a fallen out because the son is never here to do anything. They are not speaking.
Our Vet, (busiest lady I know) will call on a Sun afternoon and say I am coming over, get dressed and go to town, take a break.
If your dad has to go on dialysis that will take 3-4 hours a day, 3 days a week. Your Mother's memory problems are only going to get worse. I thought I could do it, because I didn't want to lose everything we had worked for, but nursing home care gets closer everyday. Be good to yourself.

[light rain]

If the meds are organized in daily pill containers by the adult child ahead of time, depending on state law, some non medical personnel could remind them to take them. Again, this varies from state to state.

I hope you get to speak with someone in aging to guide you to explore all the options. Please try to take care of yourself too.

[light rain]

No one has mentioned the option of VA nursing homes. I know there are concerns with the recent news programs but my husband thinks highly of the care he gets at the VA. And after having spent 20 some days at a private rehab facility after surgery he said he would go to the VA in the future if he needed rehab.

Just a side note. It is true that home care workers vary in performance just like in any other profession. Part of the problem is low pay, lack of training and the stress of the job. Unfortunately I don't see that improving in the future.

[Adirondackgal]

Thank you everyone for the information. I struggle with Dad because he can still drive and if he has a nurse come in and check on him he won't be able to drive anymore. He refuses that. They both refuse to go into assisted living. They are old school in that they built their house themselves and they are not going to leave it. They do not have long-term care either. They are so stubborn. You are right, everyone else in my family has a "real job" except for my sister who lives in Florida. She basically lives off them. At least once a month she calls for money and they won't say no. She hasn't seen them in two years but is coming up in September. I am sure she will be going through the house to see what she can get. Her daughter has moved up from Florida to go to college in the fall. She doesn't want to live with her dad and his girlfriend so she told mom and dad she will be living with them on and off. She doesn't have a job so mom and dad will be supporting her too. Mom and Dad expect her to help do what I am doing. I do not think it is a wise decision. This girl is 19 and not ready for this. Even though I feel she should contribute because she is staying there, I don't think she should have that burden. They are very difficult. The hard part for me is talking to mom and dad about this. You must not upset the applecart. They expect us to do all this for them. They do not have a lot of money, but dad is very tight with every penny. Thanks again everyone for letting me vent. I appreciate more than you know.

[Michael W. Smith]

Less than 5 1/2 years ago, my wife's parents lived by themselves at their house. Mother-in-Law was already diagnosed with early memory problems.

After Father-in-Law had surgery, he became very frail - even after the 21 day of rehab in a nursing home. Even though he went into the hospital before surgery walking on his own 2 feet - the rehab unit said "We are done, he is all ready to go home." He was sitting in a wheelchair!

We tried telling them - "He doesn't use a wheel chair. Their house is not handicap accessible. He walked before this." - it didn't help "We are done, he is all ready to go home."

Not surprisingly, within 2 weeks of going home, he had fallen several times and we knew something had to be done. We quickly looked at paying somebody to come and fix meals, check on them, etc. You figure you will pay someone $10.00 / hour for 7 hours - that is $70.00. That didn't even help with the other 14 hours of the day.

There was no way he could move in with us - a 2 story house with bathroom only on the 2nd floor. He was put in an assisted living facility and MIL came to live with us. He died 2 years later - and MIL is still living with us.

When she first came - she washed dishes and helped out where she could. The 5 years has taken it's toll on her memory. Today, she can't wash dishes anymore. The dishwashing turned into a job of using cold water, no soap, and her hand as a wash rag. We have had 2 or 3 over flowed sinks and it's currently to the point now, where we can't really leave her by herself at all.

We will continue to care for her as long as we can - as long as she is able to get up the stairs where the bathroom and bedrooms are - and for an 87 year old, she does good. Her body is healthy, her mind is weak.

I really don't know how much longer we can continue though. Within the past 2 weeks, we have had several bathroom "accidents" - either she forgets to pull her pants down, or leaves the lid to the toilet down!

It's very, VERY frustrating having to repeat the same thing over and over again within 2 minutes of each other.

You need to stop the flow of money going to Florida. Their money should be used for THEIR care.

[KentuckyDreamer]

After eighteen months of 24/7 care in my home, my 99 year old grandmother died in April. I lost my mind and did not know it until yesterday, more than three months after she died.

Before we had hospice I tried to do it all myself...it is not the physical work, it is the emotional. No one could prepare for that. I finally broke down an aide, 8 to 10 hours a day for five days a week. If I went through an agency they started at $25 an hour. I found private aides for $15.

I found a wonderful yahoo.com support group that let me vent, ask for help, cry, whatever. They were life savers, no judgments.

I am so sorry for what you are going through.

[kasilofhome]

Originally Posted by Adirondackgal

I help take care of things for my mom and dad. They are both in their 80s, in poor health, but still living home. I have to set up all of mom's medication, but she forgets to take it because of dementia issues. Dad is close to having dialysis, with end-stage renal disease. He has been hospitalized at least once a month for the last year. Mom has been in the hospital this month also. I am just getting so stressed out. I am just wondering if anyone here has been through this and if you get outside help? I have a sister that works full-time and she helps when she can. I have a brother who lives right around the corner but does not visit them much. I also have a sister who lives in Florida, so that is too far away for her as mom and dad live in the northeast. I take care of my GS all day, help out my parents whenever they need me, which could be several times a day, and I also have a medical transcription job where I work from home in the evenings. I love mom and dad very much and we don't want them to go into a nursing home, but we need some help. Any suggestions? Thanks in advance for your help

Ok sis in Fla knows how alarms clocks Work, she could be in charge of med call reminders..it would get her involved and get her up to speed with what you are dealing with daily.

Get sis involved and reach out to bro. Once sis gets involved she might be able it aid you with your bro. He is closer there might be a reason he is not pulling on the burden.

[PNP Katahdins]

A serious crisis will eventually happen. One parent will be hospitalized and have to go to a care facility instead of back home. Ask me how I know this. They won't have as many options as they do now.

Mom went to a good facility and fortunately was able to afford it; too bad my brother didn't send in that last long-term care insurance premium. Said they never received the notice. Just like he didn't pay the phone bill so I had trouble contacting them. Haven't seen him since she died and don't mind one bit.

Peg

[JoePa]

Boy - when you read about people getting old and having all those physical and mental problems it seems that often times we live too long - it's a blessing to go fast and not have to linger on and on - half the time not even knowing what's going on - I just hope when my time comes up that it's a quickie - like a heart attack or maybe a lightning strike - it sure ain't fun getting old - what's the sense hanging around when you can't enjoy life anymore

I take care of my 42 year old daughter who needs someone around all the time - won't go into detail but I'll tell you its a 24/7 job - I do have other children that help out when I need a break but I try to limit the times I need to do that because they have there own families to take care of - I take one day at a time - the fact that she lives with me makes it somewhat easier because I'm with her all the time - so far the Lord has been good to me by giving me good health - it seems everybody has some problem - if they don't - its just around the corner -