2 years of round the clock caregiving for my sweet mom has me exhausted. I’m sure I’m not alone . My finances are drained. I just applied for Medicaid today.
Yes, I understand how you feel. I am exhausted after looking after my 92 y.o father 24/7 apart from a 30 min carer once a day. The main problem these days is getting him to take fluids and eat more than a few mouthfuls of food. Everything is exhausting for him and he huffs and puffs from the difficulty he has with getting food/drink down him. For the last 10 or so he has hardly been drinking at all and his urine is quite dark. I know the next stage will be that he’ll contract a UTI but I just can’t get him to drink more than a sip and I feel like I am torturing him by asking him to drink. Very frustrating.
From your profile: "I am a full time caretaker for my elderly mother. She is my full time job. I recieve no reimbursement for this. She is disabled and requires 24/7 care. I have not been able to work outside of the home ( her home) in over 2 years. I have no health insurance and just applied for Medicaid today. I’m praying I am accepted. My mother has tricare and medicare and is on a fixed income. I’m exhausted and I am 59 years old."
How did you come to be in this awful situation? Did you work up until 2 years ago? Did you live with her before that?
YES .... exhausted even though I seem to do less and less physically. I am tired all the time, crabby most of the time and even though I have /take 3-4 hr for myself after Dad goes to bed I don't FEEL like I have any alone time. And of course I feel guilty for the way I feel as well as for letting/having my daughter help out as she has her plate full with stressful work and family. I coordinated my mom & dad's in home care for a number of years which was mostly frustrating as they were in a rural area and no agencies so had to look for trustworthy helpers and learn the hard way. Then my daughter moved in with them to take care of them while she did online college. That helped my peace of min but I still feel guilty as was VERY stressful for her. Finally even that was not enough so I moved them to the city where I lived and my sister & I plus in home help worked quite well for 2 yr until my mom passed. Even in the city though it was difficult to get the care WE NEEDED. Unfortunately, we did not qualify for medicaid and since my parents had been teachers they were not "well off". After my mom passed in 2016 my dad came to live with me. He is now 98 yr old. He does a minimally adequate job of self care hygiene; but he does not realize he does not realize or remember; and I can't leave him alone even to go to basement or outdoors. He is in wheelchair and can pedal around the house but can't manage the ramp or outdoors. My sister and brother are clueless. They think all is fine (& imply it's just me when I voice frustrations). They verbalize wanting to help but never follow through with anything. My brother has a history of taking financial advantage so we put finances in my daughter's care. Twice Dad went to stay the weekend with him and both times care back with infections. My sister lives out of state so difficult to access (plus I am concerned re her competence). Neither send cards or presents to him like they did when my mom was alive. Dad just had 98th birthday and I sent out an email of ideas for presents & long distance contact. No one sent even a card. They call occasionally (every couple weeks). They deny his memory loss and confusion so when they do talk I am frustrated with things he tells them that make it sound like I am neglecting him (don't remember he ate..he eats more than I do 3 meals and 2-3 snacks/day; haven't been out of house ...or dragging him out 'all the time', etc).
My daughter tries to be sure he pays for things but i still feel like I spend a lot of my own retirement for his care and can't afford things I need. SOooo, thanks for the opportunity to vent. I'm sorry it's a bleak picture. Part of the frustration is not enjoying him as much as I'd like. I used to love his 'stories'.
My advice is to nip it in the bud before it gets worse for you. Find a way to get help. AND thank you for helping me put it into script so I can start shoveling out.
Has anyone else ever read the amount of time that people post on this forum and relate it to a prison sentence? I have. I saw two years from the poster and while that is a long time, my first thought was, ‘Wow, only two years. I did 15 years!’
Actually, it’s all relative. It doesn’t matter if it’s a few days, a month, a year or many years, if the time spent with family members becomes extremely disruptive in our lives.
Yes, we all have experienced burn out. Hopefully, most people will find a way out of the burden of full time caregiving.
I sincerely hope that you will get your life back soon.
I posted elsewhere in the forums that I have a grant to pay for respite care. I heard of an agency that awarded grants for respite care. I called them and I was interviewed over the phone and was accepted to receive respite care from April through September. A caregiver comes twice a week to sit with my wife while I go do whatever. I’m billed once a month by the agency. I pay that and send my receipts to the grant agency. They then reimburse me.
This caregiver support agency’s caregivers will do light household chores such as dusting, make beds, wash clothe, fix meals, wash dishes, give showers. They can call 9-1-1 should my wife fall.
Check with the Alzheimer’s Assoc. or your local Council on Aging. They should be able to direct you to an agency that can help you see if you qualify for financial help for a caregiver.
After reading through my post before sending it I sure do seem to like that word “agency”, don’t I? Lol
I honestly had to chuckle to myself at your question, as any caregiver that has been caring for someone for any length of time, has definitely experienced "burnout." It happens to the best of us. The key however to keeping burnout at bay, is to make sure that you're taking care of yourself on a regular basis, by spending time with friends, exercising, going to church, or just sitting outside on your patio enjoying the scenery. It doesn't have to be anything big, but it must be something. I was a caregiver for my husband for many, many years, and I too had to learn that the hard way, after becoming very burned out. I'm glad you've applied for Medicaid. Hopefully that is for your mom, and you can get her placed in the appropriate facility if needed. Also you should NEVER spend your own money on your moms care. You need your money for yourself, and your needs. Mom should be spending her own money for her care. Her care is not worth risking your own health over, so please make sure you're taking care of you. I hope in time you will find rest, and more importantly your joy again. God bless you.
The main problem these days is getting him to take fluids and eat more than a few mouthfuls of food. Everything is exhausting for him and he huffs and puffs from the difficulty he has with getting food/drink down him. For the last 10 or so he has hardly been drinking at all and his urine is quite dark. I know the next stage will be that he’ll contract a UTI but I just can’t get him to drink more than a sip and I feel like I am torturing him by asking him to drink.
Very frustrating.
How did you come to be in this awful situation? Did you work up until 2 years ago? Did you live with her before that?
Do you have siblings?
I coordinated my mom & dad's in home care for a number of years which was mostly frustrating as they were in a rural area and no agencies so had to look for trustworthy helpers and learn the hard way. Then my daughter moved in with them to take care of them while she did online college. That helped my peace of min but I still feel guilty as was VERY stressful for her. Finally even that was not enough so I moved them to the city where I lived and my sister & I plus in home help worked quite well for 2 yr until my mom passed. Even in the city though it was difficult to get the care WE NEEDED. Unfortunately, we did not qualify for medicaid and since my parents had been teachers they were not "well off".
After my mom passed in 2016 my dad came to live with me. He is now 98 yr old. He does a minimally adequate job of self care hygiene; but he does not realize he does not realize or remember; and I can't leave him alone even to go to basement or outdoors. He is in wheelchair and can pedal around the house but can't manage the ramp or outdoors.
My sister and brother are clueless. They think all is fine (& imply it's just me when I voice frustrations). They verbalize wanting to help but never follow through with anything. My brother has a history of taking financial advantage so we put finances in my daughter's care. Twice Dad went to stay the weekend with him and both times care back with infections. My sister lives out of state so difficult to access (plus I am concerned re her competence). Neither send cards or presents to him like they did when my mom was alive. Dad just had 98th birthday and I sent out an email of ideas for presents & long distance contact. No one sent even a card. They call occasionally (every couple weeks). They deny his memory loss and confusion so when they do talk I am frustrated with things he tells them that make it sound like I am neglecting him (don't remember he ate..he eats more than I do 3 meals and 2-3 snacks/day; haven't been out of house ...or dragging him out 'all the time', etc).
My daughter tries to be sure he pays for things but i still feel like I spend a lot of my own retirement for his care and can't afford things I need.
SOooo, thanks for the opportunity to vent. I'm sorry it's a bleak picture. Part of the frustration is not enjoying him as much as I'd like. I used to love his 'stories'.
My advice is to nip it in the bud before it gets worse for you. Find a way to get help. AND thank you for helping me put it into script so I can start shoveling out.
Actually, it’s all relative. It doesn’t matter if it’s a few days, a month, a year or many years, if the time spent with family members becomes extremely disruptive in our lives.
Yes, we all have experienced burn out. Hopefully, most people will find a way out of the burden of full time caregiving.
I sincerely hope that you will get your life back soon.
Big hug
This caregiver support agency’s caregivers will do light household chores such as dusting, make beds, wash clothe, fix meals, wash dishes, give showers. They can call 9-1-1 should my wife fall.
Check with the Alzheimer’s Assoc. or your local Council on Aging. They should be able to direct you to an agency that can help you see if you qualify for financial help for a caregiver.
After reading through my post before sending it I sure do seem to like that word “agency”, don’t I? Lol
God bless and keep us up-dated, ok?
Does your mom still have money? If so, she should be paying her way. It's sad that your finances are drained.
Is your mom going into a facility? If not, I hope you get some help before your health gives out.
The key however to keeping burnout at bay, is to make sure that you're taking care of yourself on a regular basis, by spending time with friends, exercising, going to church, or just sitting outside on your patio enjoying the scenery. It doesn't have to be anything big, but it must be something.
I was a caregiver for my husband for many, many years, and I too had to learn that the hard way, after becoming very burned out.
I'm glad you've applied for Medicaid. Hopefully that is for your mom, and you can get her placed in the appropriate facility if needed. Also you should NEVER spend your own money on your moms care. You need your money for yourself, and your needs. Mom should be spending her own money for her care. Her care is not worth risking your own health over, so please make sure you're taking care of you.
I hope in time you will find rest, and more importantly your joy again. God bless you.