My diabetic hubbie had a stroke 1 1/2 years ago and now is confined to a wheelchair and I'm exhausted taking care of him 24/7. I need ways to take care of myself before I'm completely burned out. Thanks, Dawn.
I have been there. Hubby's caregiver for 6 yrs. 24/7 with 1 week off a year when his daughter could fly down and cover for me. I kept getting worse and worse, short tempered, crying jags, sleeping off and on all night, wondering what tomorrow would bring for more agitation. He followed me wherever I went in the house and the bathroom was my only place of peace. He enjoyed going out to eat and once a day we did - the only tine he would leave the house; refusing to go out to lunch with a neighbor he used to enjoy being with yrs. ago because I wasn't along. I looked for help in hundreds of places over those years and either too expensive or not workable. A cople months ago I lost it, scaring him and myself. I became hysterical and screaming that I was going crazy, that I didn't know how to stop it and I truly felt I was losing my mind and having a breakdown. This lasted 3 hrs.! I finally had the sense to go for my Xanax and eventually got myself under control. Hubby sat practically frozen in the chair, clearly disturbed by my actions. I knew then that I HAD to do something, no ifs and or buts. I reached out to United Way and they recommended day care - again. Hubby absolutely refused to consider it, or having someone come in to sit with him at that point. And at that point I called the Center UW recomended and went with him to look at it. He had no way of knowing I was signing him up immediately. To make a long story short, he is going 2 days a week and a bus picks him up and brings him home, the service the Center recomended. It is expensive but my sanity has returned. He rants and raves every time he goes both days, telling me to "just kill me", etc. However he does fine once he gets there -- and forgets he was even there by the next day. So, it is repeated each time he goes. He can continue to carry on and accuse me of tormenting him, etc. but he is going!! He has no say in the matter now because I need to keep my own mind intact and the 2 days help me feel I am again a human being. We have to learn to ignore the manipulation and guilt; they don't realize what it is doing to us so we have to realize it ourselves. Take care of you and I wish you well.
There are things you can do to minimize the road to burnout, or to heal from burnout. To start, it is not a one time thing, it is a process of caring for yourself, as if you were not taking care of him and setting aside everything to do for him.
It can be as simple as getting your hair done, regularly. Or, going outside just when you think you will explode. Getting up an hour earlier to take a peaceful shower, getting ready for your day. Having help come in, while you just leave the house, if even to do nothing, sit in the car at a park, or get out of the car. Going to a support group. Going to the gym. Out to lunch, with yourself if you have to. Visit the animals at the shelter. Take a class that interests you.
We reverse roles & MUST decide to care for ourselves first. I had to sit my mother down & tell her that, if she fires one more person I’ve hired to help, she will simply do without for help during those assigned times. Truth is that one person cannot do it all; the elderly begin to think - like children - that the world revolves around them. Not so, and you have to be firm in your resolve!
Hi Dawn, Caregiving is an EXHAUSTING process! VERY few can give a 24/7 effort without making themself ill. So you are on the right track to recognize that some changes may be needed. Think about your husband's routine --- are there some time frames when he naps or watches TV? Those would be good time for you to take care of yourself. When he is 'ok' that is the time for you to have some me time. 'Too much to do" you might say? Well it is time to pass along some of those items to others. I have no knowledge of your financial situation, but here are some things that can be passed along: House cleaning Grocery shopping Laundry Gardening Do you have adult children? Ask for help (or accept offers you have received)
Services to look for --- Visiting Nurse Assoc (the one near me has a 'friendly visitor programs' where a volunteer comes and visit the one needed care. They also have some volunteers that do grocery shopping. Some houses of worship have such programs as well. Hire a college student (community college even) that is studying in the healthcare field. It doesn't take a lot of money to bring in a companion for your husband. AND you are taking care of YOU during that time slot. When neighbors or friends offer help, have an appropriate idea for them. I offered to help a friend with a mother-in-law that couldn't get out. It was sincere and I suggested I could run errands for the MIL. It was never accepted but it should have been. I do that stuff as a volunteer for total strangers. I REALLY would have liked to help my friend, who was still working at the time and had an ill husband. A friend of mine has a young hubby going thru Alzheimers. She goes out with the girls while the guys in their circle come and watch a game with the husband. It works out for everyone. Good luck
I can recommend a few options. First, check with your council on aging to learn what services are available for you and your husband. The one in my parents town offered two mornings a week of day care activities that culminated in lunch. They also offered a women who would come to your home, pop a chicken in the oven and have tea with shut-ins, and a once-a-month caregiver support group for example. Second, you might have a county-wide organization that can help. Mom and dad qualified for a little help with housekeeping through them plus they had a social worker for caregivers as well as nurses who could assess needs. Third, I found an agency who mom and dad could pay for hourly help. When, the helper was there, I could run errands, etc. One woman in particular really bonded with mom and dad; I had complete faith in her. She was our "go to" person. At the time, it cost $23 an hour, so we couldn't hire her as much as we would like, but it was a comfort that I knew I could call for her assistance. Once you get acquainted with these organizations, you will learn of other ways they can assist you and your husband. Sometimes, churches can help too. One in their town started up a once a month "Memory Cafe" for the elderly with interesting activities on a Saturday. That was great because most programs are usually a Monday through Friday thing. On the immediate front for you, make sure you are getting enough sleep and are eating healthy. Carve out little bits of "me time" throughout the day (sort of like being an at-home mom!) There are ways to do it. Buy a baby monitor and place the transmitter where your husband is (napping, watching tv, etc) and have the receiver with you while you nap or are in another part of your home so that you can more confidently create a little time for yourself to nap, read, garden. (Walkie talkies work similarly.) Exercise. Get an exercise bike or go for short walks (remember that walkie talkie?) Sit in the sun. The main thing is that you need to reach out to people to find out what is out there to help you and your husband. Plus, if you can improve your daily experiences at home, it can be so helpful.
I have gotten myself in almost the same position. My wife had a stroke a little over a year ago and has paralysis on her dominate side. For the 1st 4 or 5 months I thought there was a chance that she would be able to come home so I was there every day to encourage her ( Note: much of this time was spent in the hospital, so she has continuous set backs) 6 or 7 days off since October 2017.
Now she expects me there every day and if I try to take a day off she causes problems and causes me to be call into the NH to deal with it.
It is a thankless job, exhausting, and mind numbing. She is bipolar, narcissistic, and forgets everyday anything that I do for her.
I don't see how you have made it 6 years without being committed to the "nut house".
My only joy is raising my 15 YO son who make life great.
I know I need to break away from daily visits, but the consequences are almost as bad.
You might check with your local Area Agency on Aging. They may have a respite care service or be able to point you toward one. Bless you for all you are dealing with, and has off to you for knowing you must care for you too.
Assuming you have no family willing to help, there is respite care out there, including temporary care at assisted living places. I have gone through this with my husband, and eventually became very ill myself from the stress and guilt of caring for someone under impossible circumstances. I find that the socializing and care in a decent care facility is worth every penny, but barring that, find out what is offered by medicare. You may need help with this from a geriatric agency or social worker if you can't do it yourself. Do not give up on yourself!!
To start, it is not a one time thing, it is a process of caring for yourself, as if you were not taking care of him and setting aside everything to do for him.
It can be as simple as getting your hair done, regularly.
Or, going outside just when you think you will explode.
Getting up an hour earlier to take a peaceful shower, getting ready for your day.
Having help come in, while you just leave the house, if even to do nothing, sit in the car at a park, or get out of the car.
Going to a support group.
Going to the gym.
Out to lunch, with yourself if you have to.
Visit the animals at the shelter.
Take a class that interests you.
my mother down & tell her that, if she fires one more person I’ve hired to help, she will simply do without for help during those assigned times. Truth is that one person cannot do it all; the elderly begin to think - like children - that the world revolves around them. Not so, and you have to be firm in your resolve!
I have no knowledge of your financial situation, but here are some things that can be passed along:
House cleaning Grocery shopping Laundry Gardening
Do you have adult children? Ask for help (or accept offers you have received)
Services to look for --- Visiting Nurse Assoc (the one near me has a 'friendly visitor programs' where a volunteer comes and visit the one needed care. They also have some volunteers that do grocery shopping.
Some houses of worship have such programs as well.
Hire a college student (community college even) that is studying in the healthcare field. It doesn't take a lot of money to bring in a companion for your husband. AND you are taking care of YOU during that time slot. When neighbors or friends offer help, have an appropriate idea for them. I offered to help a friend with a mother-in-law that couldn't get out. It was sincere and I suggested I could run errands for the MIL. It was never accepted but it should have been. I do that stuff as a volunteer for total strangers. I REALLY would have liked to help my friend, who was still working at the time and had an ill husband.
A friend of mine has a young hubby going thru Alzheimers. She goes out with the girls while the guys in their circle come and watch a game with the husband. It works out for everyone. Good luck
Come to AgingCare.com forum to vent.
There are so many other good suggestions too, and I am hoping others can offer what they do to cope.
My wife had a stroke a little over a year ago and has paralysis on her dominate side. For the 1st 4 or 5 months I thought there was a chance that she would be able to come home so I was there every day to encourage her ( Note: much of this time was spent in the hospital, so she has continuous set backs) 6 or 7 days off since October 2017.
Now she expects me there every day and if I try to take a day off she causes problems and causes me to be call into the NH to deal with it.
It is a thankless job, exhausting, and mind numbing. She is bipolar, narcissistic, and forgets everyday anything that I do for her.
I don't see how you have made it 6 years without being committed to the "nut house".
My only joy is raising my 15 YO son who make life great.
I know I need to break away from daily visits, but the consequences are almost as bad.
Assuming you have no family willing to help, there is respite care out there, including temporary care at assisted living places. I have gone through this with my husband, and eventually became very ill myself from the stress and guilt of caring for someone under impossible circumstances. I find that the socializing and care in a decent care facility is worth every penny, but barring that, find out what is offered by medicare. You may need help with this from a geriatric agency or social worker if you can't do it yourself. Do not give up on yourself!!
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