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I'm going to post here what you have in your profile because it's helpful info:
"I’ve been taking care of my Dad, and his home, more and more each year and it’s become too much for me to handle. My Dad’s hospitalization in Feb., 2021 due to a UTI led to a rehab stay, contraction of MRSA in a toe (due to poor circulation in leg), a failed attempt at an angiogram, a leg bypass and amputation of a toe (on his 88th birthday). He has MDS, stage 4 CKD, benign essential tremors and arthritis, with gout flare ups. With Covid, it’s been difficult to see him much and he has become very frustrated and takes that frustration out on me. He has been in either the hosp or rehab for 6 months now (he was in assisted living for 4 days and then back in the hospital with cellulitis). He was to go home this week, but I had to keep him in rehab for another few days because I discovered a termite infestation in the kitchen of his home. More stress for this HSP. Now my Dad doesn’t believe that there’s termites in his house and he’s gotten meaner. He thinks that we’re delaying his return home. I have always done what I could for my Dad…grocery shopping, banking, haircuts, dr appointments, etc. His home is at least a 30 drive away and It’s time to have some help and home care for him, but he thinks he can just go home by himself."
I'm not sure what "quiz" you're referring to, but no matter -- you are juggling flaming balls and are starting to catch fire. One of the most difficult things to come to grips with as we attempt to help our aging parents in decline is that we have to prioritize people/relationships and identify our boundaries. We can't make everyone and everything #1. Your husband and your marriage is priority #1. If you burnout, who will then take care of your dad? Your husband? So he inherits a burned out wife and very ill FIL? Yikes.
Your dad is not being reasonable in his expectations so you must stop trying to meet them. Has your dad ever had a cognitive or memory test to see where he's at? If not, this may be helpful to you, so you can understand that his "wants" and "needs" don't align with the reality and options at hand.
Another helpful (but bittersweet) thing I've had to internalize is that for some problems there will just be no perfect, or great, or even good solutions. You can't continue to make both your marriage and your dad #1. This means (some or all of) your dad's care will need to come from another source or look different. He won't like it. You won't feel "good" about it at first, but it is the only way to keep the #1 priority in its proper place. You will still love your dad. He will still be cared for. His care will just be different than what you both had envisioned to this point. Change is hard. Aging and decline is hard. But the caregiving arrangement has to work for both parties: the giver and receiver -- and in your case it's not working. Therefore something needs to change and you are the one to decide what.
What do you do about your burnout? You work on having revised expectations for your dad's care, know clear boundaries that protect yourself and your marriage, and accept change. May you gain much clarity, wisdom and peace in your heart.
Thank you for the advice! The quiz I am referring to was one I found here on this website. My results are what got me to join. My Dad will have a cognitive evaluation and be seen by a geriatric psychiatrist. In the meantime, I am having his house treated for termites and then handling the repairs. I haven’t talked to my Dad for 4 days now. It’s the longest stretch without contact. I am the only person who calls him daily. My brothers would call on “special occasions”. I called my oldest brother and explained what was going on and had him call our Dad. My Dad didn’t pick up that first day, but did on Wednesday. My brother said he was calmer and then he explained about the termites. My Dad still doesn’t believe that they’re in his house. He believes it’s an excuse that my husband and I came up with to keep him from going home. It’s been hard for me to get past how my Dad spoke to my husband. He hurt him with the things he said - so much so that my husband doesn’t want to have anything to do with him. This, of course, makes me feel even more alone and without help with things that need to be done. I think that an apology from my Dad will make a big difference to my husband. Thank you again.
Most of us here don't need to take a "quiz" to figure out that we're burned out. And burnout is burnout, no matter to what degree. What that tells you is that you now need to make some long overdue changes in your role as a caregiver, as you've obviously taken on more than you can handle. It honestly sounds like your father needs to be placed in the appropriate facility where he will receive the 24/7 care he needs and you can get back to just being his daughter, as you are now at the point that you must not only do what's best for your father but for you as well. No where is it written that children must take on the care of their parents as they age. And when it starts to take a toll on the child, then changes must be made, or you will end up being in the statistics where the caregiver dies before the one being cared for. Talk to the social worker at the rehab facility today to find out what your options are at this point. I wish you and your father the very best.
What your Dad wants and what he needs are two different things. Someone at Rehab needs to tell him he is now 24/7 care and needs to be in an AL. Then you need to tell him his care is more than you can handle.
I have found that our parents seem to forget what it was like to raise kids, keep a house and work a full-time job. All they see is they need help and it should be family giving it. Bet Dad never took care of his parents.
You are correct. My Dad’s parents passed in their mid-60’s. He didn’t have to take care of his parents. My Mom lost her battle with colon cancer in 1994, but insisted she go to hospice care. My Dad did help with his mother-in-law’s care, but she had a live in aide and he would handle her bills and groceries once a week. Pretty different situation going on now. Thank you for your reply.
I am taking care of my mom by myself. So familiar with your situation. The state of Florida has a senior services department. Sure whatever state u r in does too. Call them. What each state provides is mostly like a little different. For a small copay based on your dad's ss amount. I pay 38.00 a month and for that I get... 1case of diapers a month, wipes, hair/body wash, hand sanitizer and glucerna drinks. I also get 20 hours of in home care giver. Due to pandemic I get 30 hours right now. Wealthy area, cheap county. Plus I get 2-3 weeks of respite a year. She just came back from one. A nice lockdown facility takes her for 2 weeks and I get a well needed break while she has full staff taking care of her. She had an eye infection and uti. They have Dr who takes care of it all. One less issue for me is always welcome. Look for these services in your county and u will eventually get much need break and relief.🤞🙂
Thank you. I will look into these services. I have a cousin who can help me enroll in a food program here in NY so that he can have meals delivered to his home.
It sounds like Dad needs to become a resident of Assisted Living.
One of the things that prevents burnout is making sure that the task is doable. Running 2 households without help isn't.
If you don't have help coming in, then Dad needs a placement. Caregiving is a two way street--it has to work for both parties.
Can you get dad seen by a geriatric psychiatrist? Irritability is often a symptom of depression. Getting that treated might lead to more pleasant interactions between you.
I was a caretaker for my parents through many of the same illnesses. I was also the youngest and my siblings and their adult children (and families (even local ones)) did not participate in my parents’ care. They almost never visited.
it is understandable for you to feel anxious because his coming home is a huge transition after being in a hospital and rehab for so long.
If his level of anger/unrest is not consistent with his younger personality, seek out a psychiatrist (a geriatric specialist is even better). Your dad may benefit from a light antidepressant to help him weather all this transition.
I’m actually surprised that the hospital wants to send him home - in the case of my parents’ I was strongly encouraged/pushed toward nursing homes so many times that I began to feel like there must have been a huge kickback scheme. (I also think that there was an “oxygen subscription & wheelchair at discharge scam” for one of the hospitals, but we were able to work through that and wean mom off the oxygen and get her out of the wheelchair every time. Discharge from other hospitals did not include those “accessories” or instructions).
We (my parents and I) chose a different path from the nursing home recommendations, which worked very well for us.
If he is able to be part of the choosing process, he will feel more content with the choice. Let him be heard and feel valued. My parents had to make huge sacrifices and they were glad they were part of the decision making process.
My parents stayed in their house as long as possible. Once they could no longer live independently due to a significant medical change, I took care of them personally, but needed help from CNAs to manage.
My parents had lived too far away from my house to continue living in their own home while receiving my care, so they chose to first move into my home and then eventually moved into a nearby (non-senior) apartment.
The licensed CNAs we hired were wonderful. I found them through “job wanted” listings. They would step in, where and when needed. I covered as many hours as I could (the bulk of the hours) while maintaining my family also (I had young children at home at the time). In retrospect, this was an excellent experience for my kids. My kids and my parents spent a lot of quality time together. My kids had to make sacrifices too and they was good for them.
My parents had enough resources to pay for the cost of the CNAs. I did not accept compensation for my caregiving, and fortunately was in a position where that was possible.
This is a difficult job that deserves compensation, though. I could not both work in my career and provide caretaking during that time - but caretaking was my choice and so was this arrangement.
There were plenty of hard times, but this set up worked best for us. My parents felt independent. My dad passed away and so for many of the years my mom was a widow. There were stretches with no caretaker coverage and fir that time I managed solo.
The CNAs would usually tackle some of the more “personal” tasks, such as showering.
I know you feel overwhelmed, but remember you have many choices. Do what works best for you and your dad. There are no wrong answers.
My parents are no longer here. The time we had together was short and very precious.
Thank you for the reply. I talked to my Dad’s dr in the current rehab facility and she said that she would have a geriatric psychiatrist talk to my Dad. He will also have a cognitive test, as well. I had him talk to a psychiatrist before his leg bypass and toe amputation and it helped. I am currently in the process of making calls and finding a suitable home care service for his return home.
In addition to finding someone to provide hands-on care for Dad, you need to find ways to cope with the stress, in the moment and in a longer term. My father had vascular dementia which transformed his personality. Dad was raised in a neglectful and abusive home but made very different choices in his life. I was 14-years-old before I heard a cuss word spoken in his house, and then it was my mother who said it. His vascular dementia left Dad speaking more from the "record" recorded in the home he grew up with - a cuss word or three in every sentence and extremely cruel in some of his language. My mother was his primary caregiver for almost 2 decades and was very strong and able to cope with his actions pretty well, but eventually, it got to her too. I helped Mom but realized when her health began to fail that I could not cope with my Dad's (now) abusive language on a daily basis. I realized Dad was not going to be "happy" wherever he was and whoever was providing his hands-on care. I placed my Dad in a memory care facility which he eventually became somewhat accepting of.
You need a "minute" break routine to lower your stress in the moment. For me, taking a few deep breaths and taking a cup of coffee onto the porch, enjoying the yard was a good technique. A longer break was a day or two at a local hotel with a whirlpool tub, just sleeping until I woke, with no expectations from others, reading a good book, and walking to nearby restaurants and shops. You have to find a way that works for you. When you turn the hands-on care over to others, maybe you can have your brother answer the phone for at least a couple of days at a time. The always on call, like when caring for children, seemed to be the most stressful component for me in the long term. I cared for my mother in my home as she gently aged and became mildly less cognitive and less mobile. Having someone come in and look after Mom for a few hours so I could attend the kids' ballgames and enjoy a dinner with friends were major components of allowing my life to continue as I came to care for someone who could not be left alone for more than a few minutes. You have to take care of yourself too so you will be able to care for your loved one. Do not accept guilt for their aging and health issues, that's beyond your control. Advocate for the best possible outcome for everyone - you and them - and accept some sad things will be part of this "process" of aging and dying. May you find God's comfort in this journey.
You have some great suggestions and advice from a lot of people who have "walked the walk". I was caregiver for my Mom after her stroke at 88 and have also been a Dir. of Admissions at a facility and hold a cert if in Asst Living Admin in NJ so I just want to address of few more items. Do don't mention finances but in no case should you use your funds to pay for Dad's care in a facility or at home. If he can't afford either service, you can apply for Medicaid (lots of options there now) in his state of residence. If he is a vet, please contact the local Veterans Administration as they may be able to offer financial assistance and give you resources for home health care options. I know Dad wants to go home and be independent - he is understandably angry and afraid and unfortunately "they always hurt the ones they love" so expect him to be unbelieveably brutal. Having him talk to a therapist as you are doing may help. You may also want to develop a contingency plan in case the home health option starts to fail his needs. This means you will need to begin to research long term care facilities that are within a reasonable distance from you because he will need an on-site advocate in the best of facilities. If he can learn to walk or be transported in a wheelchair, he might be able to go to the AL but for the most part, they a private facilities and can set their rules about which needs they can and cannot meet. With the staffing shortages in the entire healthcare industry, many AL's can really only handle people who are fairly independent in terms of transport and feeding. If money is not currently an issue you can usually get a better AL as a private pay but try to find one that will guarantee him a Medicaid bed when he runs out of funds and get that guarantee written into your contract. AL's in NJ (and possbily NY) has very limited Medicaid bed availabilty; some don't even take Medicaid and because don't get federal funds through Medicare, they don't have to accept it. Also, be aware that Medicaid by law pays for "shared" accomodations; it an AL let's a Medicaid resident have a private room.............. tip toe quietly as it's a gift! The exception to the shared accommodations would be something like one of the Parker Homes or some of the larger Continuing Care Retirement Communities (CCRC) like a few of the Masonic Homes which only have single rooms. Regardless of the room status..... remember- care and staff requirements are the first priority in ALs and NHs.
It's time to make some changes. So sorry you dad is doing so poorly. But while he is in rehab is the golden opportunity for change to happen.
What do you think his short and long term situation will look like? What will he be able to do for himself? What are you freely willing to provide while you can still have a life and a marriage and not feel so burnt out?
You are going to have to set boundaries and do it ASAP. If you think it is at all reasonable for him to come home, fine. But you MUST set up home care services. Don't ask him, just do it. 99% of the time they say no. Too bad. He does not get to decide how you spend your time - you do.
If you think coming home will be a complete disaster, then do not let it happen. He can be mad and think you made up the termite thing, whatever. This is about his care and safety and about your sanity. You have to put yourself first a little bit here. Sure, consider dad but really, what about you?? Don't you deserve to have a good life too?
Your dad is lashing out and may have undiagnosed cognitive issues. So please tell hubby not to be so upset about your dad being rude/mean to him. It's likely to be part of your future dealing with your dad and if his brain is broken, he really can't be held responsible for treating people poorly. Sorry hubby is upset. Mine has been a rock. I don't know what I would do if my mom lashed out at him and he took it personally. Well, what I would do is what I just told you. Have a talk with him about having more realistic expectations and not to let the poor behavior get personal.
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"I’ve been taking care of my Dad, and his home, more and more each year and it’s become too much for me to handle. My Dad’s hospitalization in Feb., 2021 due to a UTI led to a rehab stay, contraction of MRSA in a toe (due to poor circulation in leg), a failed attempt at an angiogram, a leg bypass and amputation of a toe (on his 88th birthday). He has MDS, stage 4 CKD, benign essential tremors and arthritis, with gout flare ups. With Covid, it’s been difficult to see him much and he has become very frustrated and takes that frustration out on me. He has been in either the hosp or rehab for 6 months now (he was in assisted living for 4 days and then back in the hospital with cellulitis). He was to go home this week, but I had to keep him in rehab for another few days because I discovered a termite infestation in the kitchen of his home. More stress for this HSP. Now my Dad doesn’t believe that there’s termites in his house and he’s gotten meaner. He thinks that we’re delaying his return home.
I have always done what I could for my Dad…grocery shopping, banking, haircuts, dr appointments, etc. His home is at least a 30 drive away and It’s time to have some help and home care for him, but he thinks he can just go home by himself."
I'm not sure what "quiz" you're referring to, but no matter -- you are juggling flaming balls and are starting to catch fire. One of the most difficult things to come to grips with as we attempt to help our aging parents in decline is that we have to prioritize people/relationships and identify our boundaries. We can't make everyone and everything #1. Your husband and your marriage is priority #1. If you burnout, who will then take care of your dad? Your husband? So he inherits a burned out wife and very ill FIL? Yikes.
Your dad is not being reasonable in his expectations so you must stop trying to meet them. Has your dad ever had a cognitive or memory test to see where he's at? If not, this may be helpful to you, so you can understand that his "wants" and "needs" don't align with the reality and options at hand.
Another helpful (but bittersweet) thing I've had to internalize is that for some problems there will just be no perfect, or great, or even good solutions. You can't continue to make both your marriage and your dad #1. This means (some or all of) your dad's care will need to come from another source or look different. He won't like it. You won't feel "good" about it at first, but it is the only way to keep the #1 priority in its proper place. You will still love your dad. He will still be cared for. His care will just be different than what you both had envisioned to this point. Change is hard. Aging and decline is hard. But the caregiving arrangement has to work for both parties: the giver and receiver -- and in your case it's not working. Therefore something needs to change and you are the one to decide what.
What do you do about your burnout? You work on having revised expectations for your dad's care, know clear boundaries that protect yourself and your marriage, and accept change. May you gain much clarity, wisdom and peace in your heart.
My Dad will have a cognitive evaluation and be seen by a geriatric psychiatrist. In the meantime, I am having his house treated for termites and then handling the repairs.
I haven’t talked to my Dad for 4 days now. It’s the longest stretch without contact. I am the only person who calls him daily. My brothers would call on “special occasions”. I called my oldest brother and explained what was going on and had him call our Dad. My Dad didn’t pick up that first day, but did on Wednesday. My brother said he was calmer and then he explained about the termites. My Dad still doesn’t believe that they’re in his house. He believes it’s an excuse that my husband and I came up with to keep him from going home.
It’s been hard for me to get past how my Dad spoke to my husband. He hurt him with the things he said - so much so that my husband doesn’t want to have anything to do with him. This, of course, makes me feel even more alone and without help with things that need to be done. I think that an apology from my Dad will make a big difference to my husband.
Thank you again.
What that tells you is that you now need to make some long overdue changes in your role as a caregiver, as you've obviously taken on more than you can handle. It honestly sounds like your father needs to be placed in the appropriate facility where he will receive the 24/7 care he needs and you can get back to just being his daughter, as you are now at the point that you must not only do what's best for your father but for you as well.
No where is it written that children must take on the care of their parents as they age. And when it starts to take a toll on the child, then changes must be made, or you will end up being in the statistics where the caregiver dies before the one being cared for.
Talk to the social worker at the rehab facility today to find out what your options are at this point. I wish you and your father the very best.
I have found that our parents seem to forget what it was like to raise kids, keep a house and work a full-time job. All they see is they need help and it should be family giving it. Bet Dad never took care of his parents.
For a small copay based on your dad's ss amount. I pay 38.00 a month and for that I get...
1case of diapers a month, wipes, hair/body wash, hand sanitizer and glucerna drinks.
I also get 20 hours of in home care giver. Due to pandemic I get 30 hours right now. Wealthy area, cheap county.
Plus I get 2-3 weeks of respite a year. She just came back from one.
A nice lockdown facility takes her for 2 weeks and I get a well needed break while she has full staff taking care of her. She had an eye infection and uti. They have Dr who takes care of it all. One less issue for me is always welcome.
Look for these services in your county and u will eventually get much need break and relief.🤞🙂
It sounds like Dad needs to become a resident of Assisted Living.
One of the things that prevents burnout is making sure that the task is doable. Running 2 households without help isn't.
If you don't have help coming in, then Dad needs a placement. Caregiving is a two way street--it has to work for both parties.
Can you get dad seen by a geriatric psychiatrist? Irritability is often a symptom of depression. Getting that treated might lead to more pleasant interactions between you.
it is understandable for you to feel anxious because his coming home is a huge transition after being in a hospital and rehab for so long.
If his level of anger/unrest is not consistent with his younger personality, seek out a psychiatrist (a geriatric specialist is even better). Your dad may benefit from a light antidepressant to help him weather all this transition.
I’m actually surprised that the hospital wants to send him home - in the case of my parents’ I was strongly encouraged/pushed toward nursing homes so many times that I began to feel like there must have been a huge kickback scheme. (I also think that there was an “oxygen subscription & wheelchair at discharge scam” for one of the hospitals, but we were able to work through that and wean mom off the oxygen and get her out of the wheelchair every time. Discharge from other hospitals did not include those “accessories” or instructions).
We (my parents and I) chose a different path from the nursing home recommendations, which worked very well for us.
If he is able to be part of the choosing process, he will feel more content with the choice. Let him be heard and feel valued. My parents had to make huge sacrifices and they were glad they were part of the decision making process.
My parents stayed in their house as long as possible. Once they could no longer live independently due to a significant medical change, I took care of them personally, but needed help from CNAs to manage.
My parents had lived too far away from my house to continue living in their own home while receiving my care, so they chose to first move into my home and then eventually moved into a nearby (non-senior) apartment.
The licensed CNAs we hired were wonderful. I found them through “job wanted” listings. They would step in, where and when needed. I covered as many hours as I could (the bulk of the hours) while maintaining my family also (I had young children at home at the time). In retrospect, this was an excellent experience for my kids. My kids and my parents spent a lot of quality time together. My kids had to make sacrifices too and they was good for them.
My parents had enough resources to pay for the cost of the CNAs. I did not accept compensation for my caregiving, and fortunately was in a position where that was possible.
This is a difficult job that deserves compensation, though. I could not both work in my career and provide caretaking during that time - but caretaking was my choice and so was this arrangement.
There were plenty of hard times, but this set up worked best for us. My parents felt independent. My dad passed away and so for many of the years my mom was a widow. There were stretches with no caretaker coverage and fir that time I managed solo.
The CNAs would usually tackle some of the more “personal” tasks, such as showering.
I know you feel overwhelmed, but remember you have many choices. Do what works best for you and your dad. There are no wrong answers.
My parents are no longer here. The time we had together was short and very precious.
I am currently in the process of making calls and finding a suitable home care service for his return home.
You need a "minute" break routine to lower your stress in the moment. For me, taking a few deep breaths and taking a cup of coffee onto the porch, enjoying the yard was a good technique. A longer break was a day or two at a local hotel with a whirlpool tub, just sleeping until I woke, with no expectations from others, reading a good book, and walking to nearby restaurants and shops. You have to find a way that works for you. When you turn the hands-on care over to others, maybe you can have your brother answer the phone for at least a couple of days at a time. The always on call, like when caring for children, seemed to be the most stressful component for me in the long term. I cared for my mother in my home as she gently aged and became mildly less cognitive and less mobile. Having someone come in and look after Mom for a few hours so I could attend the kids' ballgames and enjoy a dinner with friends were major components of allowing my life to continue as I came to care for someone who could not be left alone for more than a few minutes. You have to take care of yourself too so you will be able to care for your loved one. Do not accept guilt for their aging and health issues, that's beyond your control. Advocate for the best possible outcome for everyone - you and them - and accept some sad things will be part of this "process" of aging and dying. May you find God's comfort in this journey.
You may also want to develop a contingency plan in case the home health option starts to fail his needs. This means you will need to begin to research long term care facilities that are within a reasonable distance from you because he will need an on-site advocate in the best of facilities. If he can learn to walk or be transported in a wheelchair, he might be able to go to the AL but for the most part, they a private facilities and can set their rules about which needs they can and cannot meet. With the staffing shortages in the entire healthcare industry, many AL's can really only handle people who are fairly independent in terms of transport and feeding. If money is not currently an issue you can usually get a better AL as a private pay but try to find one that will guarantee him a Medicaid bed when he runs out of funds and get that guarantee written into your contract. AL's in NJ (and possbily NY) has very limited Medicaid bed availabilty; some don't even take Medicaid and because don't get federal funds through Medicare, they don't have to accept it. Also, be aware that Medicaid by law pays for "shared" accomodations; it an AL let's a Medicaid resident have a private room.............. tip toe quietly as it's a gift! The exception to the shared accommodations would be something like one of the Parker Homes or some of the larger Continuing Care Retirement Communities (CCRC) like a few of the Masonic Homes which only have single rooms. Regardless of the room status..... remember- care and staff requirements are the first priority in ALs and NHs.
Wishing you luck and peace in this journey.
What do you think his short and long term situation will look like? What will he be able to do for himself? What are you freely willing to provide while you can still have a life and a marriage and not feel so burnt out?
You are going to have to set boundaries and do it ASAP. If you think it is at all reasonable for him to come home, fine. But you MUST set up home care services. Don't ask him, just do it. 99% of the time they say no. Too bad. He does not get to decide how you spend your time - you do.
If you think coming home will be a complete disaster, then do not let it happen. He can be mad and think you made up the termite thing, whatever. This is about his care and safety and about your sanity. You have to put yourself first a little bit here. Sure, consider dad but really, what about you?? Don't you deserve to have a good life too?
Your dad is lashing out and may have undiagnosed cognitive issues. So please tell hubby not to be so upset about your dad being rude/mean to him. It's likely to be part of your future dealing with your dad and if his brain is broken, he really can't be held responsible for treating people poorly. Sorry hubby is upset. Mine has been a rock. I don't know what I would do if my mom lashed out at him and he took it personally. Well, what I would do is what I just told you. Have a talk with him about having more realistic expectations and not to let the poor behavior get personal.
Everything will work our just fine.
I’m glad you found a geriatric psychiatrist. Mom would come out of her sessions uplifted and in a better place.
We are all here to support you.
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