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I have been doing this for 5 years now on top of taking care of my own dad who has a brain tumor and no one helps me or will relieve me for a while to spend time to myself not even my husband.
You notify each adult family member that you are quitting the caregiver jobs effective October 1. They will be moved to nursing homes unless every family member bellies up to the bar to take on a fair share of this effort.
Then...do it
My parents were the sole caregivers for my Grandma...for 9 years. The burden was terrible for them. Finally...they called a family pow-wow. Everyone showed up, but only to try to shame my parents! Well..when the final week came and it was clear it wasn't just a threat, only then did the share of her care get parceled out. With each taking Grandma for 3 months at a time in rotation. You can be sure, as long as everyone thought they had full time free care they would do nothing.
You are an easy solution for everyone. And it's not even your own father. KatieKate is right. Put your foot down. Let the family figure out how to take of their blood relative.
"no one helps me or will relieve me for a while to spend time to myself not even my husband"
Hm, that doesn't say anything good about your marriage. It is impossible to really understand your situation with the little bit of information you have given us here; is your marriage worth saving? Do you have kids, if so what are their thoughts? Do you care for both of them in your own home? How old are you and hubs?
The simplest (not necessarily easiest) solution is to put yourself and your needs first. For some reason everyone has begun to see the role as caregiver as your only role, not considering your desires/needs to be wife, mother, employee, friend and all the other things that make you feel whole. Plan your escape; book an extended holiday, inform everyone of the date you will be gone, and go. Family (or you if you are feeling merciful) can either arrange respite care - thus setting a new precedent - or step up to fill your (very large) shoes. While you are removed from the situation you will be better able to see the forest for the trees and to decide if you are willing or able to return, and what changes need to be made if you do.
Dont the men u are caring for have medicare if so chk the adult day care out or a aide on each men to come and sit with them..how in the world did u get chosen to do this since there must be other siblings involved? Have you informed them of this ? If not thy must had just dropped these 2 men off on you .
First, if one or more is receiving Medicaid, not Medicare...I would check to see if your state does Medicaid Waivers. This is where the state pays you for taking care of a loved one rather than a nursing home. It kept me from putting my mother in a home and paid me. If that not the case, I would have a family meeting and each member on both sides, pony up $50-$100 a month. Next Walmart has a Tend Camera which I love. It has dual audio and I can in "real time" watch my mother on my cell while I am doing errands. Use the extra funds to treat yourself out at least once a week and pay for an aide to "babysit" while you are gone. If no one likes it, then consider a nursing home. Keep in mind your decision won't please everyone so just make sure you are happy.
Check out Lynn's Light on Facebook. The short answer is get hospice on board (one doctor referral); hospice will come to the house; and request "respite." It is a way for hospice to take your father for a multiple day break. If you have problems in your community completing this; leave me a message and I will assist. Putting your foot down doesn't get you prompt help.
It sounds to me like it may be time to use his money to hire in-home healthcare. If this isn't possible, I would be calling APS and letting them know you're struggling with this and you need help but no one else is helping. I don't know if this particular person really needs as much care as he's getting or not, but if he needs a higher level of care it's time to turn for help or consider putting him into a facility
Many people are responding with answers that are good but the care may cost money that isn't available. I agree with Katiekate. The family needs to meet. Invite them for a dinner, BBQ, party without a point ( no birthdays, etc.). If the family knows what the meeting is about, some may not come. Then, after they've eaten, give them the run down, an ending date and tell them that the next day after your deadline you and your dad are going on a bucket list trip. Hopefully your dad can travel, even if it's to the next town. No one needs to know where you're going, including your husband. You probably have a cell phone so he can reach you. Just say it's a road trip. Then leave as you said. Don't prepare meals for while you're gone. If the deadline passes and you don't leave, life will go on as it has these last five years. If there are complaints you're going to spend money on yourself, tell them it's back pay for the last five years.
Getting some time alone with your dad is important while you still have him. If he can't travel, go somewhere on your own any way. Visit friends or family who live out of town or even out of state. Plan to sleep the first day away. (My mom always complains that I sleep the first day I'm visiting.) By going away it forces the situation onto the family. There may be family who think you are happy doing this. Obviously they have blinders on.
Remember, the caregiver needs to give to the caregiver first, so that they have something to give to their loved one. Good luck!
I feel your pain! I am in the same situation but there are no siblings to call on. Hospice has been a life saver for us. My husband works more than full time and helps when he can. We are looking for a place for FIL and hope to place him by November. STAND UP for yourself. Life is too short to allow yourself to be used up, burned out and angry. Unresolved anger hardens into bitterness. Take care of you.... wishing you the best!!
I wish you all the luck in the world with a family meeting. Just...don't expect things to change much. IN my family, of 5 available sibs, 3 are MIA, no amount of pow-wows or meetings can unstick them from their routine. Our family is irreparably fractured from my trying and failing to get the rest of the sibs to help.
IF they agree to help--jump on it. Have in place schedules and such. If they don't, then it's time to consider outside help as other posters have suggested.
And DO NOT let anyone make you feel 'guilty' for standing up for your right to have a life.
Omg dbrooks! I REALLY feel for you. Billsliz brings up a good point that you have limited time to spend with your own precious Dad. You probably stepped in to help f-i-l with a big, generous heart but now you are being taken advantage of. I'd be tempted to fake my own death and escape. It's just SO HARD!! I swear I'm not mentally unbalanced but during my Mom's horrendous journey sometimes I just wanted to die or be incarcerated to get a break. Some treated me like "you made your bed now lie in it" because I just couldn't put her in a facility the first 3 years. We are all on your side. Your life, happiness and health matter.
My MIL lived with us after I retired. She had lived with us in the past while hubby and I both worked and things had gone fairly well. But, after retirement, when I got up early to take hubby to the train and then had to pick him up at night so we could get away with having 1 car, things took on a different aspect. MIL had become dependent enough that I made her breakfast, lunch, and dinner. Having lived in assisted living she had become accustomed to having a different menu every day - not leftovers. She was accustomed to events and entertainment and doing as she pleased. Her care certainly wasn't difficult physically, but mentally and emotionally it was a challenge. The small things added up. She needed to eat by 5 or 5:30 but I didn't pick up hubby from the train until 6 (or much later if it was delayed). Mom wanted to eat with her son - her son wanted her to eat earlier. I could take her to the Senior Center but each time there was a problem of some sort, or she said people spoke harshly to her or she had lunch there and it made her sick. She was lactose intolerant but would drink milk if it was on her tray and then say "but why would they give me something that made me sick?" rather than taking responsibility for just not drinking the milk. Hubby was involved in a number of activities and one evening when he came home and told me that he had taken on a somewhat demanding position in one of the clubs I lost it! I cried, yelled, (MIL was asleep without her hearing aids), and generally exploded. Hubby looked so surprised. Because I had handled everything before he got home each day he just let himself assume that everything was OK. After my blowup he said that he had quite a bit of vacation coming and he would stay home for a week and take care of his mom. I asked him to just handle meals, but he said he would do meals, and her laundry, and take her to the mall where she liked to go to walk.
Day 1, morning, we heard MIL walker coming down the hall to her bathroom. That meant 30 minutes until breakfast. I began to tell hubby just how she liked breakfast but he stopped me, told me to go back to sleep or take my time getting up and dressed and he would handle the food. As soon as she got to the table the yelling began. He had made her a full single serving of hot cereal and it was too much. I'd taped directions on the box of how to make her just what she would eat, but he ignored them. She was mad that he had made too much. This behavior continued. She wanted to walk at the mall for 3 hrs. He only had 2 hrs. before he needed to pick her up. They fought. He did her laundry before her basket was full. They fought.
In a couple of days he was by my side, holding my hand, and apologizing for not understanding how demanding she had become and saying that she needed to go back to assisted living.
I take the hit for giving in to her demands, but they started as little things. "Can you make me a smaller serving of cereal so it isn't wasted?", "I don't want to waste water and electricity, so I'd like to have my laundry done (she used a special detergent due to super dry skin) only when the basket is full", and the like. I did these things so that hubby didn't get an earful from her when he got home such as "_________ fussed at me today", or similar.
We think we are doing a great thing at first. We can handle this, handle that, make this exception to our daily life, and then it builds, and we look back and no one else is helping because we have been so wonderfully accommodating and in the process have lost our own tranquility, perspective, and ability to ask for help.
OK - so what do you do. First, before that family meeting, for several days, write down everything that you do for FIL, and that you need to do for your own dad. What can others do? If you frequently go to a pharmacy or store for his needs and meds that is something another person could do. Does he create a lot of laundry? Bag it and someone else picks it up and does it. Can you leave him alone for a few hours? If not, schedule others to come and stay and tend to him while you do what ever you want to do - getting back in touch with friends is great, or joining a caregiver support group. In my opinion, if you have a list of things you can tick off where you need specific assistance, it is more difficult for others to say no. And while you are at it, make it clear that your own father needs help and you need to provide it. FIL's family need to take care of their own.
Some good initial ideas and suggestions. I like what toriej did with hubby! Until hubby or siblings *really* get a good taste of what it takes, they think you are on easy street! All well and good, however without some specifics, it is difficult to make meaningful suggestions.
Questions for the poster, dbrooks: 1. Are there other adult children of FIL? 2. Do you have siblings? 3. What is FIL condition and needs (dementia, physical limitations, etc) 4. You say dad has brain tumor, but same question - what are his needs? 5. Do they both live with you and hubby or in their own homes?
Depending on each man's level of needs/care and location, the help needed and divided or placement can be better determined.
I cannot swear that what the nurse who initially interviewed our mom said is true (she was from a nursing aide company, making assessment of need), but she did tell us that if mom had been willing to accept personal help (such as bathing), Medicare would cover the cost of the aides. She refused, so we paid from her account but let her think it was Medicare. Lasted only a few months until she refused to let them in. :-( I suspect it WAS Medicare because mom was living in her own condo, alone, and the nurse did NOT ask anything about the home ownership or assets, which Medicaid *would* take into account. You could make inquiries about this; IF either or both dads need help with ADLs (activities of daily living), you might be able to get some help paid for. Getting aides in to help will take a lot off your hands. The amount of time they will cover may be limited, we never got that far with mom, but ANY help is great, especially if it is covered by Medicare!
Again, there are a lot of other factors to take into account before meaningful suggestions can be formulated. Can you provide the information in the list above to us? In the meantime, an honest discussion with at least hubby is in order. Assumption (personally I try to avoid assuming anything, but you also do not provide the info) are you retired and/or a homemaker only or are you also working? Does hubby have ANY free time? He could and SHOULD be providing some respite for you - it IS his father. Even on the weekend would be great - let you rest or get out to do something YOU like, or take dad out for a fun day. ANY help he can provide would be welcome, but with 2 older men who need help, one person cannot do it all. Ask him - If you kill yourself doing this, or just plain say I quit, who will take over??? Ask him that!!
My mother's generation did take care of the parents (granddad died earlier), taking turns keeping them, just nana later, but she was not really high need. She was probably mid-upper 70s when she passed on, no dementia that I recall. When my brothers heard the first memory care quote (8K), they were all about I'll take her in... I said that is noble, however it is NOT like nana - mom will be much more care/needs and it will get worse. You understand and still want to do this, go ahead. It is wonderful if families can provide that care without burn-out, but it is not easy, and in many cases it is a thankless job.
Another question not listed above - do either of you or anyone else have DPOA and medical directives for them? If not, you should look into this. Your dad should likely be okay to sign documents (but with a brain tumor, don't wait!) We do not know what FIL needs your help for - if dementia, it depends on how far into it he is. If the attorney is satisfied that he understands what he is signing, it can be done. If not... Also, it does NOT have to be you and/or hubby that get assigned these if there are other siblings who are willing/able to take this on (not really a lot of work per se, just a responsibility and it empowers whoever when the need arises.)
Waiting to hear back from you! Meanwhile, take care, we are thinking of you and hoping for improvement, especially if we can help!
Personally, I would notify everyone you are taking a holiday, tell them the dates, ( go for more than a weekend to give the the full flavor of caregiving), give them the list of what needs to be done and tell them you will be having a meeting to discuss ongoing caregiving when you return because you will not be doing it. Of course you will be doing your share, but not to shoulder 100% of the care. Be sure to leave and not cry wolf. All will survive. Give them enough notice to make it feasible but not too much to back out or give them a chance to back out. Best of luck.
Dbrooks, you have received solid advice. The one thing I would impress upon you would be: whatever you decide to do be firm. You only get one chance to get their attention and acceptance that you mean it and they will have to change their ways. If you give in even a little they will try to leave it all to you.
Tell your husband and his siblings that you must take care of your dad so you need them to step up and take care of their dad. You are able to take care of FIL "X" amount of time (three days a week or whatever works for you). And they either need to step into the caregiver role of hire someone. If FIL lives with you, leave the house that day before your husband leaves, just in case your replacement does not show. You are going to have to be strategic in not allowing them to place you back into the caregiver roll when it is not your designated time. Be kind but firm and do not bend on the schedule until everyone has proven they can be depended upon step up and help.
I wish you luck. Remember; no one can walk all over us without our permission. We give our permission when we do not require others to treat us as we deserve to be treated. You have been very generous for years, but it is time to require their respect for what you have done for FIL and respect for your needs as an individual.
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You notify each adult family member that you are quitting the caregiver jobs effective October 1. They will be moved to nursing homes unless every family member bellies up to the bar to take on a fair share of this effort.
Then...do it
My parents were the sole caregivers for my Grandma...for 9 years. The burden was terrible for them. Finally...they called a family pow-wow. Everyone showed up, but only to try to shame my parents! Well..when the final week came and it was clear it wasn't just a threat, only then did the share of her care get parceled out. With each taking Grandma for 3 months at a time in rotation. You can be sure, as long as everyone thought they had full time free care they would do nothing.
Hm, that doesn't say anything good about your marriage. It is impossible to really understand your situation with the little bit of information you have given us here; is your marriage worth saving? Do you have kids, if so what are their thoughts? Do you care for both of them in your own home? How old are you and hubs?
The simplest (not necessarily easiest) solution is to put yourself and your needs first. For some reason everyone has begun to see the role as caregiver as your only role, not considering your desires/needs to be wife, mother, employee, friend and all the other things that make you feel whole. Plan your escape; book an extended holiday, inform everyone of the date you will be gone, and go. Family (or you if you are feeling merciful) can either arrange respite care - thus setting a new precedent - or step up to fill your (very large) shoes. While you are removed from the situation you will be better able to see the forest for the trees and to decide if you are willing or able to return, and what changes need to be made if you do.
Getting some time alone with your dad is important while you still have him. If he can't travel, go somewhere on your own any way. Visit friends or family who live out of town or even out of state. Plan to sleep the first day away. (My mom always complains that I sleep the first day I'm visiting.) By going away it forces the situation onto the family. There may be family who think you are happy doing this. Obviously they have blinders on.
Remember, the caregiver needs to give to the caregiver first, so that they have something to give to their loved one. Good luck!
IF they agree to help--jump on it. Have in place schedules and such. If they don't, then it's time to consider outside help as other posters have suggested.
And DO NOT let anyone make you feel 'guilty' for standing up for your right to have a life.
Day 1, morning, we heard MIL walker coming down the hall to her bathroom. That meant 30 minutes until breakfast. I began to tell hubby just how she liked breakfast but he stopped me, told me to go back to sleep or take my time getting up and dressed and he would handle the food. As soon as she got to the table the yelling began. He had made her a full single serving of hot cereal and it was too much. I'd taped directions on the box of how to make her just what she would eat, but he ignored them. She was mad that he had made too much. This behavior continued. She wanted to walk at the mall for 3 hrs. He only had 2 hrs. before he needed to pick her up. They fought. He did her laundry before her basket was full. They fought.
In a couple of days he was by my side, holding my hand, and apologizing for not understanding how demanding she had become and saying that she needed to go back to assisted living.
I take the hit for giving in to her demands, but they started as little things. "Can you make me a smaller serving of cereal so it isn't wasted?", "I don't want to waste water and electricity, so I'd like to have my laundry done (she used a special detergent due to super dry skin) only when the basket is full", and the like. I did these things so that hubby didn't get an earful from her when he got home such as "_________ fussed at me today", or similar.
We think we are doing a great thing at first. We can handle this, handle that, make this exception to our daily life, and then it builds, and we look back and no one else is helping because we have been so wonderfully accommodating and in the process have lost our own tranquility, perspective, and ability to ask for help.
OK - so what do you do. First, before that family meeting, for several days, write down everything that you do for FIL, and that you need to do for your own dad. What can others do? If you frequently go to a pharmacy or store for his needs and meds that is something another person could do. Does he create a lot of laundry? Bag it and someone else picks it up and does it. Can you leave him alone for a few hours? If not, schedule others to come and stay and tend to him while you do what ever you want to do - getting back in touch with friends is great, or joining a caregiver support group. In my opinion, if you have a list of things you can tick off where you need specific assistance, it is more difficult for others to say no. And while you are at it, make it clear that your own father needs help and you need to provide it. FIL's family need to take care of their own.
All well and good, however without some specifics, it is difficult to make meaningful suggestions.
Questions for the poster, dbrooks:
1. Are there other adult children of FIL?
2. Do you have siblings?
3. What is FIL condition and needs (dementia, physical limitations, etc)
4. You say dad has brain tumor, but same question - what are his needs?
5. Do they both live with you and hubby or in their own homes?
Depending on each man's level of needs/care and location, the help needed and divided or placement can be better determined.
I cannot swear that what the nurse who initially interviewed our mom said is true (she was from a nursing aide company, making assessment of need), but she did tell us that if mom had been willing to accept personal help (such as bathing), Medicare would cover the cost of the aides. She refused, so we paid from her account but let her think it was Medicare. Lasted only a few months until she refused to let them in. :-( I suspect it WAS Medicare because mom was living in her own condo, alone, and the nurse did NOT ask anything about the home ownership or assets, which Medicaid *would* take into account. You could make inquiries about this; IF either or both dads need help with ADLs (activities of daily living), you might be able to get some help paid for. Getting aides in to help will take a lot off your hands. The amount of time they will cover may be limited, we never got that far with mom, but ANY help is great, especially if it is covered by Medicare!
Again, there are a lot of other factors to take into account before meaningful suggestions can be formulated. Can you provide the information in the list above to us? In the meantime, an honest discussion with at least hubby is in order. Assumption (personally I try to avoid assuming anything, but you also do not provide the info) are you retired and/or a homemaker only or are you also working? Does hubby have ANY free time? He could and SHOULD be providing some respite for you - it IS his father. Even on the weekend would be great - let you rest or get out to do something YOU like, or take dad out for a fun day. ANY help he can provide would be welcome, but with 2 older men who need help, one person cannot do it all.
Ask him - If you kill yourself doing this, or just plain say I quit, who will take over??? Ask him that!!
My mother's generation did take care of the parents (granddad died earlier), taking turns keeping them, just nana later, but she was not really high need. She was probably mid-upper 70s when she passed on, no dementia that I recall. When my brothers heard the first memory care quote (8K), they were all about I'll take her in... I said that is noble, however it is NOT like nana - mom will be much more care/needs and it will get worse. You understand and still want to do this, go ahead. It is wonderful if families can provide that care without burn-out, but it is not easy, and in many cases it is a thankless job.
Another question not listed above - do either of you or anyone else have DPOA and medical directives for them? If not, you should look into this. Your dad should likely be okay to sign documents (but with a brain tumor, don't wait!) We do not know what FIL needs your help for - if dementia, it depends on how far into it he is. If the attorney is satisfied that he understands what he is signing, it can be done. If not... Also, it does NOT have to be you and/or hubby that get assigned these if there are other siblings who are willing/able to take this on (not really a lot of work per se, just a responsibility and it empowers whoever when the need arises.)
Waiting to hear back from you! Meanwhile, take care, we are thinking of you and hoping for improvement, especially if we can help!
Tell your husband and his siblings that you must take care of your dad so you need them to step up and take care of their dad. You are able to take care of FIL "X" amount of time (three days a week or whatever works for you). And they either need to step into the caregiver role of hire someone. If FIL lives with you, leave the house that day before your husband leaves, just in case your replacement does not show. You are going to have to be strategic in not allowing them to place you back into the caregiver roll when it is not your designated time. Be kind but firm and do not bend on the schedule until everyone has proven they can be depended upon step up and help.
I wish you luck. Remember; no one can walk all over us without our permission. We give our permission when we do not require others to treat us as we deserve to be treated. You have been very generous for years, but it is time to require their respect for what you have done for FIL and respect for your needs as an individual.