I am an only child with a single Mom (94, lives next door to me), a MIL (89, in LTC facility 3 miles from my house), and a Aunt who helped raise me (104, living with family caregivers in FL but I'm her DPoA). We used to also have my stepFIL with Parkinson's and another Aunt who passed this January.
One can only do what one is willing and able. Hands-on, in-home caregiving has a cost, even if you "love" doing it. When a few of our senior LOs were going off the rails, I had 3 kids in school, and working full-time in a business with my husband (employees, downtown office: stressful). My family is the priority. I had to work through TONS of guilt to get to peace in my heart that I wasn't going to be able to deliver happiness to these family members. Particularly because some of them had their heads in the sand and didn't plan, wasted their money and assumed we were going to be their answer (my stepFIL and my MIL). I decided on a mental/emotional goal for myself which was to help them get the best care that finances and circumstances allowed. That's as much as we could/would do.
The experience with my in-laws brought me to the edge of burnout pretty quickly, as well as having 2 brothers-in-law out of state who couldn't help. Reality is what helped me decide how much and when I/we would help.
For some on this forum, cultural expectations of female relatives can create a lot of guilt. My Italian-American family "sacrificed" my 2 Aunts to care for their Mother (my Grandmother). They were 100% assumed into that role and they just accepted it -- they didn't even think about other options. Not long ago one of my cousins was dumbfounded to find out that none of the other Uncles or Aunts (6 of them) contributed anything financially to my 2 Aunts (as they took early retirement to care for Grandma and built a home to accommodate her living there). Graciously my cousin poured out money to them even though my Grandma was long passed.
But my own Mother knows I'm not going to be doing anything like what Grandma had -- my Mom didn't contribute anything to the caregiving of her Mother (my Grandma). So when she starts having "expectations" of my care for her I remind her that even she didn't do it for her own Mother. That always ends the discussion.
You make the break by having a thoughtfully planned discussion with the other parties (siblings, relatives) as soon as the realization occurs to you. And, bracing yourself for the reactions. The possibilities of the reactions should not deter one from making the break. People get over it eventually. But it helps if you go in with solutions. If they are viable, reasonable solutions, this is enough. You have the right to say no to any and all of it.
Who provides the care depends upon the circumstances. There are many on this forum stuck in a quandry because the LO doesn't have sufficient funds to cover increasing care needs, and often these caregivers have full-time jobs and some even have kids. There are tough decisions ahead for them...there's just no way around it.
Are you trying to come to a decision for your situation? If so, I may you gain clarity, wisdom and peace in your heart as you work through it.
If you're thinking you're "just not cut out for caregiving" then it's probably true. And the feeling can strike at any time as we go through the myriad stages of our lives. Self-doubt is a healthy mechanism to protect oneself. Sometimes there's a good reason to try to overcome it such as learning to ride a bike or going after a promotion, etc. But when it comes to something as life-altering as *longterm* caregiving, guilt is a bad reason to use to try to overcome self-doubt.
When I personally started feeling like I was not cut out for caregiving, it happened because I realized that no matter what I did for my father-in-law, the only things he cared about were staying in his 2BR/2BTH apartment in independent living and keeping both of his aides. He lied. He stalled. He threw pity parties for himself. He tried gaslighting us. He slandered my husband.
Slandering my husband was the final straw. I told my husband I was done with his dad and it was time for assisted living. I called the ALF director (same premises so I knew him), asked if studios were available, and scheduled to see them the next day. After seeing 2 available studios that were sunny, bright, and more than ample, I gave my husband a 30-day deadline after which I would be making arrangements to move back to the home we left in order to care for my now-deceased mother-in-law. FIL was moved to a studio the following month.
When I think about all the time, energy, love and thought that went into the years of both hands-on caregiving and advocating for my FIL that my husband and I both did only to be repaid with scorn and deliberate and malicious slander I feel like a fool.
When you finally decide to leave caregiving behind, move quickly. Do not dwell on self-doubt. There are many elder care services available at every price point. Do not let the perfect become the enemy of the good enough. Do not allow someone else's failure to plan for their old age to become your albatross.
There is no shame, no sin, and no guilt in wanting to give up caregiving, nor is there anything wrong or selfish with wanting your own life. What there IS is plenty of free advice out there from people who have no caregiving experience with dementia or AD telling everyone what their wifely or womanly duties are.
You should feel perfectly fine about looking into Memory Care Assisted Living for your partner now where teams of caregivers will look after him 24/7 and where he can also socialize with people his own age. Or look into other caregiving services that are available.
Remember that your partner is not the only person who matters in this equation......so do YOU!
I have said for a long time that there are people that make good caregivers and there are people that are care managers. Some can do both. If you can no longer provide safe care then you make the decision to do one of several things. 1. Hire caregivers that come into your home and do what needs to be done. In some cases all that is needed is a few days a week to give the caregiver enough of a break that they can handle the rest. 2. Supplement the caregivers with Adult Day Programs. Again this gives you a break, and it gives the care recipient a break as well. 3. The most difficult of decisions. Placement in a facility that is appropriate for the level of care that is needed. This could be AL, MC or SN (Assisted Living, Memory Care of Skilled Nursing) There is NOTHING wrong in placing someone in care. What it does mean is that their level of care has surpassed what you can do at home. It is NOT a failure on your part to care for someone it is acknowledging that you can not do it all.
If you are POA, Spouse or a Guardian the decision is completely yours and no one should make you feel "guilty".
Alz, I think that one can still be a caregiver/advocate if their loved one is being cared for in a Nursing Home or Assisted Living facility.
My mom was in Independent Living, then AL and finally a NH between 2011 and 2017. One brother (POA) and I (MPOA) and I spent countless hours visiting, advocating, handling finances, doctors and "the system".
None of us had the wherewithal or the desire to have mom live with us and she would have been lonely and anxious at home with an aide (we tried that).
So, I don't think it's a black and white situation. You're still caregiving. You're just not endangering your financial future while doing it.
My siblings and I figured this out about 5 seconds after my dad died and we had to take care of our mom.
We hired 24/7 at-home caregivers, which sort-of worked for a couple of years. After it all fell apart (home-care always falls apart), mom went to live in an AL facility. She is still there.
We knew that home care would not work, but as everybody on this site knows, we are always stuck doing home care first, because our LO's always insists on staying home.
AlzWife - Thanks for sharing more about your situation. You're probably 10-20 years younger than your 80-year-old husband who has Alzheimer's.
Your kids stuck their noses where they don't belong, guilting you into quitting your job and becoming a full-time caregiver. Now that you realize that you made the wrong decision, I urge you to take the necessary steps to take a new direction for yourself and make new arrangements for your husband. And I'm not sure that allowing your son to move in is the answer. As you said, you're still the one shouldering the brunt of the burden as long as he remains at home.
Please consider making an appointment with an elder law attorney to protect yourself - your house, your retirement accounts, your future income for when you do get a job. Hire a professional to apply for Medicaid for your husband so that you can start focusing on yourself. His disease is only going to get worse and his needs are only going to increase.
Your kids are not your confidants, not your peers, not your friends. You must do what's right for you. It may ruffle their feathers and that's not your problem. It's your marriage, not theirs. They are not the ones facing being broke in an increasingly expensive and volatile world.
And is your son paying you rent? He's living in your house and working out of it. Start making sonny boy cough up some cold hard cash so that you're not broke. Afterall, he thought it would be a great idea for his mother to quit her job.
AlzWife - I just read your reply. We must have been tying at the same time.
New Yorkers are some of the most warm and caring folk on the planet. We are tough and know how to go along to get along. But we also have our limits. Your husband sounds like my FIL, who also never planned for his future (that was my MIL and after she got sick, my husband took over). My FIL also gets pissy when someone tells him something he doesn't want to hear. The result is that he has alienated his sons and their wives. My husband does what he does for his dad out of obligation now. Don't let it come to that for you.
I'm dealing with a lot of anger and resentment toward my husband for enabling his dad's charade of independence for as long as he did. I've been very open with him about that. And I'm working on those feelings because I do love and cherish my husband even though he does not get a pass on doing things that are hard. Your husband is losing that ability and your sons are not looking at your situation objectively, much the same way my husband wasn't looking at his dad's situation objectively.
Ohhh, I just now realized why your daughter was ranting about “female roles”, her brother is living with you and doesn’t want to be catering to him as well as her Dad. I can understand that! Anyway, as you’ve figured out, you’re too young to hang up your skates. Get those helpers in, and maybe offload some stuff to your son as well.
Alzwife - I'm sorry for the situation you're finding yourself in. I hear your depression and discouragement. Something written on your prior thread hit home with me and makes sense, but I'm sure you feel guilty about it. You said you are so ready to live a life of your own. This is understandable. You were tied down with 2 children by the time you were 19. I am someone who believes marriage is for a lifetime. That's the way God who invented marriage intended marriage to be. There are some exceptions. Adultery/infidelity is one but I won't get into a sermon.
I read that you never actually married this man. I understand that by common-law you would be considered married. But vows before God were never taken and agreed to and neither were vows before civil authority.
My sense is you'd just as soon not be married at this point. Except you're not married. This presents something for me to consider. You as well.
It's difficult to reach a crossroads like I sense you are at. I hope this forum is helping you to sort things out. Unless people understand all the facts (which I had to search for), it's hard to avoid confusion and get good advice.
Please don't be embarrassed about your feelings. They are what they are. Can I ask if you have an outside professional to also talk things through with? If not, can I suggest that. There are many people to consider in this equation, but this doesn't mean setting aside your own feelings and desires. It also doesn't mean recklessly acting on them. I believe the right balance can be found.
For me, I take everything to God who always leads me into the right solutions and gives me internal peace beyond anything I could find on my own. I don't sense you are a religious person however you may want to consider talking to God. What could it hurt? I wish you good things and pray you will find peace. You are still so young.
One can only do what one is willing and able. Hands-on, in-home caregiving has a cost, even if you "love" doing it. When a few of our senior LOs were going off the rails, I had 3 kids in school, and working full-time in a business with my husband (employees, downtown office: stressful). My family is the priority. I had to work through TONS of guilt to get to peace in my heart that I wasn't going to be able to deliver happiness to these family members. Particularly because some of them had their heads in the sand and didn't plan, wasted their money and assumed we were going to be their answer (my stepFIL and my MIL). I decided on a mental/emotional goal for myself which was to help them get the best care that finances and circumstances allowed. That's as much as we could/would do.
The experience with my in-laws brought me to the edge of burnout pretty quickly, as well as having 2 brothers-in-law out of state who couldn't help. Reality is what helped me decide how much and when I/we would help.
For some on this forum, cultural expectations of female relatives can create a lot of guilt. My Italian-American family "sacrificed" my 2 Aunts to care for their Mother (my Grandmother). They were 100% assumed into that role and they just accepted it -- they didn't even think about other options. Not long ago one of my cousins was dumbfounded to find out that none of the other Uncles or Aunts (6 of them) contributed anything financially to my 2 Aunts (as they took early retirement to care for Grandma and built a home to accommodate her living there). Graciously my cousin poured out money to them even though my Grandma was long passed.
But my own Mother knows I'm not going to be doing anything like what Grandma had -- my Mom didn't contribute anything to the caregiving of her Mother (my Grandma). So when she starts having "expectations" of my care for her I remind her that even she didn't do it for her own Mother. That always ends the discussion.
You make the break by having a thoughtfully planned discussion with the other parties (siblings, relatives) as soon as the realization occurs to you. And, bracing yourself for the reactions. The possibilities of the reactions should not deter one from making the break. People get over it eventually. But it helps if you go in with solutions. If they are viable, reasonable solutions, this is enough. You have the right to say no to any and all of it.
Who provides the care depends upon the circumstances. There are many on this forum stuck in a quandry because the LO doesn't have sufficient funds to cover increasing care needs, and often these caregivers have full-time jobs and some even have kids. There are tough decisions ahead for them...there's just no way around it.
Are you trying to come to a decision for your situation? If so, I may you gain clarity, wisdom and peace in your heart as you work through it.
When I personally started feeling like I was not cut out for caregiving, it happened because I realized that no matter what I did for my father-in-law, the only things he cared about were staying in his 2BR/2BTH apartment in independent living and keeping both of his aides. He lied. He stalled. He threw pity parties for himself. He tried gaslighting us. He slandered my husband.
Slandering my husband was the final straw. I told my husband I was done with his dad and it was time for assisted living. I called the ALF director (same premises so I knew him), asked if studios were available, and scheduled to see them the next day. After seeing 2 available studios that were sunny, bright, and more than ample, I gave my husband a 30-day deadline after which I would be making arrangements to move back to the home we left in order to care for my now-deceased mother-in-law. FIL was moved to a studio the following month.
When I think about all the time, energy, love and thought that went into the years of both hands-on caregiving and advocating for my FIL that my husband and I both did only to be repaid with scorn and deliberate and malicious slander I feel like a fool.
When you finally decide to leave caregiving behind, move quickly. Do not dwell on self-doubt. There are many elder care services available at every price point. Do not let the perfect become the enemy of the good enough. Do not allow someone else's failure to plan for their old age to become your albatross.
You should feel perfectly fine about looking into Memory Care Assisted Living for your partner now where teams of caregivers will look after him 24/7 and where he can also socialize with people his own age. Or look into other caregiving services that are available.
Remember that your partner is not the only person who matters in this equation......so do YOU!
Beat of luck.
If you can no longer provide safe care then you make the decision to do one of several things.
1. Hire caregivers that come into your home and do what needs to be done. In some cases all that is needed is a few days a week to give the caregiver enough of a break that they can handle the rest.
2. Supplement the caregivers with Adult Day Programs. Again this gives you a break, and it gives the care recipient a break as well.
3. The most difficult of decisions. Placement in a facility that is appropriate for the level of care that is needed. This could be AL, MC or SN (Assisted Living, Memory Care of Skilled Nursing)
There is NOTHING wrong in placing someone in care. What it does mean is that their level of care has surpassed what you can do at home. It is NOT a failure on your part to care for someone it is acknowledging that you can not do it all.
If you are POA, Spouse or a Guardian the decision is completely yours and no one should make you feel "guilty".
My mom was in Independent Living, then AL and finally a NH between 2011 and 2017. One brother (POA) and I (MPOA) and I spent countless hours visiting, advocating, handling finances, doctors and "the system".
None of us had the wherewithal or the desire to have mom live with us and she would have been lonely and anxious at home with an aide (we tried that).
So, I don't think it's a black and white situation. You're still caregiving. You're just not endangering your financial future while doing it.
We hired 24/7 at-home caregivers, which sort-of worked for a couple of years. After it all fell apart (home-care always falls apart), mom went to live in an AL facility. She is still there.
We knew that home care would not work, but as everybody on this site knows, we are always stuck doing home care first, because our LO's always insists on staying home.
Your kids stuck their noses where they don't belong, guilting you into quitting your job and becoming a full-time caregiver. Now that you realize that you made the wrong decision, I urge you to take the necessary steps to take a new direction for yourself and make new arrangements for your husband. And I'm not sure that allowing your son to move in is the answer. As you said, you're still the one shouldering the brunt of the burden as long as he remains at home.
Please consider making an appointment with an elder law attorney to protect yourself - your house, your retirement accounts, your future income for when you do get a job. Hire a professional to apply for Medicaid for your husband so that you can start focusing on yourself. His disease is only going to get worse and his needs are only going to increase.
Your kids are not your confidants, not your peers, not your friends. You must do what's right for you. It may ruffle their feathers and that's not your problem. It's your marriage, not theirs. They are not the ones facing being broke in an increasingly expensive and volatile world.
And is your son paying you rent? He's living in your house and working out of it. Start making sonny boy cough up some cold hard cash so that you're not broke. Afterall, he thought it would be a great idea for his mother to quit her job.
New Yorkers are some of the most warm and caring folk on the planet. We are tough and know how to go along to get along. But we also have our limits. Your husband sounds like my FIL, who also never planned for his future (that was my MIL and after she got sick, my husband took over). My FIL also gets pissy when someone tells him something he doesn't want to hear. The result is that he has alienated his sons and their wives. My husband does what he does for his dad out of obligation now. Don't let it come to that for you.
I'm dealing with a lot of anger and resentment toward my husband for enabling his dad's charade of independence for as long as he did. I've been very open with him about that. And I'm working on those feelings because I do love and cherish my husband even though he does not get a pass on doing things that are hard. Your husband is losing that ability and your sons are not looking at your situation objectively, much the same way my husband wasn't looking at his dad's situation objectively.
I'm sorry for the situation you're finding yourself in. I hear your depression and discouragement. Something written on your prior thread hit home with me and makes sense, but I'm sure you feel guilty about it. You said you are so ready to live a life of your own. This is understandable. You were tied down with 2 children by the time you were 19. I am someone who believes marriage is for a lifetime. That's the way God who invented marriage intended marriage to be. There are some exceptions. Adultery/infidelity is one but I won't get into a sermon.
I read that you never actually married this man. I understand that by common-law you would be considered married. But vows before God were never taken and agreed to and neither were vows before civil authority.
My sense is you'd just as soon not be married at this point. Except you're not married. This presents something for me to consider. You as well.
It's difficult to reach a crossroads like I sense you are at. I hope this forum is helping you to sort things out. Unless people understand all the facts (which I had to search for), it's hard to avoid confusion and get good advice.
Please don't be embarrassed about your feelings. They are what they are. Can I ask if you have an outside professional to also talk things through with? If not, can I suggest that. There are many people to consider in this equation, but this doesn't mean setting aside your own feelings and desires. It also doesn't mean recklessly acting on them. I believe the right balance can be found.
For me, I take everything to God who always leads me into the right solutions and gives me internal peace beyond anything I could find on my own. I don't sense you are a religious person however you may want to consider talking to God. What could it hurt? I wish you good things and pray you will find peace. You are still so young.