These situations are sticky. You can't always get a "group consensus" when making a decision.
When dad passed suddenly many years ago, things changed overnight. Mother decided to sell the house. I told her whatever she wanted to do--whether it be re-marry, re-locate whatever that was her decision.
My siblings were totally against selling the family home, But, they did not step forward (all homeowners) to host Sunday Dinner. I told Mom after dad passed your finances have changed and some things need to be cut.
This was the house where all of the grandchildren were dropped off for Mom to babysit for "free". Our door was always open. Many people lived in our home over the years.
Now, we move to a lovely apartment, mother winters in Florida with one of my siblings and as the family grows Mom babysits for the next set of grandchildren. Now all of the women in the family work "full-time" outside of house, grandma babysits for free as well as myself and eating out is commonplace. We always had home cooked meals from scratch. Supper at 5PM everyday.
My mother has always been on the "giving" end, however, marriage is different than common-law. S.S. comes into play--widow's benefits, pension, homeownership, medical insurance. There are benefits to marriage, especially for a woman. You need a good lawyer. You may not get the Blessing of your decisions that you make from your children. They are not in your shoes. But you can still coordinate, oversee, visit, for the well-being of your loved one, etc.
There comes a time when the services have been exhausted or better yet you are exhausted. This is not an endurance test, it's just how much you can put up with--it's different for everyone. You have to fill your cup so you can help others.
Ireland you hit the nail on the head with the term *services. Since my son is footing most of the bills at the moment in exchange for his room & board, it can feel like a bit of a vacation for me and a chance to enjoy being a full time homemaker & caretaker. I was in school and working for most of my children’s childhoods. I wish that had not been the case, but it was. It’s ironic.
I really do oscillate between feeling very trapped and wanting to work/have my own money + build my retirement fund and feeling like this may be the right thing for another year or two while my LO is still cognizant. The trouble is not knowing if his disease will progress rapidly within the next few years so he’ll need care that I am not willing to provide at home or if the disease will progress so slowly that I will feel really trapped forever.
While it’s true that LO did not prepare for his, my, or our futures….if our son is totally voluntarily willing to help for an indefinite period, is it right for me to refuse? Isn’t filial piety an age old insurance policy? Also, it must be clear that I’m doing this for my children not just my LO.
AlzWife, I've followed both your threads and think you have been given a diversity of ideas and thoughts. You've been marvelously honest with us in your actions and motivations throughout your long relationship with your loved one, and it seems to me you still have best interests of all in mind, despite a few poor decisions financially.
I agree with you that you need to get back to work. And you need to build for your own future. A future that comes so much more quickly than we can imagine, just as you have already experienced.
Arrange for care with his own finances for the man you fell in love with, and who is sadly in a real sense no longer that man. Discuss honestly with his kids as you have already done. I think PatPaul makes a valid point with reiterating that you are NOT married to this man under the law nor in any faith based way. I currently have a 36 year relationship that is a partnership. The difference is subtle, but it DOES exist.
No matter your choices ongoing this won't be easy. You have brought to the forum a real dilemma, a situation long in the making, and have been so responsive to the comments of all.
As to caregiving, I think I told you when first you came to forum that we are not all capable of it. I always knew that I would not be. I loved being a nurse, but quickly recognized that it is a job that requires lots of time off, vacations, and private space to keep your sanity. That isn't something you can have when you do it 24/7. File it under my human limitations, which are many.
Good luck to you. I hope you will continue to update us on your journey; it may help others in your situation. You are not alone in being a young woman enamored of an older fascinating man, and making a life with him without thought of the future.
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!
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.
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.
I may have asked you this in a different response to another post you have made but.... Is your Husband a Veteran? If so there may be help that you can get through the VA. Please check. The conditions that they cover are changing all the time and a Spouse can now get paid to care for the Veteran. Check with a Veteran Service Officer (New York State Department of Veteran's Affairs or Local Veterans Assistance Commission or Your local VFW or The VA itself. Ask to talk to a Social Worker.
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.
My older brother has married four times. His fourth wife is younger than his oldest son. It’s her second marriage.
My brother has had numerous heart surgeries and all sorts of other complications.
You have a different situation. Alzheimer’s disease is challenging in so many ways.
My sister in law never quit work. I don’t think she would even consider quitting.
So far, my sister in law is managing the best that she can. I don’t know how she deals with it emotionally. When she met my brother they were busy all the time.
I do feel like work is helpful for my sister in law. I’m glad she is continuing to work.
She is the first wife that has stood up to my brother. At first, I thought. oh, no, another one bites the dust but I think my brother admires her independent spirit.
Please don’t push yourself past your limit. You deserve to have time for yourself.
Burned out caregivers often end up developing their own health issues, along with anxiety and depression.
Wishing you peace as you decide what is best for you and your husband. Don’t hesitate to consider placement for your husband so that you can return to being his wife instead of his primary caregiver.
Having a good support system is important. Is there an in person support group near you? If not, this forum is wonderful. I did both, in person and the forum, plus a therapist!
@NYDaughterInLaw I’m a NYer too and I have to say your response really made me smile. My partner is very sweet and because it’s my partner not an in-law, it’s a little harder to be so tough, but still I need to be!
I can see him getting really pissy if I were to tell him things he doesn’t want to hear. Getting him to do things he doesn’t want to do has been hard but he’s catching himself a lot. I can see that ability fading.
It is true that he did not plan for his future or his family’s future, just goes with the flow, and the flow has been me doing the bulk of the work, and the kids not wanting to disturb him, and the kids putting his needs before mine and their needs before others’ which is all in order except for me—I must put my needs first.
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.
Thanks for all your answers. The tricky thing is I’m the much younger partner, and I feel like a widow. Being home with him depresses me and drains me. I was guilted by my kids into quitting my job to care for him so I’ve been really stuck and isolated. I’m also broke.
I just need to be brave, find a new good paying job and arrange for housekeeping and pet care. His needs are at the IADL level now. His ADL are still OK. He won’t eat or shower without prompting, but his toileting is fine for now. I know if I get help at home, I’ll still be the primary caregiver, just not the 24/7 slave.
I’m getting financial help from our son who moved in and works from home. He helps with some chores like the dog and heavy stuff, but he’s busy & it’s just too much for me to have no life or money if my own.
My partner qualifies for Medicaid. The whole process of applying for Medicaid and looking for home help, while looking for a job and getting my head together after not working for nine months is daunting and overwhelming.
I’m inching towards getting things done but it’s so hard to face him most days. I’ve been sleeping to avoid everything. I do all the basics then nap.
My kids convinced me to take 3-4 hours a day, go the gym, and I’ve started doing that and I love that time off but it really does not make the hours at home better. It’s just a break, and reminds me how much I want to live my whole life…not just a couple hours a day.
It hurts so much to not have a partner anymore after 30 years and three children, but still wake up to him looking at me like a child and needing me to do everything for him. So, I end up just getting through each day and not planning.
Also, his disease seems to be really slow moving. I’ve been noticing apathy, illogical thinking, and forgetting for ten years.
Some days he wash all the dishes. Other days he’ll sit in the same spot glued to his phone all day. That’s about the range of his activities. Occasionally, he’ll take the dog for a walk which is forbidden b/c of the fall risk for him and the risk of the dog getting off the leash. He does not accept this of course and will “sneak” out. He did this twice last week while I was sleeping. One of my main activities is making sure he does not do this. I am definitely burned out.
He does not make sense anymore when he talks. He’ll say something and get lost if I stretch the conversation past his initial first sentence. Then he’ll say the total opposite or something totally off topic. So I just agree with everything he says or I’ll say I don’t know if he asks weird questions. I try to keep answers very simple when I know the answer to his question. Of course, he asks the same questions over and over. Where are the kids, what are they doing, when are they coming.
Doctors says he has mild/moderate Alzheimer’s dementia. Mini-mental score 20.
Unfortunately, this is what happens when someone marries a person much older. Granted, we never know what life will throw at us. Sometimes the younger spouse goes into marriage understanding the older one will be elderly way before they are, will need caregiving, and accept the challenge.
You're right; you're more like a widow now than a wife. You are depressed (rightfully so!) and won't be able to move forward until you get the depression dealt with. I know therapy is expensive, but there are therapists who work on a sliding scale. There's online options too. Meds can be very helpful. Yes the problems are still there, but they don't swallow you whole like they are now. Don't be afraid of meds.
"I was guilted by my kids into quitting my job to care for him so I’ve been really stuck and isolated. I’m also broke... My kids convinced me to take 3-4 hours a day, go to the gym". Why are your kids calling the shots here? I see your son has moved in and financially contributes. While that's great he is helping, it's not his place to pay for you or your husband's expenses. Is he happy in this situation? Will he want more financial control later?
It's depressing to think about, but your husband will not be around forever (Unless, God forbid, you pass away first because of all the stress). How will you be supporting yourself when he passes? Why do you have to "be brave" to find another job and get outside help? Because it will upset your kids? Will you feel like you failed as a wife?
You're not a bad wife for not being able to do it all. You'd be a bad wife if you kept insisting you can do it all, even if it's almost killing you. Being a martyr will not help anyone. When you accept you cannot take all this on and reach out for help, you have more of yourself left to be present for your husband.
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.
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".
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.
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.
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.
I’m still a caregiver, but I do understand that being a family member doesn’t equal being a good or happy caregiver. I think you start by asking yourself if you are the one who can offer the best support, if you have time, and if you want to. Feeling guilty for not supporting only leads to resentment and guilt, and not good service. When you have answered those questions, start checking with others for caregiving references (I.e. hospital social worker, home care agencies, dept on aging, senior center). There is a whole “ underground network” of those who offer caregiving including professional services. Best of luck to you.
These situations are sticky. You can't always get a "group consensus" when making a decision.
When dad passed suddenly many years ago, things changed overnight. Mother decided to sell the house. I told her whatever she wanted to do--whether it be re-marry, re-locate whatever that was her decision.
My siblings were totally against selling the family home, But, they did not step forward (all homeowners) to host Sunday Dinner. I told Mom after dad passed your finances have changed and some things need to be cut.
This was the house where all of the grandchildren were dropped off for Mom to babysit for "free". Our door was always open. Many people lived in our home over the years.
Now, we move to a lovely apartment, mother winters in Florida with one of my siblings and as the family grows Mom babysits for the next set of grandchildren. Now all of the women in the family work "full-time" outside of house, grandma babysits for free as well as myself and eating out is commonplace. We always had home cooked meals from scratch. Supper at 5PM everyday.
My mother has always been on the "giving" end, however, marriage is different than common-law. S.S. comes into play--widow's benefits, pension, homeownership, medical insurance. There are benefits to marriage, especially for a woman. You need a good lawyer. You may not get the Blessing of your decisions that you make from your children. They are not in your shoes. But you can still coordinate, oversee, visit, for the well-being of your loved one, etc.
There comes a time when the services have been exhausted or better yet you are exhausted. This is not an endurance test, it's just how much you can put up with--it's different for everyone. You have to fill your cup so you can help others.
I really do oscillate between feeling very trapped and wanting to work/have my own money + build my retirement fund and feeling like this may be the right thing for another year or two while my LO is still cognizant. The trouble is not knowing if his disease will progress rapidly within the next few years so he’ll need care that I am not willing to provide at home or if the disease will progress so slowly that I will feel really trapped forever.
While it’s true that LO did not prepare for his, my, or our futures….if our son is totally voluntarily willing to help for an indefinite period, is it right for me to refuse? Isn’t filial piety an age old insurance policy? Also, it must be clear that I’m doing this for my children not just my LO.
I've followed both your threads and think you have been given a diversity of ideas and thoughts. You've been marvelously honest with us in your actions and motivations throughout your long relationship with your loved one, and it seems to me you still have best interests of all in mind, despite a few poor decisions financially.
I agree with you that you need to get back to work. And you need to build for your own future. A future that comes so much more quickly than we can imagine, just as you have already experienced.
Arrange for care with his own finances for the man you fell in love with, and who is sadly in a real sense no longer that man. Discuss honestly with his kids as you have already done. I think PatPaul makes a valid point with reiterating that you are NOT married to this man under the law nor in any faith based way. I currently have a 36 year relationship that is a partnership. The difference is subtle, but it DOES exist.
No matter your choices ongoing this won't be easy. You have brought to the forum a real dilemma, a situation long in the making, and have been so responsive to the comments of all.
As to caregiving, I think I told you when first you came to forum that we are not all capable of it. I always knew that I would not be. I loved being a nurse, but quickly recognized that it is a job that requires lots of time off, vacations, and private space to keep your sanity. That isn't something you can have when you do it 24/7. File it under my human limitations, which are many.
Good luck to you. I hope you will continue to update us on your journey; it may help others in your situation. You are not alone in being a young woman enamored of an older fascinating man, and making a life with him without thought of the future.
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.
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.
Is your Husband a Veteran? If so there may be help that you can get through the VA. Please check. The conditions that they cover are changing all the time and a Spouse can now get paid to care for the Veteran.
Check with a Veteran Service Officer (New York State Department of Veteran's Affairs
or
Local Veterans Assistance Commission
or
Your local VFW
or
The VA itself. Ask to talk to a Social Worker.
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.
My brother has had numerous heart surgeries and all sorts of other complications.
You have a different situation. Alzheimer’s disease is challenging in so many ways.
My sister in law never quit work. I don’t think she would even consider quitting.
So far, my sister in law is managing the best that she can. I don’t know how she deals with it emotionally. When she met my brother they were busy all the time.
I do feel like work is helpful for my sister in law. I’m glad she is continuing to work.
She is the first wife that has stood up to my brother. At first, I thought. oh, no, another one bites the dust but I think my brother admires her independent spirit.
Please don’t push yourself past your limit. You deserve to have time for yourself.
Burned out caregivers often end up developing their own health issues, along with anxiety and depression.
Wishing you peace as you decide what is best for you and your husband. Don’t hesitate to consider placement for your husband so that you can return to being his wife instead of his primary caregiver.
Having a good support system is important. Is there an in person support group near you? If not, this forum is wonderful. I did both, in person and the forum, plus a therapist!
Take care.
I can see him getting really pissy if I were to tell him things he doesn’t want to hear. Getting him to do things he doesn’t want to do has been hard but he’s catching himself a lot. I can see that ability fading.
It is true that he did not plan for his future or his family’s future, just goes with the flow, and the flow has been me doing the bulk of the work, and the kids not wanting to disturb him, and the kids putting his needs before mine and their needs before others’ which is all in order except for me—I must put my needs first.
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 just need to be brave, find a new good paying job and arrange for housekeeping and pet care. His needs are at the IADL level now. His ADL are still OK. He won’t eat or shower without prompting, but his toileting is fine for now. I know if I get help at home, I’ll still be the primary caregiver, just not the 24/7 slave.
I’m getting financial help from our son who moved in and works from home. He helps with some chores like the dog and heavy stuff, but he’s busy & it’s just too much for me to have no life or money if my own.
My partner qualifies for Medicaid. The whole process of applying for Medicaid and looking for home help, while looking for a job and getting my head together after not working for nine months is daunting and overwhelming.
I’m inching towards getting things done but it’s so hard to face him most days. I’ve been sleeping to avoid everything. I do all the basics then nap.
My kids convinced me to take 3-4 hours a day, go the gym, and I’ve started doing that and I love that time off but it really does not make the hours at home better. It’s just a break, and reminds me how much I want to live my whole life…not just a couple hours a day.
It hurts so much to not have a partner anymore after 30 years and three children, but still wake up to him looking at me like a child and needing me to do everything for him. So, I end up just getting through each day and not planning.
Also, his disease seems to be really slow moving. I’ve been noticing apathy, illogical thinking, and forgetting for ten years.
Some days he wash all the dishes. Other days he’ll sit in the same spot glued to his phone all day. That’s about the range of his activities. Occasionally, he’ll take the dog for a walk which is forbidden b/c of the fall risk for him and the risk of the dog getting off the leash. He does not accept this of course and will “sneak” out. He did this twice last week while I was sleeping.
One of my main activities is making sure he does not do this. I am definitely burned out.
He does not make sense anymore when he talks. He’ll say something and get lost if I stretch the conversation past his initial first sentence. Then he’ll say the total
opposite or something totally off topic. So I just agree with everything he says or I’ll say I don’t know if he asks weird questions. I try to keep answers very simple when I know the answer to his question. Of course, he asks the same questions over and over. Where are the kids, what are they doing, when are they coming.
Doctors says he has mild/moderate Alzheimer’s dementia. Mini-mental score 20.
You're right; you're more like a widow now than a wife. You are depressed (rightfully so!) and won't be able to move forward until you get the depression dealt with. I know therapy is expensive, but there are therapists who work on a sliding scale. There's online options too. Meds can be very helpful. Yes the problems are still there, but they don't swallow you whole like they are now. Don't be afraid of meds.
"I was guilted by my kids into quitting my job to care for him so I’ve been really stuck and isolated. I’m also broke... My kids convinced me to take 3-4 hours a day, go to the gym". Why are your kids calling the shots here? I see your son has moved in and financially contributes. While that's great he is helping, it's not his place to pay for you or your husband's expenses. Is he happy in this situation? Will he want more financial control later?
It's depressing to think about, but your husband will not be around forever (Unless, God forbid, you pass away first because of all the stress). How will you be supporting yourself when he passes? Why do you have to "be brave" to find another job and get outside help? Because it will upset your kids? Will you feel like you failed as a wife?
You're not a bad wife for not being able to do it all. You'd be a bad wife if you kept insisting you can do it all, even if it's almost killing you. Being a martyr will not help anyone. When you accept you cannot take all this on and reach out for help, you have more of yourself left to be present for your husband.
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.
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".
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.
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.
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.