My mother is 90, I have been her caretaker all my life, in her declining years. (last 15 years)
My situation allowed me to move into mom and dads house, and, while dad was still living, I personally did everything around the house. Mowing, laundry, cleaning....you get it.
My dad died in 2015, after a brief (8month) illness. I took care of him, in home, while his health deteriorated.
My mother has been needing full time care since 2013. She was able to get around the house with her walker, use the bathroom, shower on her own, etc. but she needed meds, meals, and help paying bills, all the stuff that daily living requires.
As time moved on, mom has regressed in her abilities to be “self sufficient.” She has been hospitalized at least once every 6 months over the last 4 years, mainly with severe UTIs. The drill has been, get well in hospital, go to rehab facility, get strong and come home.
2 years ago, I was diagnosed with stage 4 cancer. Still, I was able to care for mom, at home.
However, the cancer has given me new personal health challenges. I need to recover from some serious health setbacks. And, mom is in a skilled rehab center, wanting to come home. I might add, her ability to walk around with walker, go to bathroom, shower.....is very limited now. She needs more care than I can personally give her.
The problem is, everyday I talk to or visit her, the whole conversation is “when am I going to get to come home”
I have explained to her my dilemma, and she seems to understand, at least that day. The next visit it’s the same conversation. She cries, says she can’t take it there, has a complete meltdown every time I visit.
My sister is POA. She could take mom at her home, with a little rearranging but says she cant do it. Granted, her home is split level, and would be difficult for mom to get to bathroom ect.
However , add a temporary potty, 2 strong guys (husband and son) could carry her up stairs for a shower once a week....you get the picture. It could be done, but she doesn’t want to do it. She keeps saying, “we need to get you (me) well first, so mom can come home" (will have to have assistance)
I really think my sister ultimately wants me to take care of mom, so she can reap the inheritance.
She has no interest in my health, other than I get better to watch mom.
My mother has no understanding of what I am going through physically. It may take me 6 months to get back to where I can take her.
So, I have tremendous guilt, because mom is in a home. I have no support from family, as sister is only blood I have.
I have health issues that I have to address.
What are your thoughts on what to do with mom, and how do I relieve myself from all the guilt I have about keeping her in the nursing facility?
And visiting everyday, only to feel worse than when I came? I’m really at the breaking point, and could use some solid advice.
Also, I am disabled. Was wondering, since I’m caretaker, and disabled, are there any recourse measures I could take so if mom has to stay in a home, they won’t come after her house, which I live in, because I’m disabled? I know an elder attorney would be a place to start, but my experience attorneys is, they get the lions share of the assets, and don’t provide the solid direction, representation I need in order to follow this through, while trying to achieve our long term goals.
Any thoughts would be appreciated!
i will contact an Elder Law attorney.
i need to figure out how to ensure her savings are maximized.
appreciate you taking time to reply.
truly means a lot!
God Bless
Having experienced a little of your issues i can honesty say....your sister and family are not interested in this obligation towards their mum. So i would (if me) not even ask for assistance. Its her mum too after all but as i was told in my circumstances its an inconvience to their lifestyle whatever....selfish
You should be proud of yourself for what you have done all this time for your parents. And esp mum.
I feel you are not psyically capable or well enough to continue.
You cant look after anyone else at the sake of your health and wellbeing
I find pple get upset when you leave from visiting. The staff are trained or should be to calm and distract her.
Life is always so hard for some ...believe me
You have put in 3000%
Can you speak to a social worker at mums care?
To give you the reassurance and peace of mind that perhaps the best place for mum is in full time care
So you can at least rest and try and get well
We all feel sad abt placing loved ones in care but that is life, sadly
Do not feel guilty....feel and know its possibly the best solution for all as hard as it seems
You could even cut visits down to every second day (esp with covid about too )
Be strong
You now come first
Esp with your own health
Im sure mum would agree if she fully understood
As for some families...pls don't shoot me......they will sit back and do zip because they know you are and have been doing it and now just expect it
You come first
You have to
We only can do so much till we burn out ...then we are no good to anyone anyway
You my dear have been a saint in my eyes and im convinced gone way beyond a lot of pples strengths and love towards mum
Ps. For what its worth i don't think your sister and family have much compassion. Imho. Sorry
Let guilt go. Know mum is in the best place for her for now and rest assured that pple care about you
Hugs
im probably through taking care of mom, and will just have to accept she in a good place, and I need to take care of me, so I can be around for the people I love, like my 3 children.
again, appreciate your thoughts, they are spot on.
God Bless!
You can not expect your sister to take your mom in. It is not for everyone so I would suggest that you accept this and not be upset with her. Be glad that she is saying no instead of taking mom in and not wanting her to be there. That would not be good for anyone.
Your mom needs more care than you can provide at this time. She has to stay in the home. She doesn't have to love it but she is being cared for and you have to try to let that go because you know that it is the best solution.
When you are better, I suggest that you do not take your mom back home.
Good luck.
it just isn’t in the cards anymore.
appreciate you, and thanks again for taking time to respond!
Second, you need time to recover and heal.
Third, your Mum is in the place she needs to be in right now. Getting 24/7 care from trained staff.
Stop borrowing trouble trying to get Mum out of the facility and concentrate on getting better yourself. Perhaps in time she will settle into the nursing home.
I do not understand why you have guilt? You are recovering from cancer and are disabled, why do you feel guilt that you cannot provide care?
if visiting her causes you more stress, reduce the frequency of the visits.
My sister is in it for her. She will visit mom when she’s home, for 45 minutes 3x a week.
we’re in this together. I’ve done about all I can physically do. It is her who says ‘ I promised mom I’d never put her in a home’ but she wants ME to get better so I can take care of her. Glad you think she’s right in setting boundaries, and shouldn’t lift a finger for her mother’s care. I feel differently, however. Way different.
Sometimes in caregiving, we’re frustrated by choices other family members are making, especially when they seem too self-serving — as compared with our choices. Once again, our thoughts are only adding to our own problems.
So, it is by reasonable expectations of ourselves, and ignoring our expectations of others, that we can fulfill our own best experience. I think you have neglected your own health, and/or you’re at risk of doing that now. I hope and pray that your first priority from here on out will be maintaining your personal wellbeing to the greatest extent possible. If anybody has earned that right, it is you!
so thanks again, and please keep me in your prayers!
But I’m not at the stage of needing full attention.
i can still do everything I did before setback, it’s just now I have a broken tibia,
and wear a brace, so I move slow, and can’t bring her home just yet.
im 60, she’s 90. So I have some good years left, and I’m gonna heal, just a bump in the road for me.
mom is getting good care, as far as I can tell, as I’m not allowed in the facility, but talking with the nurse, management, they seem on top of it. And, from what I can see through the screen, place looks pretty clean.
it was weird, when she was discharged from hospital, we had a hard time getting a home to accept her because of capacity, COVID issues.
this one was not on our radar, but it’s 40 minute drive from the house, and appears to be a good home. So, she’s in good hands, I just have to squelch the guilt, and get myself together, however long that takes, and let mom know I love her, but she’s just gonna have to be patient and learn to deal with being there until I can get her home.
that seems to b the consensus on this site, as well as good friends and family Doctor, who I like and trust.
thanks for your feedback, and concern!!!
I would talk to the Nurse and see if your calls/visits cause problems with Mom. If so, I might cut down on them for a while. Anxiety is not good for her. Try not to feel guilty. You cannot control what happened to you. And chemo can take a tole on someone for years. You have done your time. Mom now needs more care than one person can provide. I live in a 4 floor split level and it was one reason Mom was placed in an AL. Too many stairs.
First, Medicaid does not take your house. They are not in the realtor business. I feel I was given miss information when I applied for Moms Medicaid. One caseworker told me my disabled nephew would not be allowed to stay. TG the caseworker I got didn't care. I found out things when I got the paperwork for the lean after Moms death.
The paperwork asked if a family member resided there and if so was that their permanent residence. Did they have a disability. It went on to say that if so, a lean will be placed on the home, the person can remain in the home until he/she dies, leaves or sells the home which at time the lean will need to be satisfied. So, I look at this as, Moms house is your permanent residence and you are disabled so you should be able to remain in the house. You may have to prove you can pay the bills, upkeep and taxes.
A good elder attorney very versed in Medicaid should be able to help.
I believe, and I hope you will forgive me--as a nurse--that you have some magical thinking going on. You are brave and determined and I do not mean to rob you of hope, but I will hope you have spoken to your doctor about your own diagnosis. You already know that you currently cannot care for mom in your home.
This isn't a time for "guilt". You are no a felon. You are not an evil-doer. You are an ill woman with a Mom in need of care you can no longer render. Your sister feels her own limitations preclude her doing the in home care as well, so Mom is now where she needs to be.
I would ask you to seek some counseling; ask your doctor for some recommends, so that you can realistically sit (Licensed Social Workers are often good at this) and discuss life passages with someone who can set out realistic goals. From what I can see here it is a matter of adapting to some very tough truths. You cannot now care for your Mom; your own health is uncertain; your Sister cannot/will not care for your Mom. Your Mom is where she needs to be now.
What an awful lot is on the plate for your entire family.
You are giving, loving and very brave. But there has to be some realistic thinking about where you are right now.
Please see someone skilled in working through something this tough, that effects an entire family. My best wishes go out to you all.
Your guilt is what's called "false guilt". It's self contrived on being too hard on yourself. Living in the "what if", "could have" or "should have" world makes for a sad life. You have been her caregiver for FIFTEEN YEARS! You have made the decisions you thought were correct at the time. Hindsight is 20/20.
I commend you on your caregiving, especially having to deal with your own issues. Your healthcare is the priority here.
As a former director of admission for a rehab/ltc facility, a social worker, an asst. living admin., and a daughter who was caregiver for her 90 year old Mom, let me say in my opinion, you have run a good race and done more than your share. Yes, you need to respect your sister's boundary line (you can't force her to take care of Mom can you?) and now you need to set some boundaries of your own to save yourself. I'm sure in her normal mind, Mom doesn't want either of her daughters to pass before she does but if you put your own healthcare aside to take care of her, you are certainly setting the stage for that scenario. Mom is currently where she can get the best care. Be the good and caring daughter that you have proven yourself to be and let her stay there. Concentrate on yourself now.
You don't say who has DPoA or medical proxy for Mom or what state you are in: Medicaid programs all differ in administration slightly but they are not in the real estate game. They don't want Mom's house and most state indicate that if Mom's home is also the permanent residence of a children (not necessarily a disabled child) that child may remain in residence for their lifetime after which Medicaid will activate the lien on it so funds spent on Mom during her stay at a facility may be recompensed. Call your local Office on Aging or google the internet (and ask for referral) for a Certified (make sure they are certified) Elder care attorney who can guide you through the maze; www.naela.org is a good place to start.
Let your sister know that you are focusing on your health and your life at this time and going forward. As she was the one who promised Mom she would not put her in a nursing home, she is more than welcome to make provisions for Mom at this time if she does not wish to live in the nursing home but those will not infringe on your right to live your life. Make the statement, don't hang around to argue with her (she try to wheedle you into relenting) and then turn on your heel and leave. Yes, she's going to be mad (expect it and don't crumble) - it is her right to be mad when she doesn't get her way. Stick to your guns. It will not be easy and neither she or Mom will be happy campers but you can do this. Do it for yourself, do it for your children and do it for any grandchildren you may have. Now go out there and conquer the world or at least your corner of it! Good luck and God Bless
If you're a giver, always looking out for others, always feeling drained because you break yourself so others can stay together, take a break from it. Add value to your own life first. Add self-love and peace to your life first. ~Sylvester McNutt
Keep your mom in the nursing facility while you add self-love and care to YOUR life now. You owe it to yourself to do that. Your health is on the line now and your mother is getting some good care right where she's at. It's unfortunate that she wants to come home but can't............we can't get what we want 100% of the time, ie: you wouldn't have stage IV cancer if that were true. Stop visiting so much and set down some boundaries that take YOUR mental health into consideration now.
It's okay to take care of yourself, did you know that? Many times, care givers get SO caught up in taking care of their loved one that they get the mistaken notion that the parent is more important than they are. That HER human life is worth more than YOUR human life, when in reality, both are equal. You are just as important as she is so I suggest you start treating yourself accordingly. Let go of 'guilt' as it serves no useful purpose. You've done more than 99% of any child would do for a parent and have gone above and beyond the call of duty. Now it's too much and you simply can't manage her care. Period. It's not a choice, it's a fact.
Wishing you the best of luck with your health and your disability and with making the correct decision for YOU now.
If you can get your mother into a facility-do it-easy for me to say this but in reality is hard-i know that too. Take care of yourself which is impossible to do under your current circumstance/health issues etc. I am relatively healthy, but exhausted emotionally and physically. I try to take a day off on the weekend, but mom usually calls me with some kind of problem that i should do something about immediately.... I want to get off this bus at the next stop but the doors won't open.
and it is usually done no matter who lives there, because in some cases nationwide judges do no follow due process. Maybe you need to become mom’s guard/Cons since you have been for years doing what is in her best interest anyway proof you are the one that truly cares that much. Maybe get mom in a smaller setting more attention there close to you after some research on ratings by other families and Medicare ratings of licensed facilities. Does the place she is now allow a cellphone or Ipad to face time with her certain times and days of the week to give her some routine. Goggle aaapg for more info on what not to do regards to moms decisions. God Bless You for all you do for your mom.
Is there enough money to hire someone for 24 hour care? Or maybe 8-10 hours of care 7 days a week? .... in order for mom to come back to her house? If there is, then sis needs to hire and start paying the bill out of mom's money. There are many people out there who will scrimp by on health care for a parent to ensure there is $$ left for them. That's not what a parent's assets are for. Inheritance is only the remainder of what is left after a person dies. I will add this - a split level home is NOT a place for someone who can no longer manage stairs. Porta potty or not.
Could you and mom be in the home together IF all of mom's care was paid for? That would be the consideration at this point. Elder attorney's don't necessarily take a huge portion - it just depends on what you ask them to do. It's worth a consultation. There are also some stipulations that prevent a state from getting the home, after she passes, if a child has lived in the home with them for X number of years prior to death date. Elder attorney could certainly answer that question for you
My father continually asked when he could go home despite being unable to walk or use the bathroom independently. We deflected the answer at first - when you're stronger, when you can walk unaided with a walker, when we get the home fixed appropriately so it's safe for you.... but he had moderate-severe Alzheimer's and could never remember, so we repeated it a lot. It is not easy and it will weigh on your heart, but if you know she will be well cared for not in your home, then perhaps assisted living or a group home would better suit her at this time. Have you spoken to the social worker at her facility? Is the facility continuing care, meaning can she move from rehab to assisted or skilled nursing within the same facility?
Frankly, the stress involved in caring for a disabled elderly parent is very difficult to handle in the best of health, and although you may feel, or your family may make you feel guilty for not being able to adequately care for your mother, from what I read, you should not do so. None of these situations are easy and we all love our parents and want what is best for them as well as for each of us, but at this time it sounds like what would be best for your mom is to not live with you.
If funds are an issue, speak with the social worker and find out if there are any resources available. If your father or mother served during at least one war in the armed services, investigate if the remaining assets are low enough to qualify for the VA Aid & Assistance Pension for veteran's and/or their spouses. It takes awhile to move through the process, and there is a look back period, but she may qualify.
Good luck!
The other side of the problem is that so many people here have said that the worst decision they ever made was to move mother in with them. So many people have made the ‘golden promise’ that mother will never have to go into a care facility, and are then torn with guilt when they have to break the promise.
The chances are that no-one on the site would say that your sister is wrong in not wanting to live with your mother and provide full time care. Everyone would also understand that your mother wants ‘to come home’ , and that’s distressing for you. Like your sister, mother wants things to get back the way they were before you got so ill, and she got to need more care. However mother is now getting the care she needs, even if it isn’t her choice. Sister is doing what she wants to do. What people here are concerned about is you - your own health, including your distress.
The best thing you can do is to look after yourself, while other people look after your mother. Your sister will have to deal with the fact that she is breaking her own ‘golden promise’. You can’t force sister to do what she won’t do, she can’t make you get better. Stop punishing yourself. Many facilities discourage frequent visiting, because it keeps the resident asking over and over about going ‘home’. This stops them from adjusting to the fact that this is now their new home.
Accept that fact that you might have died last year from cancer, your mother would have been in permanent care since then, and your sister would have had to deal with her own conscience. Would dying have made you ‘guilty’? Are you ‘guilty’ because you can’t force things back to the way they were five years ago? Let yourself off the hook. None of us get these choices. We just have to cope with what life throws at us. Please be kind to yourself, forgive your sister, and feel glad that your mother has good care. Please!