How to know what is right for my mother? She wants to go home- Will she hate me?

I’m very sorry about your mom. It’s so hard to watch our loved ones become more and more sick and helpless.
i understand your feelings of guilt. It comes from wanting her to be well and whole. Unfortunately, you have no control over that part of her life.
the real question may be, how guilty would you feel if she came home and you couldn’t give her the care she deserves.
Reassure her that you will be there for her and that you’re not going to leave her. Be involved in her care and take care of yourself so that you can be there for her.
God bless.

One of our very wise posters here says you should not feel guilty unless you have done something wrong. It doesn’t sound like you have. It sounds like your brothers are right.

No one I’ve ever read about on this board has ever said they enjoyed putting a loved one in a facility. The most difficult thing about it is being realistic. Most of us caregivers are not medical professionals. And, even if we were, it’s different going to work, putting in your hours with patients you are not related to and then going home. When you care for a family member, you are on-call 24/7/365. Even if the person you’re caring for is pretty easy-going, like my hubby, there are still the 3AM potty calls, the continuous washing, changing, wiping, fetching food, drinks, and the worst is worrying about a medical emergency and that you will not know what to do.

You mom, like mine, if she is becoming confused and may be suffering from dementia, may want to return “home” to the place she grew up. No Senior Citizen who has perhaps lived in their home for decades is happy about leaving, admitting they need help and counting on the kindness and personal care of people they don't now. They often react with anger and put the blame on the nearest person. This person always has doubts and feels guilt. But when we realize that if we did take the loved one into our home, we would be doing the work of three shifts of caregivers around the clock, acceptance comes easier.

I hope you and your brothers and the “everyone” you wrote about will sit down and speak frankly about your mother's needs. Offer your thoughts and listen to their’s. Sending you good vibes. Come back with updates. We care.

Your mother's needs are only going to increase. Let your brothers take the lead and do not fight them on placing her in a nursing home. You still will be able to advocate for your mother at the nursing home. Residents whose family members show up to visit and who treat the staff with respect usually adjust well.

Mom cannot return to her home. She needs 24/7 care and that is expensive. Are you willing to care for her 24/7. Your brothers suggest a nursing home. Since they have, you may not get any help from them and when u do ask it may be "told you to put Mom in a home." If Mom is 93 then ur around 60? Are you able to lift dead weight. Change Depends, clean up her messes. Deal with her not understanding why she can't go home. Trying

While she is in rehab, have her evaluated for Long term care. If there is a nursing section in the same building, then she could be transferred over. If not, start looking and visiting NHs in the area. If she has no money apply for Medicaid.

Think hard before u take on the responsibility for her care. Its like having a baby. Your life is not your own.

Yes, I long for the mom who was my friend who I spent time with everyday. While she is 93, she was sharp as a tack and we enjoyed each other’s company.
you make an excellent point, how guilty would I feel if she came home and I could not care for her.
thank you for your thoughtful answer. I needed this reassurance as a decision has to made very soon. I love this forum and am glad I sought help!

Hi Debbie,
I too have been struggling with guilt and sadness since this virus caused my Mother’s AL to go into no visitors allowed. She has Parkinson's and dementia. It is so hard to not physically see my Mom everyday right now. The face-time by phone is so short.
Even though I want to bring my Mom home and take care of her, I know that I cannot physically do it 24/7. Also, if I caught the virus, I would not have any backup. My Mom would not want my Husband and boys taking care of her bathroom needs.
Know in your heart that you are doing all that you can to keep her safe right now. Be as supportive as you can to the staff that are helping her.
Both you and your Mother are in my prayers!

Debbie, cry about this all you want. You will be grieving. The Mum you had before the stroke will be different to the Mum you have now. Massive (((hug))).

Life has changed & I want to tell you there will still be good days. You can still love your Mum, bring her a hug & smile, her favorite treat, sit in the garden, watch TV, spend time together - no matter if she lives in her home with Aides, your home with Aides visiting or a Nursing Facility. Just tell her you love her. Home will be where love will be.

I am sorry about what you are going through. I too had to place my mother in a NH at age 87. My mother always used to ask me to bring her home but she lived with my brother and while he provided all her support, he couldn’t assure her hygiene

Both my brother & I hated to have to place her there. Prior to this episode mom used to sneak out of the house at night to feed the animals her leftovers and also almost burned down her apartment by leaving hot oil on the stove & forgetting to turn it off. She had moderate dementia that was getting worse by the day. She would argue loudly about everything.

I coped with my decision by constantly re-affirming to myself that the NH was the safest place for her to be. Neither my brother nor I could meet her needs as far as supervision. The hospitalization that prompted this placement was for a fecal impaction; came to find out mom hadn’t moved her bowels in 2 weeks. She passed away at 89 & only had to be at the NH for 14 months. She had a stroke and then another a month later when she passed away on hospice at the NH. I was there.

Try and make yourself a mantra of “safety first” when making your decision. Her safety living with you at home will be your responsibility 24/7. You cannot in reality provide that. Plus physically at our age (I am 62) it’s a lot for one person. It will all be on you.

Putting my mother in a nursing home was the most difficult, gut wrenching decision I have ever had to make in my life so far. I felt enormous guilt every day as did my brother. But realistically it had to happen.

My mother’s brain was broken as she was self sufficient and independent and worked until she was 72.

No doubt your mother taught you that there will be hard decisions in life that have to be made. You are making that decision now for you and your family.
Under different circumstances she would be proud of you sticking up for yourself your family.

It’s a hard decision. I wish you clarity & good luck. Either way there will be plenty of tears. I cried so much over it too.

It really depends on how much care she really needs and what you personally are capable of - I cared for my mom for several years after she could no longer walk, but I was several years younger than you and mom was still able to pivot transfer to her wheelchair and shower bench. Ordinarily I would never discourage anyone from choosing long term care and I don't want to be the one to add on to the guilt but if it were my mother I would seriously consider bringing her home temporarily.

You have to do what feels right for you. There are a lot of options out there now. There are places that can send caregivers to your home. You can get people who assist with bathing and personal hygiene , prepare meals, give medications or do nursing care . There are also assisted living places which offer varying levels of care . I would look into both of those. I think your mom will feel fine as long as she is treated well. With a little research I am sure you will make a good choice for you both. Good luck!

The loss you are feeling is to be expected. However, in spite of those feelings, please ask yourself what care you can realistically provide and for how long? Please make sure you fully understand what care she needs. Spend as much time as you can at the rehab center to observe her needs yourself. This virus will make that tough, but I've seen too many people rely on someone else to accurately tell them what their loved one can/cannot do that I had to mention it. If you can't be physically at her side, make sure you are asking specific questions of the staff. Ask to speak to PT/OT, speak to dietary, speak to the nurses - don't rely on any one person to tell you your mom's capabilities. And please know that elders will make misleading statements to the rehab staff regarding how much help is actually available to them at home, what medical equipment they have, how many steps their home has, etc. Somehow, these statements often don't get checked out with the family and can be false - but rehab staff believes they are making a safe discharge. And please remember that rehab is a protected, sheltered, safe environment where patients learn the drill. Some do fairly well in rehab, but are a train wreck once home because they could function in rehab but cannot manage home living and the complexities therein - even if they have help. Please don't let feelings hide the truth. One last word of caution, if you decide to have "helpers" come in to the house (nurses, aides, meal delivery, cleaning, etc), please be certain of what help you can get for her, how much it will cost, who is paying for it, and how long the help will last. Often, the family believes (because they were told it's true) that a lot more in-home help is available than what really is out there. Once home, your mom will be your responsibility and those who are currently advising you on these matters will have moved on to other patients and problems and may not even get back with you if you contact them. Your brothers seem to be trying to look out for you.

My mother has Frontal Lobe Dementia and Delusional Disorder, but her short term memory is fine and she appears normal to anybody who meets her. I had to place her in Assisted Living to stop her from being scammed. She sent over $80000 to a man overseas that she thought was in love with her. Even after I took guardianship and closed her accounts, she sold most of the furniture in her house to send him money. She hates Assisted Living so much, and guilt trips me constantly for putting her there. Given her anger, I thought she would hate me forever, but after almost 6 months in the Facility, our conversations are calmer and she tells me that she loves me, and things are better. Hang in there! You may get hatred and anger at first, but it doesn't last!

Dear Debbie
Your story is my story. My Mom had a major stroke at 90 leaving her completely paralyzed on her right side. It was nothing short of a miracle that she survived let alone RECOVERED mobility. That was 6 yrs ago.


She was in Rehab for at least 2 mo if not 3 and worked diligently in Rehab as well as OT to the point of tears and begging to come home alot. The Rehab dept was excellent but the nursing end of it was definitely sub standard. That was difficult.

Unlike you tho I was able to be with her everyday encouraging and yes pushing her thru Rehab. I told her she could not come home unless she could walk and I knew she could do it and together we would get thru this. She is of Finnish descent and a tough and tender lady; my very best friend and sweet as pie.

I was able to bring her home. It was the hardest job I have ever done; the best of times and the worst of times that I will never regret it. I had aides for her during the day...I took the nite shift. It was expensive temporary as Mom returned to baseline and was able to be alone as she was prior to the stroke. We were so lucky to have achieved what I feel you want to do for your Mother right now. As others have said it was not easy. I am single also. Had I had a family it would have been a very different story.

I think now the focus for both you and Mom should be the hope of recovery. If you decide to bring her home or she ends up in LTC recovery will serve her well either way. It really is what you both want right now so give it your best shot. She has to put in the work. Do not skip the all important step of healing.

Reach out to PT and OT....get their names ...find out exactly what exercises your Mom is doing and what activities she is doing in OT. Encourage her on Facetime and thru letters that you "met" so and so in Rehab and they seem really nice and does she like so and so etc etc. Talk about her activities and hope for recovery. Try not to stay in the negative for too long. Make it clear she cannot come home unless she can walk or whatever your criteria is. That was mine...I knew I could not mange her non ambulatory.

The answers you are seeking by and large depend on her recovery. In the meantime you both have work to do. You must prepare the home with grab bars a higher toilet seat etc. Thats the easy part and will add value to the home in the long run. Take your time. You can look on line...most hardware store are open and will deliver curbside. Let that be your discussions with Mom also....that you too are working hard to get her home. The ones I put in Moms bathroom look like high end towel bars.

I know you want to know right now what your decision will be. I think the answers you seek will depend on her progress in Rehab and that will take time... with COVID19 maybe even more time.

The very best of luck to you and your Mom in this journey. Please reach out to me with any questions you may have. I am here for you okay? xxxooo

These are VERY DIFFICULT DECISIONS. My dad was 89 in 2018 when he fell and broke his hip - he had a hard time with recovery from surgery ie anasthesia, etc..but eventually made it to rehab and it was slow going in terms of walking but after 6 weeks was walking with a walker with assistance - my father was active until his fall - walking, going out to garden, etc etc - never sick a day in his life....but kept falling every year.....i was setting up homecare for his return home BUT was very NERVOUS about bringing him home since my 88 yr old mom was exhausted and sick herself.......my dads mental abilities would have him probably keep falling even with aides around but was going to try.....in the 7th week of rehab he developed a mrsa infection that went to heart and he became septic......was transported to hospital 9 days after falling sick(rehab center was adamant about treating him and they did such a poor jobn and i had to do a forced discharge)...in the hospital he was pretty sick - he wasnt eating or drinking - he was too sick.......his only hope would have have been 8 weeks of IV antibiotics, feeding tube, urinary catheter etc...he also had an unstaged bedsore and mentally and physically suffering......he still couldnt walk due to hip - i was like - do i want to send him back to these awful rehabs to lay in a bed for 8 weeks with all these tubes where they wouldnt address his suffering etc and so i opted to do hospice and he died in 3 days - the guilt has consumed me thinking maybe he would have gotten better in rehab........also, i think part of my decision might have been the fear of taking him home - unable to walk, pee, etc vs a nursing home which he would have hated......NOW my mom contracted CORONA and was recently hospitalized - ive been caring for her 24/7 for the last 3 weeks - up all day and night - i realize how hard it is to care for someone ill......but she can still eat, pee, walk with assistance etc - i cant imagine doing this for someone at home if they had catheters, feeding tubes, etc......guilt tends to consume me with all decisions...its rough for end of life with parents.

I'm so sorry this is happening. The question is do YOU think you could take her of your Mom? Research all the work that is involved and ask yourself if you could handle it. I would call the counsel of aging and ask what services are available to your Mom if you decided to bring her home. Medicare does pay a part or all of it such as visiting nurses, pt, etc.

I moved my Mom in with me (my Mom suffers from Alzheimer's and dementia). She is 94 now and I don't regret taking care of her for 1 second. I have given her sponge baths in her bed after she dislocated her hip, etc.

I wouldn't listen to your brothers and others because you know yourself the best. If you don't think you could handle it then look for a place to her.

It's a lot of work and some people are cut out for this kind of work where other's are not. Just be honest with yourself.

Best to you!
Jenna

Can we ever control how others feel? The answer is absolutely not. We simply can’t. I doubt if she will hate you though. Confused, maybe. I would hope that she would not hate you.

So, remember that sometimes we are able to do everything right and people still react only viewing the situation from ‘their’ perspective. It would be wonderful if all people could see the other person’s view too.

We don’t live in a perfect world because people aren’t perfect. We have challenges that we face that make matters extremely difficult. Most of us are all trying our best. How can you possibly do more? You care very much but you can’t snap your fingers and make your mom’s problems disappear.

Plus nothing is normal right now. Nothing! So, we cannot pretend that it is. We are all adapting to this situation. Our stress levels are higher at this time. I’m so sorry that you are struggling with all of this.

going through this with my mom... i broke my wrist and have no help and snf is discharging her in 2 days.. medicare will only provide limited home heath with ot, pt for maybe 3 times week for 3 weeks ..we cannot afford caregivers -not as much as we need them... had to get elder care attorney involved to get her on medicaid so she can go into nursing home ...for now..... her safety is important as well as mine..she had partial foot amputated and was getting rehb in the first snf-a place i wasnt thrilled about but pt was good-then she got pneamoina so back to hospital .after week back to her current snf (a place that looks really nice but the worse when it comes to dealing with administration, etc..i could go on and on-its been a battle and im horrified shes probably getting subpar care but since covid cant go in and she doesnt hear well on phone si i cant talk to her) she needs help getting up into wheelchair, diaper change, bathing , etc...once my wrist heals i will be going back to my fulltime job in hospital , i work on the frontline and would have to be stressed thinking im brining covid home..
like my attorney said, lets get her in safe place and hopefully with more time she'll progress and yes, be able to come back home if it seems like it will work... so keep that in mind - she may progress and you can honestly evaluate situation and decide that you can mange ...believe me , im racked with guilt too. my mom only family i have, shell be 91 soon and moved in 9 years ago help her out, each year shes become more dependent on me...before this foot infection she get around with her walker, bathe with chair, had meals on wheels, she was quite independent in her home but homebound but always tried so hard not be burden...so yes, the guilt im feeling is overwhelming-but for now, it about her safety and well being..not my guilt,,,big hug to you

You need to stop beating yourself up. You did not give mom a stroke. You did not create the deficits she has after her stroke. Of course, mom wants to go home and live her life as usual, but her life is different and she probably doesn't comprehend how different it is.

Work with social services to get mom placed in facility that can meet her needs. She will likely be in quarantine for the first 2 weeks - if in a new place - and have limited contact while COVID-19 pandemic is still a problem.

Find creative ways to stay in touch. Send goodies, lotion, perfume, pictures, letters... Call several times a week - not daily. Stay close in every meaningful way with social distancing and keep telling yourself, " Mom is here to get the care that is too difficult to get at home."

Your situation sounds much like mine was. I brought my mom to live with me three months after I retired. Things were not perfect, but managable until she had a stroke, one month after my back surgery. I brought her home after rehab. She couldn't do anything without assistance. She had mild dementia before the stroke and it was much worse after. My entire life was consumed with her care. I had to install a baby monitor in her room because she would try to get up in the night and fall. My surgery was a success, but I lived in fear that lifting on mom would cause more problems. I slept with one eye and ear open, as they say, much like a new parent would. My only alone time was in the shower and then it was a quickie. That's where I did my crying. I love my mom and I'm not sorry I tried to care for her, but it almost ruined any relationship we had. I had no outside life at all. I was so tired and emotionally drained that I would say mean things to her in frustration and hate myself after. I went to bed every night promising myself I would do better tomorrow. Tomorrows were not better. Eventually she fell and I couldn't catch her or get her up so the ambulance was called and she went to the ER. She was admitted with a broken pelvis. I talked with a social worker at the hospital and described our situation to her. She was amazing! Wise, kind and non-judgmental (I was judging myself enough for both of us). Together we decided it would be easier if she went to a rehab facility that also had a long term care unit that she could transition to if it was determined she could not come home. After therapy mom still couldn't walk more than a few feet with her walker, she couldn't get in my car without two people assisting let alone navigate the stairs to get to my condo so the transition to long term care was made. It's been three years now and I am thankful that I was able to get mom admitted to the nursing facility with the best reputation in the area. She has the medical care I could not offer at home. She has activities available to her that I could not provide at home. I visit often and our time together is filled with chatter and laughter not frustration and anger. I still have feelings of guilt from time to time because I know mom never wanted to be in a home, but the reality is that she is where she needs to be. I know this is a long story, but I thought it might be helpful for you to hear it. I'm not saying this would happen to you if you bring your mom home, but it is something to think about.

A nursing home with this virus going around would be about the worse possible place in the world to send anyone! Where was teh first mass cases reported in teh USA? A nursing home! Also, you probably wouldnt even be allowed to see her! If at all possible avoid at all cost! If you cant take care of her then hire someone to come into your home to help, call hospice, call your church, etc. Also use a hoyer type lift to lift her until she can put some weight on her foot then a sit to stand lift is a little easier if possible.

Debbie, get her placed with Medicaid pending.

Her hanging up on you is manipulation to get her own way. Don't buy into it. No one is going to be happy with the situation, not her and not you. It is so difficult to make the decision that you can not safely care for your loved one and they must go to a facility. It sucks, but I promise you that you will get over the feeling of guilt when you come to terms with the fact that she is safer in a facility and has 24/7 care available. Just don't buy into her attempts to make this your fault because it is NOT.

I bawled like a baby and felt terrible about my dad. I kept telling him that it was up to him how long he stayed, work hard and get better then you don't need care. That put all the responsibility right where it belonged, on him. He did work hard and he now lives with his 3 dogs and is happy. The thing was that he had to be able to do it. Me propping him up was not him doing it and I refused to give up my life so he didn't have to do something he didn't want to.

I read time and again on this forum how parents have imposed on their adult children so they didn't have to change anything but they are willing to steal their children's lives for their own selfishness. Please don't be another one that has no life because of a stubborn, selfish, self-centered parent that doesn't care what it costs you to accommodate them and their desire to not have to change.

So sorry about your situation. All the experts told me I needed to put my mother into a nursing home too. But, force me to hirer agency aids. Total 24k a month. After they neglected to order her breathing medicine I pulled her out of there. Put her into a regular apt, with a private aid 24hrs brought my monthly cost down to 9k! My mom thrived for almost 2 years. She was happier with her belongings around her. I lost her Feb 29th. But, I was able to give her a sense of comfort and control over her life. Also, I was able to be with her round the clock at the end. With, the elderly being susceptible to the virus you won't be able to spend time with her. Listen to your gut. I'll pray for you and your family.

Can you say exactly what your apprehension is about? Is it because of COVID-19? If so, everyone can empathize with you but if you are unable to care for her at home, what choice do you have? I bet it’s hard to get volunteers from churches right now too. People are staying isolated as much as possible to avoid spreading and receiving germs.

Sure, it’s easy to say “hire someone” but is that going to be easy to do these days and let’s face it, it is bigger than a one person job, so you would need to hire 2 or 3 people. Could she realistically afford that?

Everything is harder these days. It would certainly be more practical to place someone in a home with a complete staff. Again, that can’t be helped. None of this is your fault and I know that I am not telling you anything that you have not been thinking about yourself. That’s why it is so hard to know what to do.

Are they short on staff? Some nursing homes always have been. I’m sure it is far worse now.

As far as her being manipulative or selfish? The OP has not expressed that being the case. Some people are that way and some are simply scared, fear of the unknown which is completely normal. Transitional times are hard. So, I totally get that you are concerned about how she feels. Anyone with a heart would be concerned.

I am so sorry that you have to deal with this situation at this very difficult time. Having said all of that, as I said before, if you cannot care for her there is nothing else that you can do so please try not to feel guilty. I am sure you are doing the best that you can.

Take care. Be safe. Best wishes to you and your mom.

For dementia-- any dementia which starts out small, turns into a monster, then back to sweet self before going to see Jesus--- REDIRECT-- take her to an assisted living facility that is like an independent living facility-- there are some that have various levels where you graduate up to a memory care unit. My mother thought she was in a fantastic rather expensive hotel--- we finally were able to afford extra nursing in-house care with VA money. Good luck.

My mom had a stroke just before Christmas, she came home on home hospice. Hospice is not just for the last few weeks. They can Provide hospital bed, bed side commode if needed, diapers, bed, her medicines, disposable chucks to protect the sheets and a wheelchair and hoyer lift if needed. This option has allowed me to care for my mom easily at home. I just turned 67. I have no regrets. Once covid is over I can bring my helpers in again. I released them with pay to keep the chance of the virus coming in the house.

Talk to her about continuing care via 'rehab' so she can get strong enough to come home. She will either participate in getting stronger or she won't and that is how you will have to address it with her....'mom, you're just not strong enough yet, so keep doing physical therapy so you can go home'. Since there is also some confusion, even if she has to move to a NH, you don't have to discuss that it is permanent. Just keep encouraging her to work on physical strength.

At least you don't have siblings pushing you in to a difficult situation. Now you have to make a decision - seeing her current needs and level of care, can you physically do it or not.

Can you honestly safely care for her in your home?
Hospice is GREAT and will be a big help but they are not there 24/7. Normally you can ask for a Volunteer that can sit with mom while you run errands or just have some "me" time but Volunteers have been cut back since COVID19.
With Hospice you can get a Hospital bed, supplies and equipment that you need and you will have a Nurse that will come once a week and a CNA that will come 2 maybe 3 times a week to help bathe and dress mom and change the sheets.
The bulk of the work will be done by you or caregivers you hire (mom pays for them if possible with her funds)
You could do a "trial" and give it 3 or 4 weeks to see how thing go but if after the 3 or 4 weeks you feel that you can not SAFELY care for her (and that safety is her safety, your safety both physical and mental) then you can look for a facility that would be a good fit. That might mean Memory Care or a SNF (skilled nursing facility aka Nursing Home)
But you have to be honest with mom and tel her that if it is not working out that she would have to go to a facility where they can meet her needs.
You could talk to the Hospice Social Worker about it and they can help find a facility that would work.
If you decide to not use Hospice then you have to get the equipment into the house before mom is discharged, the Rehab where she is can help arrange that or her Primary doctor. But that also means you will not have the help of a CNA. And the wealth of information that comes with them educating you and the family how best to care for mom.

And that brings me to another question...what does your immediate family think about mom moving in...not just that you could not care for her but that she will be a resident of your household and a lot of your time will be focused on her. And do not count on your brothers for help as they have made their opinion known.

I have a good friend who has had the opportunity to be the care giver for her granda, grandpa, dad and mom. She and her husband lived in the family home. She never complained and took pleasure at helping each one. They all needed help independently but it ran back to back with only a little rest between them. She and her husband planned on finally having a life of their own after her mom passed away. Then before they could vacation or do anything else, her husband of of 46 years got very sick and passed away.

People do not understand why her grief is still so great after 20 months of losing her husband and they are quick to sign her up for 'caregiving' someone else. Her grief is tied deeply to the fact that she lost herself and was looking forward to having a normal life.

I have never met anyone who did caregiving so "patiently, lovingly etc" but it took a toll on her. Ideally, if money is not a problem, keep her in her home. If however, the family's decision is a nursing home - then do all you can to have routine visits and be for her there.

Every family has a different dynamic and a different solution. The reason I told you about my dear friend is that she gave, gave, gave, and gave. Fortunately for her, she has a loving son (married w/kids) and they make sure she is part of their lives.

May you find the direction in which way you go. My daughter told us when I turned 50 to make sure we understood she never had any intention of ever helping us as we got older so don't even think about that. So, she won't experience your anxiety. Take care of her, love her, and spend time with her whatever your decision is. Love goes a long way...............

Unless you are a trained medical professional, you may not be able to care for her at home. Praying for a solution for you.

It is fine that you love and are close to your mother but she obviously has mental and physical problems which are going to get worse and in time will destroy you - is that what you want? She is old. You have the right to live your life now while you still can. I don't know if explaining anything would matter - she sees what she wants to see, right or wrong, so do NOT let that upset you. Put her where she is safe and live so you have a life. That is your ONLY choice.