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I think a lot of people see these kinds of choices as yes or no, which puts them in a more arbitrary mode. I think the more flexible, and more easy to accommodate approach is to re-analyze the situation and think of alternatives. Why and how were decisions made that now apparently seem overwhelming? How can those decisions be revisited and revised?
I wouldn't encourage viewing this as giving up, but rather, as an opportunity to reflect on decisions and evaluate how they can be modified to be more accommodating to all involved. Granted, those are difficult situations and decisions, but giving up may cause a lot of regrets and self recrimination later.
Mid-course (or in this case early course) corrections are a part of life; be kind to yourself while considering the best arrangement and how to provide care for your mother.
Does Mom have a Case Manager to arrange a meeting with? To really examine what care she needs, what you can do/can't to & what services are available?
Some organisations call this a 'trial of care'. It is very hard, this sink or swim approach but it's not about suceeding or failing.. it's about making a sustainable future care plan.
Sometimes with more support services it will work at home. Sometimes a facility setting is needed instead.
If you are new to it, did you get any training? There are many many skills and tricks involved – even how to make the bed with someone in it, is something that takes experience.
One option might be to hire a professional care giver at the times when mother needs special help, and watch to find out how they do all the things that have clearly come as a surprise to you. You could do that straight away, and you might only need it for a few sessions. Both the help and the 'training' might give you a chance to get your second wind.
This is exactly my mother's situation. She is residing in a NH. It would be very difficult to care for her at home. She is lifted in and out each day with a lift. My question is why you have your mother at home now. I understand if there are financial reasons but then she should be eligible for Medicaid or that process should start. This will prove too difficult for you to handle alone if that is the situation. It is not clear how she came to be released. I hope you find the help you need to have her reside where there can be help for her to live while immobile. My mother arrived at this stage after a septic infection. Prior to that she managed in the AL facility next door. This development has been heartbreaking for me.
The primary reason is I live 900 miles from where she was and the conflicting stories about her care, bruises, etc. made it impossible to know what was going on. Even if I do end up settling on NH care here, at least I can visit and hopefully be more in tune with her care. Thank you for sharing your thoughts and questions.
It is not realistic to expect any one person to caregive full time for someone that's immobile.
You state you lack the upper body strength to properly care for her properly. This is normal as well for a single person. You could very easily injure yourself permanently trying. Or injure your mother worse.
74 is fairly young, relatively speaking. She could live over 20 more years.
Caregiving for such a disabled person takes a team, so she'd likely be safer back in the nursing home.
Some THINK they can do it, then gain 60+ pounds, sleep on an air mattress on the floor for 9 months, and finally realize that they were thinking INCORRECTLY, and that they definitely, DEFINITELY CAN’T.
This is a job (maybe or maybe not, “a labor of love”) which never EVER gets easier/better whether you get training, help, an addition to your house, or in my case, another new air mattress (went through 3).
I wanted desperately to “give her a chance” in my perfect-for-physical-limitations house. I could have admitted defeat ONE DAY after she came. My FALSE PRIDE, DEEP LOVE FOR HER, and lack of ANY GUIDANCE at the end of her Medicare rehab period bought me the 9 months of misery I subjected my family to and lived in myself, until my fears about her potential falls deprived me of even the little sleep I was getting on that floor.
She had been so miserable in my home, and BLOSSOMED in a beautiful residence near my home. I grew to know and love the staff there, and they doted on her.
Make your decisions with love, utmost concern for her safety, and a healthy balance for your wellbeing. THEN - be at peace and enjoy becoming her daughter again.
Oh my gosh AnnReid, EXACTLY what I needed to hear this morning! I’m returning my 96yo mom to her ALF next week after having her in our NOT-perfect-for-physical-limitations home (even with modifications), and have been so torn about it. She declined terribly during the isolation at ALF during pandemic, through no fault of the facility - they have done a fantastic job the 2.5 years she’s lived there. But it tugged so hard on my heart that we decided we would make it work in our home. After all, she may only have a short time left, right? However, since she has kept trying to come down the 3 brick steps onto concrete patio without her walker and promises every time that she won’t do it again, then forgets, I have realized it is best for her safety and socialization that she return. Not to mention that in the last 2 months we have butied two elderly relatives due to falls. Although she has improved from the isolated low point, now that restrictions have significantly lifted and visitors can come in, I know she will do better there. Thanking God He is working it all out for her safety, health and mobility, that she will blossom again AND that we can get our lives back. Your words helped change my perspective. Thank you!
Would it be 'wrong' to send your mother to the hospital for being very ill? Of course not. That's the same math as it being 'wrong' for you to have her placed in a long term care setting for being completely dependent and requiring 24/7 care. You, being 1 person, are simply and truthfully not qualified to handle such a situation. The only 'wrong' that happened here was you thinking that you could take on such a gigantic task all by yourself; it's almost impossible without a lot of help, the right equipment, and lots of support from teams of caregivers coming into your home day & night. Not to mention a specialized van to transport her to appointments. Things we don't think of until after we take on such a huge task, right?
Please do NOT beat yourself up for being human, ok?
I am able to take care of my 93 year old mom. My wife helps in the morning. When she moved in from rehab, she was bed bound, had diaper, rash and was on a feeding tube. It took two months of of work to get the rash cured. Two months to get her using a walker and three months to get her swallow approved and the tube removed. After two months, I fianally sleep through the night. That is the only thing I really need is the sleep. Now she is eating me out of house and home and I had to buy a slew of Karen Scott petite large pants and donate a bunch of petite mediums. I would not give up if I were you.
Are you caring for your mother in your home after she was in the nursing home for three months. Was she completely dependent when she went in and was wheelchair bound. You are going to need help in the home.
I too have no upper body strength and being 5ft tall no leverage. You are going to hurt yourself trying to care for this women. I assume she is dead weight. Were you told she was 24/7 care and what was needed to care for her? Personally, I may have made arrangements to have her stay in the NH. Because at 65 I knew my limitations physically.
Thomas is a man with upper body strength with a wife who helps. Seems he is one determined person. Seems Mom may be too. You need to make a decision if you can do this not so much u want to.
I was not told she needed that kind of care. What I was told was that she had voluntarily checked herself in and she could check herself out. The nursing home did not give me the full story but to be fair, neither did my mom. She wanted out so bad that (I now realize) she exaggerated what she could do. My reality set hours after I stepped off the plane. I just really didn't know what to do, so I agreed to her request and brought her home. Thank you so much for sharing your thoughts.
Consider that there were three shifts of trained caregivers working as teams, with a great deal of specialized equipment to assist them. Most were probably younger and stronger. They had training in techniques of how to handle a mobility-limited person. They could call for help. They had good nights sleep and rest breaks.
You’re taking this all on alone.
Recognition of reality is not failure. A noble heart and willing spirit is not always enough.
No, it's not wrong to want to give up. You are trying to handled an immobile person by yourself W/O any training or help which makes it virtually impossible. You are dealing with burnout after just 2 days. If you are unable to arrange for any help I would suggest placement for your mom for her health as well as yours. She needs to be turned every 2-3 hours, cleaned when soiled, avoid bedsores, bed baths, feeding, etc. When are you going to find time to eat, sleep, care for yourself, have a life of your own, & avoid injuries to yourself & possibly her also. If it seems overwhelming to you now after just 2 days, realize what it'll be like after a couple of weeks. Be realistic, take time to think of what you want vs. what's best for your mom. Speak with others who have been in this situation. You can always visit your mom & provide the nice things for her like painting her nails or just brushing her hair. Praying for peace with your decision. 🙏
Yes, thank you so much. I am being diligent in keeping her clean and turned, and watching A LOT of YouTube. It is a lot for one person and I am more than thankful for a support team around me. Thank you again!
No, it is not wrong for you to give up after only two days. The nursing home is the one who is wrong, not you. They should have NEVER released a person in your mother's condition to the care of a person with zero training and into a residence that is not equipped for it. They are the one who is wrong. Your mom is completely dependent and also paralyzed. How did they expect you to properly care for her? I've been a professional in-home caregiver for 25 years and a case like this would be challenging for me and I've worked more of these then I can remember. In fact, I'd even think twice about even taking it on. If you're serious about keeping her home you need serious help. Not some social worker willing to come and give you a hug and tell you what a great job you're doing. Your mother's primary care doctor will write the order for her to have visiting nurse care. When nursing comes, aide care does too. The aide care will be more useful to you and your mother. Insurance will pay for some of it, but you may have to hire and experienced CNA to give more services and you'll have to pay for that. Use a caregiver website to find a private one you can negotiate the pay with.
I thought the same thing... I honestly couldn't believe she was discharged of her own free will. I am learning a lot. Thank you for the advice. I am looking into everything and anything available.
Newtothis, I learned my lesson early on - before any discharge to home, whether SNF or hospital, you gotta have the Homehealth services set up to where they come evaluate the NEXT DAY. Also, don't let the facility discharge on Thursdays, Fridays or over weekends - nightmare getting home services started. The first time I took Mom home, it was a double whammy - Friday afternoon and no services set up. TWO days of hell, and she fell (not injured because I broke her fall and swung her onto the bed), was miserable and had to go right back into the hospital. In fact, Homehealth came out that next Tuesday (make that 4 days of hell), and told me she was not safe at home with just me and she needed more than Homehealth could provide.
It's all a learning process. This forum is a great source. If you have friends who've been through this, use their knowledge. ALWAYS work with the facility social worker/case manager to set up things before discharge - whether to home or the next step down. TELL them what you can do and what you can't do. They should ask about home equipment and needs AND get that setup for you or write the orders for it and contact a company who will either just show up with a delivery or will contact you immediately to schedule delivery.
Also, contact your Mom's insurance and ask if they have an after discharge meal plan. My Mom's insurance will deliver 2 weeks worth of your preferred meal (breakfast, lunch or dinner) for free. Helps a lot when you're too exhausted to cook or need a break and can just pop it in the microwave and serve a healthy meal.
It is overwhelming at first. I agree with others that some can't do this at all, but it's your decision. You will need organization and time management skills for starters. You will need help!!!
Don't feel bad about wanting to give up after 2 days. Reasses the situation. Maybe Mom needs to go back to the hospital or SNF while you figure this out. Also, talk with your Mom; what does she want to do? What are her wishes? Factor that into the equation along with your abilities and capacity to handle this long term.
Hope this helps. You are not alone. I'm pretty sure we've all been there and have felt the same at one point or more.
Thank you so much. We basically took her from the nursing home and got on a plane the next day. I honestly had no idea how much she had declined... it might be hard for some to believe, but trying to monitor and maintain care from several states away results in conflicting stories. Thank you SO much for your encouraging words.
My mother stayed in her home for 10 years after father passed. She was isolated, had only 1 friend to visit, refused to move to alf near brother or myself - we both live in other states- we constantly worried about her. She had a fall and ended up in hospital with minor injuries. I found a terrific facility for her and I drove her there straight from hospital. She has loved every minute of it. She jokes with the nurses, has special friends and has gained weight since she moved in. She has been there 3 years and just turned 90. What a huge weight lifted from our shoulders
Yes, my mom has been alone since my dad passed in 2014, refusing to move. Her health issues have been snowballing since December and it was only out of her extreme displeasure in a nursing home that she agreed to move several states away . I am hoping to find something that we are both happy with... either help in the home or another facility. Thank you for sharing your thoughts.
It's not at all wrong to feel like giving up after only 2 full days (or 2 full hours, come to that).
Only, I wonder - is it because you're panicking, or because you had no idea what you were letting yourself in for, or because the work is more strenuous (or more disgusting!) than you realised, or...?
The reason it makes a difference is that, depending on what's wrong, you might feel better about it by the end of the week - or not.
Is the impaired mobility permanent? Do you have any equipment, have you been shown how to use it, has anyone offered training of any description..?
It's a labor of love. Does your Mom also have 60 days of physical therapy, occupational therapy and a nurse that can come twice a week? Those services are very helpful. They will train you and make helpful suggestions. Watch what the home nurse and therapists are doing.
You need to take care of yourself and get sleep, so I would find a home health agency for extra help. The first month or two is the hardest and hopefully things will start to improve. I think it is worth trying.
Oh my gosh, I am convinced that no one has any idea how much work it is being a full time caregiver until they have done it. I know that I didn’t!
We take on this responsibility for a variety of reasons. It becomes overwhelming. I am proud of you for recognizing your limitations and for being completely honest about it. BRAVO!
Oh please, so many of us plow through in denial saying to ourselves, “We can do it. We have to do it. It’s my responsibility to do it!” Nonsense!
The truth is, we can only do so much. I feel your pain. I was once in your shoes, so I understand. It’s the toughest job that I ever had, emotionally and physically.
Never tell yourself that you failed as a caregiver. It’s an impossible job that is too big for one person. DO NOT make the same mistake that I and many others have made by continuing to do the caregiving for years! It’s a difficult job to handle on your own. Do you have any outside help? Please call Council on Aging for an assessment. You can also speak to a social worker to help plan for her care.
I could have not said it any better, I agree with you 150%. I am helping my dad, now on AL MC and for the 1st time in 3 years I have been able to reclaim my life and by proxy my husband's life. It is overwhelming, all consuming and draining for 1 person.
I am so sorry - most people could not and many would not be able to handle this. Remember this, although you might like to do this or that, no every person is able to do certain jobs but we can do well at other things. I love business and handling it but from a technical standpoint, I am lucky I can put a plug in the wall. I don't know your situation in life but I think this is a scenario you should try to handle. Either find a caretaker or face the fact she needs more care and needs to be placed. I would go insane too if I was facing this monumental task. Don't feel guilty.
Thank you. To be fair, I was so confident in assuming the role as her caregiver that I quit my teaching job of 20 years. Family members were/are convinced that I would do well with my mom and I want to.... but her health has declined rapidly since all this was first set in motion. I was completely overwhelmed when I flew her 900 miles to my home. I appreciate your wisdom and words of advice.
"On this forum to hopefully discover I am not alone."
Most definitely you are NOT alone!
I would say it's not so much as giving up as coming to realization that you are in over your head. Not surprising that the NH didn't really set you up for success!
Anyone who takes on the role of primary caregiver does it for a variety of reasons: They don't like NHs. There's no money for NHs. They think they can do it.
In my mother's case, it was dementia. She was still mobile and could feed herself, etc, but wasn't safe being alone in her place. I knew nothing about dementia before that, and based on what I learned while trying to "take care of things" for her, I knew that there was no way I could provide the hands-on care. The primary issue was her weight. Secondary was my own physical limitations. In addition, there were logistics issues and the fact that she can be incredibly stubborn and difficult. Thankfully she had some assets and a condo we could sell to cover the cost of MC.
If your mother has any assets, they should be used to hire help. You should NOT be trying to lift her yourself. If you get injured, who will take care of the 2 of you? If there are no assets, she would likely be able to get Medicaid. In general, Medicaid is only for NHs and she would need to qualify for NH care as well. A few states do also cover AL in some cases, but even when they do, the number of places are limited and the waiting periods long. HOWEVER, if her income is low enough to qualify for Medicaid, they do provide limited in home care-givers. You should explore that.
While exploring Medicaid, check out care-giving agencies in your area. Find out the rates and if they will send someone to do assessment of needs first. Keep in mind that if the aides sent are not up to snuff, you can request others OR change agencies. Sometimes it takes time to find the right fit. If you have no POA, you can request to become Rep Payee for her SS. This would give you control over the funds and allow you to use them to pay for help. You do need to keep good records and report yearly, but if only used to bring in help, that should be a snap.
Was this condition pre-existing or the result of a medical issue? Is there any hope of recovering some usage? If yes, get the doctor(s) to order in-home OT/PT.
Again, first item on the to-do list is to hire some help, ASAP! Once you have assistance in the home, then you can work on figuring out how to proceed from there.
Assuming your mother has, at least, SS income - use it towards in-home assistance for her care. You're going to hurt yourself trying to lift her for transfers from bed to chair, etc. If she had a home prior to the NH, sell it unless it is the home you live in as well. If you can sell it, keep track of every penny you spend from that sale in the event she has to return to a NH and Medicaid is needed to pay for the bed.
Also purchase the equipment you need for her care. A lift is the first thing you need to get if you can. You might talk to her doctor to see if a lift can be ordered for Medicare to pay for it. They also make a lift for the bathtub - might be kind of difficult to get her in it if she can't stand at all to transfer from a wheelchair to the lift chair. Just look at some to see if she could manage one of the many that are out there. Again, ask dr about ordering one through a equipment store that is recognized by Medicare for durable equipment (not all are and payment will be denied). I bought a Probath chair and it was worth every cent: https://www.myhomeforlife.com/Pro-Bath-Chair-Lift-p/1099.htm You can see what it looks like. If your interested, call Kelli - she took over the sales from the man who designed this chair. Buy direct from her.
Amazon Prime became my new best friend. Walmart and Target too. I order anything I need as soon as I think of it. Puppy pads to line the bed. Arthritis tylenol. Stretchy pants. Urinals. A rollator. An alexa echo. Coffee. Even a 10 foot long foldable ramp. You need the tools to do the job! Might not be affordable for everyone, but you can at least get ideas and prices and go from there. Actually I am ahead on savings, since the ramps I bought were so much cheaper than having them built, and they are portable, so I took them in when it snowed, and when we don't need them.
yes, I think it is wrong to want to give up after 2 days. your parent didn't give up on you nor should u. I know its hard but if you let go and Let God. He will help u prevail. stick it out like she did you. I promise u this will get better. Do something for yourself. Smile.
It's wonderful that you want to do this, but are you capable of handling this by yourself? My mother is in memory care and it sometimes takes 2 people to lift her out of bed into a wheel chair safely, and she is tiny and weighs less than 100 lbs. She has advanced dementia and cannot feed herself. She needs assistance with bathing and dressing. You can get an aide, or if she has many needs, she may need to be in a facility where professionals will be caring for her.
The first few days are the WORST! That's because everything is new to you and all your fears about what could happen have happened. You don't know how to turn the person, you don't know how to change a diaper, you don't know how to feed the person. All this and though the promise of an aide is made, often that aide won't get there for nearly a week. It's enough to make you want to go screaming into the night as if your hair is on fire. We GET IT! It may be that you won't be able to do this in the long run, it may be that you will. But first, take a breath. You will survive this; it may not be what you like or what you want, ut you will survive it. And your patient, your mom, will survive it too. Let's get a nurse in to have a look at her and suggest what you may need. I would start with stocking up on diapers/moist wipes/and absorbent pads for place beneath her so that you're not changing sheets every other minute. Have a chat with mom and see if she can help move herself a tiny bit to facilitate moving her in bed (yes, I know, since her legs don't work, it's going to be tough). You can do this....just for a minute, an hour, or a day. We are only a keyboard away.
I suspect that you already knew this was not a good idea, and the two days has simply sealed what you already knew would be the case. We often think that we can do it if we only try. The truth is that we all have our limitations. I have always known that I could not do in home caregiving, and so I never tried. Some feel so obligated that they go ahead and try. No, it isn't wrong if you know you cannot do this. In fact, attempting to do it will only make it more difficult when you finally understand that you cannot, and will make the adjustment of the person you love all the more hard. I wish you the best.
When I agreed to do this, she was somewhat mobile. It's hard to truly understand the situation when 900 miles separated us... I was honestly shocked at the decline. So, I really thought I could do it- and am still doing it. I guess what I am saying is that had I fully grasped what the reality would be, I (think) I could have been better prepared. Thank you for the feedback.
Have you found the path forward that works for everyone involved?
My dad was completely mobile and incontinent. I bawled like a baby after 2 days and knew that I would never be able to give him the care that he required without endangering my own wellbeing. I felt sick that I couldn't help in the way that he wanted but, I couldn't and I knew that we would both be better off if I could do enrichment activities, doctor appointments and other things and let somebody else deal with the 5 extra loads of laundry daily and feeding him and cleaning up after him.
The sad part was that he would wear adult incontinence products when he was living somewhere else because he didn't want them to know, yet refused to in my home because he didn't have a problem. Okay...that is why you have to live some place else.
I found that he did soooooooooo much better living in a place that made him aware of his situation. As difficult as it is, it is far better than burning yourself to the ground to prop them up. Do not let anyone guilt you into doing this if you feel like you can't. It is okay to cry uncle and change the situation. It has to work for everyone or it doesn't work.
I just read your comment about you thinking you should have been better prepared. You should have. We ALL should have been!! It is something that is impossible to be prepared for, you have to go through it to know what you should have been doing to prepare. I have been in this a year and I remember the first part was so terrible but you get used to it. I am not saying you should resign yourself to getting used to it though. Something I wish I had done from the word go is try to find ways to make it easier, find things to look forward to every day, find things that make you laugh and find ways to still be an individual._( Last one is most important) Do not let this define who you are.. . look for as much help as you can get. Oh and , you will get a lot of support here but disregard the few guilt trippers who will try to make you feel less than or selfish. You have already proven you are neither of these things just by trying to do this.
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I wouldn't encourage viewing this as giving up, but rather, as an opportunity to reflect on decisions and evaluate how they can be modified to be more accommodating to all involved. Granted, those are difficult situations and decisions, but giving up may cause a lot of regrets and self recrimination later.
Mid-course (or in this case early course) corrections are a part of life; be kind to yourself while considering the best arrangement and how to provide care for your mother.
Does Mom have a Case Manager to arrange a meeting with? To really examine what care she needs, what you can do/can't to & what services are available?
Some organisations call this a 'trial of care'. It is very hard, this sink or swim approach but it's not about suceeding or failing.. it's about making a sustainable future care plan.
Sometimes with more support services it will work at home. Sometimes a facility setting is needed instead.
You are right to speak up early.
One option might be to hire a professional care giver at the times when mother needs special help, and watch to find out how they do all the things that have clearly come as a surprise to you. You could do that straight away, and you might only need it for a few sessions. Both the help and the 'training' might give you a chance to get your second wind.
You state you lack the upper body strength to properly care for her properly. This is normal as well for a single person. You could very easily injure yourself permanently trying. Or injure your mother worse.
74 is fairly young, relatively speaking. She could live over 20 more years.
Caregiving for such a disabled person takes a team, so she'd likely be safer back in the nursing home.
Some people can do it, and SOME CAN’T.
Some THINK they can do it, then gain 60+ pounds, sleep on an air mattress on the floor for 9 months, and finally realize that they were thinking INCORRECTLY, and that they definitely, DEFINITELY CAN’T.
This is a job (maybe or maybe not, “a labor of love”) which never EVER gets easier/better whether you get training, help, an addition to your house, or in my case, another new air mattress (went through 3).
I wanted desperately to “give her a chance” in my perfect-for-physical-limitations house. I could have admitted defeat ONE DAY after she came. My FALSE PRIDE, DEEP LOVE FOR HER, and lack of ANY GUIDANCE at the end of her Medicare rehab period bought me the 9 months of misery I subjected my family to and lived in myself, until my fears about her potential falls deprived me of even the little sleep I was getting on that floor.
She had been so miserable in my home, and BLOSSOMED in a beautiful residence
near my home. I grew to know and love the staff there, and they doted on her.
Make your decisions with love, utmost concern for her safety, and a healthy balance for your wellbeing. THEN - be at peace and enjoy becoming her daughter again.
Please do NOT beat yourself up for being human, ok?
My wife helps in the morning.
When she moved in from rehab, she was bed bound, had diaper, rash and was on a feeding tube.
It took two months of of work to get the rash cured. Two months to get her using a walker and three months to get her swallow approved and the tube removed. After two months, I fianally sleep through the night. That is the only thing I really need is the sleep. Now she is eating me out of house and home and I had to buy a slew of Karen Scott petite large pants and donate a bunch of petite mediums. I would not give up if I were you.
Thomas is a man with upper body strength with a wife who helps. Seems he is one determined person. Seems Mom may be too. You need to make a decision if you can do this not so much u want to.
You’re taking this all on alone.
Recognition of reality is not failure. A noble heart and willing spirit is not always enough.
The nursing home is the one who is wrong, not you. They should have NEVER released a person in your mother's condition to the care of a person with zero training and into a residence that is not equipped for it. They are the one who is wrong.
Your mom is completely dependent and also paralyzed. How did they expect you to properly care for her?
I've been a professional in-home caregiver for 25 years and a case like this would be challenging for me and I've worked more of these then I can remember. In fact, I'd even think twice about even taking it on.
If you're serious about keeping her home you need serious help. Not some social worker willing to come and give you a hug and tell you what a great job you're doing.
Your mother's primary care doctor will write the order for her to have visiting nurse care. When nursing comes, aide care does too. The aide care will be more useful to you and your mother.
Insurance will pay for some of it, but you may have to hire and experienced CNA to give more services and you'll have to pay for that. Use a caregiver website to find a private one you can negotiate the pay with.
It's all a learning process. This forum is a great source. If you have friends who've been through this, use their knowledge. ALWAYS work with the facility social worker/case manager to set up things before discharge - whether to home or the next step down. TELL them what you can do and what you can't do. They should ask about home equipment and needs AND get that setup for you or write the orders for it and contact a company who will either just show up with a delivery or will contact you immediately to schedule delivery.
Also, contact your Mom's insurance and ask if they have an after discharge meal plan. My Mom's insurance will deliver 2 weeks worth of your preferred meal (breakfast, lunch or dinner) for free. Helps a lot when you're too exhausted to cook or need a break and can just pop it in the microwave and serve a healthy meal.
It is overwhelming at first. I agree with others that some can't do this at all, but it's your decision. You will need organization and time management skills for starters. You will need help!!!
Don't feel bad about wanting to give up after 2 days. Reasses the situation. Maybe Mom needs to go back to the hospital or SNF while you figure this out. Also, talk with your Mom; what does she want to do? What are her wishes? Factor that into the equation along with your abilities and capacity to handle this long term.
Hope this helps. You are not alone. I'm pretty sure we've all been there and have felt the same at one point or more.
Only, I wonder - is it because you're panicking, or because you had no idea what you were letting yourself in for, or because the work is more strenuous (or more disgusting!) than you realised, or...?
The reason it makes a difference is that, depending on what's wrong, you might feel better about it by the end of the week - or not.
Is the impaired mobility permanent? Do you have any equipment, have you been shown how to use it, has anyone offered training of any description..?
Does your Mom also have 60 days of physical therapy, occupational therapy and a nurse that can come twice a week? Those services are very helpful.
They will train you and make helpful suggestions.
Watch what the home nurse and therapists are doing.
You need to take care of yourself and get sleep, so I would find a home health agency for extra help.
The first month or two is the hardest and hopefully things will start to improve.
I think it is worth trying.
We take on this responsibility for a variety of reasons. It becomes overwhelming. I am proud of you for recognizing your limitations and for being completely honest about it. BRAVO!
Oh please, so many of us plow through in denial saying to ourselves, “We can do it. We have to do it. It’s my responsibility to do it!” Nonsense!
The truth is, we can only do so much. I feel your pain. I was once in your shoes, so I understand. It’s the toughest job that I ever had, emotionally and physically.
Never tell yourself that you failed as a caregiver. It’s an impossible job that is too big for one person. DO NOT make the same mistake that I and many others have made by continuing to do the caregiving for years! It’s a difficult job to handle on your own. Do you have any outside help? Please call Council on Aging for an assessment. You can also speak to a social worker to help plan for her care.
Wishing you all the best. Take care.
I could have not said it any better, I agree with you 150%. I am helping my dad, now on AL MC and for the 1st time in 3 years I have been able to reclaim my life and by proxy my husband's life. It is overwhelming, all consuming and draining for 1 person.
"On this forum to hopefully discover I am not alone."
Most definitely you are NOT alone!
I would say it's not so much as giving up as coming to realization that you are in over your head. Not surprising that the NH didn't really set you up for success!
Anyone who takes on the role of primary caregiver does it for a variety of reasons:
They don't like NHs.
There's no money for NHs.
They think they can do it.
In my mother's case, it was dementia. She was still mobile and could feed herself, etc, but wasn't safe being alone in her place. I knew nothing about dementia before that, and based on what I learned while trying to "take care of things" for her, I knew that there was no way I could provide the hands-on care. The primary issue was her weight. Secondary was my own physical limitations. In addition, there were logistics issues and the fact that she can be incredibly stubborn and difficult. Thankfully she had some assets and a condo we could sell to cover the cost of MC.
If your mother has any assets, they should be used to hire help. You should NOT be trying to lift her yourself. If you get injured, who will take care of the 2 of you? If there are no assets, she would likely be able to get Medicaid. In general, Medicaid is only for NHs and she would need to qualify for NH care as well. A few states do also cover AL in some cases, but even when they do, the number of places are limited and the waiting periods long. HOWEVER, if her income is low enough to qualify for Medicaid, they do provide limited in home care-givers. You should explore that.
While exploring Medicaid, check out care-giving agencies in your area. Find out the rates and if they will send someone to do assessment of needs first. Keep in mind that if the aides sent are not up to snuff, you can request others OR change agencies. Sometimes it takes time to find the right fit. If you have no POA, you can request to become Rep Payee for her SS. This would give you control over the funds and allow you to use them to pay for help. You do need to keep good records and report yearly, but if only used to bring in help, that should be a snap.
Was this condition pre-existing or the result of a medical issue? Is there any hope of recovering some usage? If yes, get the doctor(s) to order in-home OT/PT.
Again, first item on the to-do list is to hire some help, ASAP! Once you have assistance in the home, then you can work on figuring out how to proceed from there.
Also purchase the equipment you need for her care. A lift is the first thing you need to get if you can. You might talk to her doctor to see if a lift can be ordered for Medicare to pay for it. They also make a lift for the bathtub - might be kind of difficult to get her in it if she can't stand at all to transfer from a wheelchair to the lift chair. Just look at some to see if she could manage one of the many that are out there. Again, ask dr about ordering one through a equipment store that is recognized by Medicare for durable equipment (not all are and payment will be denied). I bought a Probath chair and it was worth every cent: https://www.myhomeforlife.com/Pro-Bath-Chair-Lift-p/1099.htm You can see what it looks like. If your interested, call Kelli - she took over the sales from the man who designed this chair. Buy direct from her.
Have you found the path forward that works for everyone involved?
My dad was completely mobile and incontinent. I bawled like a baby after 2 days and knew that I would never be able to give him the care that he required without endangering my own wellbeing. I felt sick that I couldn't help in the way that he wanted but, I couldn't and I knew that we would both be better off if I could do enrichment activities, doctor appointments and other things and let somebody else deal with the 5 extra loads of laundry daily and feeding him and cleaning up after him.
The sad part was that he would wear adult incontinence products when he was living somewhere else because he didn't want them to know, yet refused to in my home because he didn't have a problem. Okay...that is why you have to live some place else.
I found that he did soooooooooo much better living in a place that made him aware of his situation. As difficult as it is, it is far better than burning yourself to the ground to prop them up. Do not let anyone guilt you into doing this if you feel like you can't. It is okay to cry uncle and change the situation. It has to work for everyone or it doesn't work.
I have been in this a year and I remember the first part was so terrible but you get used to it. I am not saying you should resign yourself to getting used to it though. Something I wish I had done from the word go is try to find ways to make it easier, find things to look forward to every day, find things that make you laugh and find ways to still be an individual._( Last one is most important) Do not let this define who you are.. . look for as much help as you can get.
Oh and , you will get a lot of support here but disregard the few guilt trippers who will try to make you feel less than or selfish. You have already proven you are neither of these things just by trying to do this.