I need help. I'm considering taking in my mother who needs 24 hour care, and I need to get a real picture of what I'd be taking on.

Mom had a succession of strokes through the last 8 years that have left her in a wheelchair. She is also diabetic and her neuropathy has worsened over this time. 8 years ago I didn't even consider taking her in. I was newly married, new in my career and intended to live my life.
Its been a really good 8 years for me. I'm in a good job I like, have a strong marriage and have done things I enjoy, mostly traveling and making friends through gaming and volunteering. Mom's spent that time in a NH. She's generally a cheerful person, and I was able to visit her (3 hours away) often, take her shopping and out to eat, and talk to her on the phone weekly.
Last spring she worsened considerably, lost enough strength to transfer into a car and lost her speech. No more shopping trips or phone calls. Then covid happened... now theres not even any visits.
When the first case hit her NH she called me crying and then I started crying too. I was so scared. I was ready to go take her home and damn the consequences.
But I'm not that rash.
I started researching and learned some about the waiver program that would get us a home health aide. I have talked to her nurses and social worker about the practical stuff. I know I'd be toileting her and meds 4x a day and pureeing her food etc etc. But what no one so far has been able to answer is... what's it really like to be a caregiver?
Will I really be able to do this and work FT? Will my marriage suffer? What if i do it for a year and can't anymore? Will my friends stop hanging out with me when I have to work around mom's needs? Will I run out of non caregiver conversational topics? What if I need to leave town? (My father is also elderly and as are my inlaws, all out of town.) How do I take care of me? Am I crazy? If I don't do this, can I live with the guilt? Is that a good enough reason to do it?
... I'm scared to do this, but it feels like I should. How do I decide?

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I honestly believe you already understand you cannot do this, have a job and a stable marriage. I think you know it deep in yourself. Yes, face this head on. Your mother may actually get covid-19. She either will survive it or she will not. But the fact is not everything can be fixed and not everything can be made safe. An aid who comes in will be working with others. She could as easily bring in covid-19 as the NH could.
If your Mother does get covid and does not survive it, then she becomes one of 160,000 so far in our country to have died of a pandemic. For you to give up job, marriage, and all else on the CHANCE that you can save this situation? Well, that decision is now in your hands. If something happens to Mom in NH you will think you can have prevented it. If YOU get it at work and bring it home to Mom in your home you will think it could have been prevented. If your Aid brings it in to Mom in your home then you will hold yourself responsible. Most of our lives are truly in less of our own control than we imagine. I know Mom's facility is living in fear as well, their workers and their patients. Just as you are. There is no certainty now and no way to make things certain.
I am so sorry. You know deep in your heart you likely cannot do this without GREAT risk to yourself; and that is the truth. And you know deep in your heart that your Mom is now at great risk (as are we all of a certain age; make no mistake. I am 78 and my daughter and I have updated one another on where this is and what should be done about that).
Please carry on with the life you have, which you love. And do the best you can by your Mom. These are horrific trying times for us all.
I can only tell you that I would not do it. And I would not want my daughter to do it for me; in fact, now, in all my right mind, I would forbid it outright. She has a right to her life. She is 58 to my 78. God forbid she risk the free-est years of her own life, children raised, to take me on. God forbid that. I have had my life. I am ready to go. I won't even be taking up a ventilator. It is all in writing. Give me the good drugs now; I have already had the good life.
Helpful Answer (8)
Reply to AlvaDeer
froggoddess Aug 8, 2020
Thank you for your honest answer AlvaDeer. You know, I don't know that I do know deep down that I can't/ shouldn't. My base feeling is that I should. But I know that comes from a place of fear. Of her death yes but maybe even more of my own guilt. Mom always said she's rather die than go to a NH. And she worked in one.
And of course, I have fear on both sides. Thats why I was reaching out... hoping to hear from people who've been there the real story on all the stuff I worry about.
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You’re living in fantasy land if you think any part of your life will remain the same. Leave her where she is ..please! Take it from a daughter who took her mother out of SNF 3 years & 5 months ago...thinking it probably would be a year at most.... my mother is 93 dementia, immobile, incontinent. I transfer her by lift machine. I change her diapers, I’ve done wound care. Forget about your career or marriage. Friends will disappear. Do you have children? Mother will start hitting & cursing them. She’ll accuse you of trying to poison her. You have to have hospital bed, wheelchair, cushions, lift machine, plenty of diapers, chucks, A&D ointment, etc. Forget about vacations or going out of town. You’re lucky if you can get out of house for an hour! If you have private pay aide, that time is used to buy food & supplies & banking. Don’t count on any siblings to help. They will just call you when they say that they are going on vacation..
.Nursing home staff told me she would get worse... they were right. DON’T TAKE HER HOME unless you want to kill yourself. Hugs 🤗
Helpful Answer (6)
Reply to CaregiverL
NobodyGetsIt Aug 10, 2020
Dear "CaregiverL,"

Very well said - I'd say you pretty much "nailed" it on the head and there's no way of sugarcoating any of it.

My hat is off to you in all that you are doing as well as enduring!
What it's really like is will go crazy. If she needs 24 hour care, she needs 24 hour care. You will not be able to do this on your own. And even if you can get daytime hour help, you will still be a prisoner in your own home. There will be no private time for you or your husband. I wish I had found this group before we took my mother in law in to live with us. I thought it would work and we could give her what she needs. We have given so much there is barely anything left for us. Please, if you have doubts about if you can do it now, you have answered your own question. And don't feel guilty. You will still be taking care of your mother, just not in your home.
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Reply to IhaveQuestions
froggoddess Aug 11, 2020
This might sound like a dumb question but... why no private time? That's one of the things that staff at her NH have failed to answer properly. I know that she doesn't have someone in her NH room with her 24 hours. So she can be alone for stretches of time (if not alone in the house.) But I don't know how long.
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Have you had children? If so, remember the feeling of having a newborn for the first time, and how s/he would always be there, day in and day out, and how there was no escape? That feeling of 'now my lifestyle is over' kind of thing. I remember it distinctly and my first child was born in 1985.

If you take in your mother at 70 years old, it would be similar, except add 100+ lbs to the newborn size, adult elimination to the diapers, bathing a full grown adult, and about 25 other health conditions you know nothing about into the mix. You may have her living with you for 20 years, mother is 93.5 and going strong living in a Memory Care ALF with more issues than Newsweek. The staff over there, however, know how to deal with her issues AND with her personality, which is more than I can say for myself. Not to mention her doctor makes weekly visits into the ALF and prescribes medications that the ALF then orders and has delivered and which they then administer to my mother. And those meds continuously change. That's just one tiny example of what's done FOR her over there that I'd have to take on over here, should I take leave of my senses and decide to have her come live with me. I'd also have to cook 3 hot meals a day, which I never do, and provide 3 healthy snacks, entertainment, and some sort of companionship for her which I wouldn't have time for. I don't have that high of a pain tolerance, I'm afraid, so it's out of the question. Plus, my mother has bad neuropathy herself and is wheelchair bound. Just THAT one issue ALONE is nearly impossible to deal with; she is 190 lbs of dead weight and there is no way I'd be able to help her back and forth to the bathroom all day long and in/out of bed which they almost need a Hoyer lift to accomplish. I have a bad back. And I also have things to do during the day that would take me away from care giving 24/7, even if I wanted to do it, which I don't. I'm not capable, frankly, are you? That is the question to ask yourself: are you a nurse? Do you have the qualifications necessary to administer to a diabetic woman with neuropathy and a host of other issues?

Then there's the question of the marriage. I can tell you that my marriage has suffered WITHOUT my mother living inside my home. I got married 2 years before my parents moved here to be closer to me, their only child. As soon as they got here, all hell broke loose and my new marriage became strained under all the new obligations thrust upon me. Here it is, 9 years later, and things have only gotten MORE strained with my mother's deterioration and 6 moves which all fell on my DHs shoulders. It's a lot, even when they don't live in our homes. Expecting your marriage NOT to suffer and/or expecting there to be 'privacy' in your home is unrealistic. Not when you have someone living with you and needing your attention constantly, just like a newborn baby, but with adult needs which are even greater.

As the virus weakens throughout the country, restrictions seem to be easing up rather than tightening up in the residential care industry. That's what I've seen at my mom's place & what you'll likely see at your mom's place too. This too shall pass. Don't let guilt be the driving force behind your decision making process here.

Your best bet is to do A LOT of reading on this website. A lot. Only then can you begin to understand what care givers really go through with their aged parents on a daily basis. And you still can't really feel it; you can only absorb the information with your mind. Until you actually live with an elder 24/7 inside your home, you won't be able to understand the full magnitude of what you've signed up for.

And that, I'm afraid, is the real truth of the matter.

Wishing you the very best of luck making a tough decision. Sending you a hug and prayer for peace, either way
Helpful Answer (5)
Reply to lealonnie1
NobodyGetsIt Aug 11, 2020
"lealonnie1," ...more issues than Newsweek - thanks for the chuckle, I needed that one! (good comment too)
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Dear "froggoddess,"

You asked "what's it really like to be a caregiver?" It's a full-time job! Yet, you already have one and a good one at that. If you were to keep your job, both your job and your caregiving "job" would suffer in varying degrees. You have to remember while you're at work, you could get a call regarding your mom and then you'll have to make a decision whether to leave at that moment or "wait" until after work but, I bet if you did the latter you'd be thinking about it all day.

Will your marriage suffer? Yes, even if you have a "strong" 8-year marriage. Remember, it will affect both of you. I've been married almost 23 years and it's been very stressful on our marriage even though my 95-year old mother with Alzheimer's is in a facility in their memory care unit with hospice. She previously lived in an ALF until she nearly died in her apartment from severe dehydration and COVID. My husband had to take a six-week medical leave of absence from his job of 27 years just to deal with the stress and trying to help me with helping my mom. With that, he was concerned about losing his job.

I started caregiving in 2004 when my dad was diagnosed with Pancreatic Cancer. After he passed away, I watched over my mom for ten years running back and forth between our house and hers until I couldn't do it anymore. She was 89 by then and was diagnosed with Alzheimer's.

Friends? Depends on your friends, I actually had to let go of two friends - one who I've known for 27 years and the other one 5. Why? because there was minimal effort on their part to keep the friendship going - I was having to do the majority of keeping in touch. With that, I would get no reply especially, when something major happened i.e. my mom being near death. They both let enough time lapse before texting me and didn't say a word. I was there for both of them when they went through rough patches even though I had my own. I don't have time to play mind games with people as it was the good old "push/pull" routine.

Leave town? Regardless of the reason for needing or wanting to - it's tough. My husband and I haven't had a real vacation in 8-10 years (we have an elderly dog who is nearly deaf so lately that's part of the equation for us).

I'm the only child and her five surviving siblings are all in other states, aren't involved in her care and don't support my husband and I. So, I am in charge of everything from receiving all her mail/bills/handle her finances, (prior to COVID) taking her to appointments, out to lunch so she wasn't stuck in her ALF, phone calls dealing with so many different issues, constant battling with the facility - things they were doing/not doing and it's never ending!

Oh, and we can't forget our own health - mine suffered greatly as most others have too! What will you do for yourself in terms of taking care of you? I was 41 when all of this started and I'm almost 58 now - I've watched my life pass before my eyes. Those prime years are all behind me now and I can't get them back.

I do understand all your fears, I've had them too. A lot of us, if not all, at one time or another go through "guilt," the "would of, should of, could of's," the constant "worrying" - yet in the end as "AlvaDeer" mentioned we don't have the amount of control that we think we do or want to have. Things are going to "happen" in spite of trying to make sure they don't! It's because we love/care about someone - if that weren't the case we wouldn't bend over backwards to force our own will/control over any given situation!

How do you decide? If after reading the comments, you still don't know what to do sometimes getting our thoughts on paper helps. Write a pros and cons list. Our gut instincts/intuition is usually very helpful. "Try on" the decisions you're torn about in your mind - do you get a sense of "calm" or "peace" with one over the other?

I know it's a lot to absorb but, just take it one piece at a time. Good luck and I hope you will update us!
Helpful Answer (4)
Reply to NobodyGetsIt
froggoddess Aug 11, 2020
Thank you for this. It's one thing to know intellectually that "things will change" but it's hard to envision what that really means. This is exactly the kind of information I was hoping to get.
1.  Will you be able to do this and work?   Depends, do you work outside the home or remote (and if remote, how long with continue)?   If your mom cannot be left alone, and your commute is an hour you will need an aid about 50 hours a week.  Not easy or cheap.  If you need to go out of town, who will cover?   If a sibling, can you really count on them?   Even if well intentioned, they may cancel at the last minute.

2.  Will your marriage suffer?  I think so.

3.  What if you give up after a year?  You can probably get your mom back in a NH, but may have to wait.

4.  How do I take care of myself?  Good luck, most caregivers do not (I have not seen my physician in two years).

You are not crazy, but I think you are underestimating this.   Maybe talk to a social worker first.
Helpful Answer (4)
Reply to FloridaDD

As a caregiver, my advice is to leave things the way things are. Caregiving especially for your parent can be very time consuming & can drain your strength especially if you don't take time to care for yourself. She is known there to her caregivers & must have been doing well where she is or you would have moved her prior to March. Your life has developed over the past 8 years & so has hers. Things would definitely change for both of you if you were to bring her home. Your independence & career would probably suffer. Not being able to leave for out of town meetings or visits or having to leave early to handle a crisis back at home. Your family & private time with your husband would diminish or not be enough for them. Anger from all may arise. There should be no guilt as you have spent time with your mom prior to March. Unfortunately things changed with the pandemic. Speak with your husband, children, friends, or a counselor to seek the answers to your questions if this blog doesn't help you decide. Do not feel guilty for leaving the situation as it is. Call the director of the facility to see what type of communication (cell phone, iPad, Skype calls) can be set up to allow you to speak with your mom. Can you see her through a window? Send her cards as well. Have they evaluated her for depression over the past few months? I think anxiety over our lack of control during this pandemic has us questioning things that we wouldn't have questioned before. Reach out to others around you for reassurance. 🙏
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Reply to ToniFromRVA
NobodyGetsIt Aug 10, 2020
Dear "ToniFromRVA,"

Great comments especially the fact that the caregivers know her mom and the fact that she must have been doing well all this time prior to the pandemic.

And definitely any questioning we're doing now because of the pandemic are questions we wouldn't necessarily have done prior to the virus outbreak!
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The answer to your question is in your first paragraph- it is 24 hour care. It's a huge responsibility, and everything else you do will have to come second place to this. I think you are also looking for permission not to do this. You have some awareness of how enormous this caring role would be, but are feeling a massive dose of guilt about thinking of an alternative option. For your sake as well as your mother's, it may be better to organise professional care for her so that both of your needs are properly met.
Helpful Answer (2)
Reply to Chriscat83

Well, at least you're asking all the right questions!

Taking your second-to-last paragraph:
1. No.
2. Depends. Possibly not, but your husband would have to be a very staunch person indeed.
3. Good point. If it feels bad to leave your mother in residential care now, imagine how you'd feel having to tell her you couldn't cope and you were returning her.
4. Not the very best of them. Otherwise, yes.
5. No, but you will find that many previously absorbing areas of conversation have lost all value for you (you won't necessarily be wrong about that, you see. If you lose all interest in the private lives of celebrities it means your priorities have undergone a beneficial adjustment).
6. Good research and a strong network of support services will see to that in practical terms. Emotionally, it won't be any better if you're trying to be in two nursing homes at once.
7. Pass.
8. Pass :)
9. You'll feel guilty anyway. I don't know if that's a reassuring thought?
10. Absolutely, emphatically not.

How do you decide...

What does your mother think? Have you actually asked her?
Helpful Answer (2)
Reply to Countrymouse
froggoddess Aug 11, 2020
She asks me every time I talk to her to get her out of there. She even asks my father when she sees him to take her in, and they've been separated since 1996. Some moms (such as my MIL) say "never take me in, live your life" but that's not my mom. So I have been keeping this research process from her, knowing how much she would get her hopes up.
#9... it is in a way reassuring. It means that can't be my main motivator. I don't know if it is the main, but it's a big one.
First of all, Froggoddess, big (((hugs))). It truly sucks to be in this position, a real "damned if you do, damned if you don't".

I'm taking care of my mom, 86 with end stage CHF. We (literally) just started hospice. It has been both a blessing and an unholy curse to be a caregiver. I wish I could say I was one of those people "honored" to take care of mom, but a lot of time what I feel is -not resentment - but this sort of dull ache that my life is "passing before my eyes" so to speak, while I'm here with mom. Not that there's much we even COULD do, were we so inclined, if mom wasn't in such poor's more the knowledge that we CAN'T do anything that rankles. Makes no difference that COVID would restrict us just as much if I weren't mom's caregiver, but unfortunately logic doesn't play nicely with emotions.

My mom doesn't require the amount of care that *many* other people here are dealing with - she's not incontinent, she can still eat "regular" food, she's relatively mobile - albeit slowly with a walker - I can't even imagine what other people here do with all of those added responsibilities! Before going on hospice, I often asked myself what would be the "final straw" so to speak, when I would look to place my mom, and depending on my mindset, that was a somewhat sliding scale. But if I were still working full time, there would be no way I would be able to do this, even with hired help. My job was too demanding and too unpredictable. You can't even compare placing children in child care to taking care of an elderly person. The caregiving demands, while "on paper" seem to be similar, are vastly different.

I can tell you honestly, my marriage has not suffered at all. I am married to a prince of a guy, who will drop ANYTHING to help me, so that was never a concern for me. That you question if your marriage would suffer, probably means that on some level it might. That doesn't mean it would suffer irreparable damage, but it will cause added stress.

I can only tell you that if I were in your position, I would probably leave mom where she is. I don't think I would have the mental magnitude to take on 24/7 caregiving, especially of an elderly parent where there is little to no chance of improvement or recovery.

But I'm not you. This is the only advice I can give you, and I don't know how helpful you might find it...once all is said and done, and your mom has passed into the next phase of the journey, if you can look back and say "I did the best that I could with what I was given" then you made the right decision and should feel no remorse. If the best you can do is to keep mom in a safe facility, because you don't have the physical - or mental - fortitude to be her caregiver 24/7, then you absolutely made the right call and you should be at peace with it and yourself. There is no shame at all in that. You clearly love your mom and want what's best for her. Unfortunately, sometimes the choice isn't good v. bad, the only choice you have is bad v. worse.

Lots of love!
Helpful Answer (2)
Reply to notgoodenough
froggoddess Aug 11, 2020
Thanks for your kind words. I know you are right. These are the worst kinds of decisions, the Bad vs Also Bad.
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