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I think we sometimes get mixed up thinking that if we send our loved one to a facility, we are bailing out on them. I think there are two separate conditions:


(1) This person is an inconvenience to me


(2) I am not capable of giving my loved one the care they need.


I do not want to bail out because my loved one is an inconvenience to me but I do need to know where is the line that I need to accept the fact that I am not capable of doing it anymore and need to let others take care of them. Where can I find that information?


My life experience has been "you just hang in there and do the best you can and keep on hanging on."


Now I am thinking that may not be the best plan of action. I know God will provide a way, but that does not necessarily mean that "I" am that way. He uses people, but I am not necessarily the only person He can use.


So if anyone can add some light to how I can tell if and when I need to change caregiving.


Thank you all so much for your loving care you give and being willing to share with the rest of us.

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Lexi, reverse the situation; I told my husband, who is much younger than me, that I don't want him to be my caregiver, especially for dementia or something so difficult. If (God forbid!) I get something serious, I WANT him t put me in a nice, hopefully faith based, AL and come visit when he can - bringing goodies! We can still be friends and love each other without all the stress and aggravation of him "taking care of me" all the time. Can you see it?
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LexiPexi Dec 2018
Mally1 - Thanks for your response. Yes, I can see it, but he can't or won't. Years ago, I did my legal paperwork, etc. And, I've updated it every five (now every two) years - to keep it current.

Husband was always extremely healthy. Nothing was going to happen to him. I've been with him for over forty years. He's never had a cold or the flu. However, with the neurological condition, he continues to deteriorate. No heart, cancer, hbp or sd, etc. He is very healthy - with the exception of PSP / Parkinson's and their related issues (unable to walk, dementia, blindness, incontenience, etc.)

Also, he is a little too good for a nursing home, but not good enough for assisted living (in the greater Phoenix area). He's kind of at the in between stage.

Is anyone else experiencing this in between stage?
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It differs for each family, but two important questions are about safety and burnout.  Is the LO violent, or do they wander away from home?  Burnout also differs for each.  Can you remain sane and healthy, get out and rejuvenate?  Are you retired, or have a career, or need to work?  Do you have help, and a back-up plan if you get sick or need hospital?

You sound like you have already given the question a lot of thought.  We have to decide what's best for their care and can we do it without making ourselves sick.  Good luck, and be aware of angels helping you.
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I appreciate all of these comments. However, most / all of them reference their Mother / Father / Parents.

I would like to read additional comments from people who are caring for a spouse / husband / wife.

I feel that when my husband needs me most, I will be abandoning him - putting him in to a facility.

Thank you.
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anonymous272157 Dec 2018
I take care of an aunt who has no children.  She can afford some hired companions so I can get out sometimes.  When we decide we can't do it anymore, I know she'll feel abandoned, but we'll do our best to visit a lot, and allow her to feel her own feelings about her situation.
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I based everything on safety.
As long as it was safe for me to care for my Husband at home there he would be. And by safe I meant safe for him as well as for me.
He was over 6 foot and at the start of our journey he was close to 300 pounds. If he had not been easy going, compliant or violent I would not have been able to manage.
One of my thoughts was what would happen to him if I were hurt caring for him. Luckily with the help of the VA and later with Hospice I was able to get the equipment I needed when I needed it so it never became an issue.
But if there is any doubt in your mind if you can safely care for someone it is best left to trained staff and a place with enough staff to care for a loved one.

By the way part of this safety is Mental and Emotional safety as well as physical.
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As one knowledgeable person told me about the people working in nursing homes "they're professionals; you're not". I keep this in mind if/when I get a thought that "perhaps I could have kept my parents at home longer".
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When you don’t want to get up and face the day, when all of the joy is gone from your life.
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I put my mom in a NH in Oct 2012 - I could not take care of her in my home - the care workers wouldn't shower her in our tub as it was deemed 'unsafe' for her use

It would have cost us 10 of thousands to make our home safe for her plus she increased our stress so much [our drinking went up 25% in 9 days] that it was a matter of time before 3 [mom, hubby, me] would all be hospitalized

My mom came into our care when my dad at 89 reached a burnout situation so I took over but I was 63 with health issues of my own [2 knee replacements ++] as did my hubby at 66 [heart surgery ++] so we were not spring chickens - we all recognized that the time came for mom to be in the care of professionals & not in our untrained care

Now I ask what is your situation - when mom went to NH she blossomed with 10 activities a week that I could never have been able to do - if you think this is a maybe then I would advise that you try a 2 day then a 1 week trial stay with some time between - this way all can start to see if this is the best way to proceed -

FYI ... I told mom that when her hands healed enough I would go with her to next level [she never could do her exercises enough to improve] & she took it as if she was in rehab as temporary - she is now far beyond knowing this but because she still had some cognative ability she was able to absorb her new routine easily - I would advise all that going sooner allows them to get into routine easier without too much of an adjustment period
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I have had to recently do this and will tell you it is a hard decision. I took care of my Mother as the only caregiver for a total of 1 year and 6 months. I then added a weekly caregiver for respite care twice a week ( then only once a week) went through 5 caregivers in less than a year (frustrating.) the last caregiver started out twice a week, then could only do once a week and if she wasn’t the best one I had I would have looked elsewhere but she was very knowledgeable about dementia. I took care of my Mother for a total of 2 years and 8 months. Her dementia was progressing to the point where she was always trying to leave. I tried to make the house escape proof to the best of my ability without it being a fire hazard and she wasnt sleeping at night. It was also becoming obvious I could no longer leave her in a room alone as she was constantly falling. After a 3 night marathon of no sleep I called my siblings and told them I could no longer do this as 24/7 is not possible by anyone. They all understood and we followed the process of finding a memory care unit for my Mother. This was on August 1st. We toured three different facilities and although each one had great features we settled for the one she is placed in. Although my guilt of thinking I was doing her wrong kept coming back to me and in my mind thinking only I could provide the best care, I had to step back and realize I was going to be doing her a disservice by continuing to be he caregiver as the care I was giving her was going to be less than stellar as I was getting caregiver burnout big time. And this all came after having been on a vacation for a week and my brother took over her care.
I was told the same thing, once you think of placing them it is time. NO ONE is super human by them selves. Placing your loved one in memory care is the best thing you can do for them because now you can become their advocate again rather than just plugging along. And yes you have to be their advocate as they can no longer do it. Has it been easy? I will say NO. There have been bumps along the way and although she or he may not like it and try and make you feel guilty, it is best to became the daughter or son again and not the caregiver. If you love your loved one, do what is best. Yes I am her greatest advocate and make sure she gets the best care they can give. Keep in mind it will never match your care, but if they are well fed, clean and somewhat happy it is for the best. My Mom gets therapy several times a week. Now has activities that I never had time to do with her as I was busy taking care. She has others to socialize with, although if you notice all the residents are at different degrees of degeneration, they are all in about the same situation. The caregivers that work at this home have a tough job. It usually doesn’t pay that well, but they do it because they love it. Some are better at it than others, but that is what makes this world the way it is.
I still have days when I feel like this was a wrong decisions but my stress level has decreased and my health improved. Will I always have doubts, yes but that is what makes me human. You will know when it’s time and it will be alright. I still have the memories of being my Mother’s caregiver and we became very close during that time and can cherish those memories. Never forget that.
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Ree111 Aug 2018
I couldn’t have said it better! I just placed my dear mother after 4 years of caregiving. She’s adjusting well even though I struggled for months making this decision.
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sistasoul,  Good Afternoon,  Never having either parent in my home to live, I cannot answer to that part.  However, you asked about how to tell her you are placing her in a facility.  .Well, when you get the papers signed (for the place you feel is right for her).  Tell her you want to be the real daughter to her again, You want for her to have control over more of her life. Agree this is a bad situation, that neither of you asked for.  This place will offer her the choice to be by herself in her room or with others doing activities or just watching TV.  She will get the opportunity to eat 3 good meals a day and no clean up!!        You don't need to tell her that the staff at any of these places is trained to deal with whatever your Mom can serve up!!        The Dr. has signed off on her living arrangements and so that should make a difference to her, too!!  Praying that goes well with the transition to a better place!
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Each person's situation is going to be quite different, e. g. what if the adult child lives thousands of miles away for one, the health of the carer, etc.
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Each situation is different but there are some basic things are the same for all - sit down & figure the most likely scenerios for the next 5 years - be realistic even 'mean' - write it all down on paper with a separate page for each likelihood - use the examples you see on this site for inspiration

Now write how you will be able to manage each of them & which will tax you too much - be brutally honest with yourself here - put it all away for several days & then reread it, adding & taking away as needed - this way you will clarify for yourself & know how best to proceed - pick a 'roadblock' to use for example if during transfer he/she FALLS & YOU CAN'T GET THEM UP then you may feel that it beyond your limitations .... superman is a myth so don't try to be him

When my mom came down with dementia, my sister & I discussed when I should stop doing certain things for/with mom & we came up with 'when mom doesn't recognize me 3 times' as the answer - this happened a few months ago & mom truly doesn't know what is happening [she had part of leg amputated in early July & still doesn't know it happened!] - I cancelled her follow-up appointments on advice of the nursing home dr & nurses as it would be too taxing on her ... then I did some math so it would be 11 1/2 to 12 person hours to take her for the dr to see her for a small appointment [approx 15 minutes] because the math showed it effort was not justified [she sees a dr 3 times in 2 weeks in NH + the RNs daily so she gets care]

I also think you should take into account both of your ages - for examples mom is 92 & I'm 69 [161 combined], a wife taking care of her husband & both are in their early 70's [140+ combined] is different than if they are in their mid 90's [190+ combined] - the caregiver's age & own health issues must be taken into account not just the person needing the help - YOU CAN'T HELP THEM IF YOU ARE IN YOUR GRAVE
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I draw the line at safety.
Is it safe for the person you are caring for.
Do you have to transfer them? If so are you using the proper equipment?
Is it safe for you during a transfer? If you are using equipment can you use it properly and safely? If you are not using equipment should you? Can you get it if it is needed?
Is the person you are caring for at all, at any time violent? If so it is not safe for you and most likely not safe for them.
Are you able to care for yourself? Are you exhausted? Do you ever get a break for an extended period of time more than 1 or 2 days a week? If not this can lead to mental as well as physical exhaustion that can lead to errors in judgement.

I was told by several members of my support group when I asked the same question..
When you ask when is it time to place someone.. it is time. You have already entertained the idea you just need validation and confirmation that the feeling in your gut is right.

Often as women we are raised to be caregivers, nurturers, and healers. When we can not do those any longer "we" feel like "we" have failed. It is not a failure to realize that we can not do it all. It is not a failure to ask for help. It is not a failure to accept help.
If your outlook would change if you..
Got more help
Had caregivers some in to help out
Asked friends if they would run to the store for you, sit with your Loved One so you could take a walk around the block, go to the salon and get your hair done
Then ..
get more help
hire a caregiver a day or two a week
call a friend and ask if they can sit with your loved one
then
go for a walk
make an appointment to get your hair done
go out to lunch with a friend.

There is a high % of caregivers that die before the person they are caring for just because they have neglected themselves.
Self care is NOT selfish it is necessary.
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There are a lot of good responses here, but, I would also keep in mind that a person may continue to live their life in a facility. In order to determine the right kind of facility, you can have an assessment that examines the types of things that the person needs. Like, do they need help with their daily activities, such as meal preparation, dressing, bathing, getting medication, etc. OR do they need skilled nursing care? Nursing homes in many places are for those who need skilled nursing care or are not able to transfer well with an assist. You can check with your state regulations. Assisted living is also an option, as well as Memory Care Special Units that help with those who may need even more specialized care and/or secure environment.

There's no harm in gathering the information. It may be quite helpful if you need it. Waiting until a crisis occurs may prove to be quite stressful.
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My mother lived with me and my two children for 5 years. When she began wandering the neighborhood in the middle of the night, we knew we needed to do something. No one in the house was sleeping yet we had to continue going to school and work. We were terrified that something would happen to her. (A neighbor with Alzheimer's had died recently having wandered away while his wife/caregiver slept and he drowned in a nearby creek.) We consulted a gerontologist who took me aside and told me that my mom needed 24/7 care and would be better off in assisted living. I cried, feeling like I failed my mom but the doctor said it was time for me to go back to being my mother's daughter and not her caregiver. Those words helped me realize that my relationship with my mom had changed - I had become her parent or, as she put it, her jailer. I didn't want my mom to leave this world resenting me because I had to do things she didn't like to keep her safe and well. She complains about the facility, but she does understand that I cannot be her caretaker due to my work schedule, taking care of my kids and my own health issues. Now, I visit her 1-2 times a week in the facility where she gets good care, has people her own age to socialize with, and has activities and exercise to keep her busy. I bring her books and magazines and special snacks. We go out for dinner or shopping and I can just be her daughter again and we enjoy each other's company.
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Sistasoul Aug 2018
I am so relating to this post. The time has come for me to place my mom into a facility. I am still working full-time and my mom resents me leaving her with a caregiver. She has been getting more agitated with me. More violent (hitting me). My mom has always been a strict, mean-spirited woman, but she is also scary and loving in her dysfunctional way. I just pray that the move is not so hard on her..she will be about 3-5 miles from me at the nursing home until we get her placed in a facility with memory care (group living). I can't sleep some nights because she is up and I think she will tumble down the steps. She is driving me crazy more and more. I hate the weekends because I feel like I have cabin fever all weekend. She doesn't want to go anywhere, but then says I don't take her anywhere. I go to work just to get away most days.
She hates the idea of me dating, it stresses her out, just the thought gives her anxiety. She'll start yelling at me and saying god-awful things! I haven't been on a date since she has been living with me (3 yrs). These days, she picks up the phone when I'm on it to see who I am talking to. We got a new neighbor, a male, and she told me I better leave him alone. She tells my family I don't need a man and if one comes around here she will beat him up..lol. I know she just scared that if I get in a relationship, I'll forget about her. I told her she is my mom and I will always care for her whether she is is living with me or not. We haven't told her about the move, because we know she will lose her mind! I need prayers for the task. Anyhow, rambling, but I know with all the aggression and her not eating when she mad at me, it is not safe for her to stay with me. She needs to be somewhere so "I am not in control of what she does. I'm just her daughter and she is the mother." Which is what I hear EVERY DANG DAY! I am 43 yrs old, I need companionship and private time. So I am checking out the last facility on tomorrow and hope to make my decision by end of the week. My siblings understand, because I am basically doing this by myself.
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They are practically immobile and/or blind and deaf
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dementia is an advancing symptom
—caring for my wife for 19 years and watching this symptom advance is challenging
—Wonderful as she is as she remains a trooper
at 66 I may have 19 yrs left

My and Me. Selfish? Humility? Selfless? Doing unto others as we would have them do for us—-I would have not accepted help from anyone if it affects their own life permanently. Others are better at this and will be better company most likely
The greatest precipice is one’s view on will and ego. To contribute to mankind is to serve. Feeding many is an option other than feeding one her coffee Whenever she wants. Service versus slave parallel is weaving on the loom.

Others thrive at this. The rehabilitation unit charged Medicare nearly $1000 for 45 minutes last month—-she sat on a bed and in her wheelchair. The doctors recommended a “new” steroid—-she not only exhibited advanced symptoms of distress, clumsiness and irrationality but has developed sarcoma carcinogenic boils as a side effect. I just found out last week the infusion costs to Medicare were likely $90,000.00 USD

Caregiving here is 168 hours a week for zero pay plus 50-60 hrs per wk of assistance —PCA is wonderful Thank God
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Wow, thank you for this subject input. Warning—my response is a rant
“What conditions indicate it is time for a nursing home?”
The isolation and stressors of caregiving has now progressed to “I don’t care.” It’s time to move forward with a new option for my wife’s well being. That this will be better for her I have to trust in God. That you have mentioned this option in the light of the better caretaking people professionals is a new perspective. I’ve done my best but am now wanting to get back to work to sustain my spirit. Savings and jobs gone. Networks lost. My willingness to work at a meaningless part time job to support this way of life is a discard in this dynamic. It is now down to survival.
My soul is driving me back to working as a farmer. My experiences and work ethic are of no value being a caregiver Suburbia and urbanism drive me nuts.
While she would benefit from rural culture where neighbors work together, her refusal to leave her doctors and appointments that have proven no benefit as I have witnessed MS subtle takeover of mind, rational mind and body. No sense of community in this town. Here neighbors don’t talk unless I say hello. Yesterday I drove to my favorite state of hill farms. Not many cars on the road but everyone waves there. People working wave as we pass. People are genuine. Farming opportunities exist. Small farm and plenty of rental pastures. My business plan will create jobs. Something to get up for every morning.
Caregiving is boring and stifling at this point.

So it becomes a matter of decision.
Documents for nursing home have progressed to admission possibility.
So live and let live? The divide of will and acceptance:
Humility.
Selflessness.
Survival.
Selfishness?
Compassion has now turned to disdain. Crossroads. Praying for appropriate path. Praying for cleansing rain to current this river.

Onward Christian Soldiers
My hat is off to those who can sacrifice life to caregiving. Angels for sure. Always have known that I am no angel for certain. Now proven.
Picking up the dropped food, finding eyeglasses lost daily, watching judge Judy. Reading Aging.com.
This is not the life for this soul. It’s not about money or bureaucracy.

Time me to plant seeds and be a shepherd. Dogs and coworkers.
I now know that I qualify as a trained dog as I respond to pointing and commanding. Will use that experience to train dogs as well.

“Caregiver burnout” is a concept I never heard about until a few months ago. The data tests prove I am there. This is the only site I have responded to because people are gut honest. Thanks for that. That’s for real
Peace
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scatter195 Aug 2018
You have a right to live as well. You are not the person who is ill, possibly your turn will come in the future to be the person who is ill, don't throw away your chance to live now. I need to take my own advice, but mentally I'm not there yet. Caregiving is the most difficult thing I have ever done in my entire life and I really appreciate your "gut honest" thoughts.
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Hi Marymerry, my comments are similar to all those before. My mom moved in with me and my family several years after my dad died. At that time she was still able to live life independently without having a house and yard to tend to and safety issues from living alone. After a sudden devistating illness (brought on by a medication she was taking) left her in a hospital & rehab 5 months and ultimately in a wheel chair having to relearn basic daily functions, I was forced to say those words...I can’t take care of you at my home. I knew I could not physically continue to do the daily things she needed (and frankly, expected) me to do. I hear regularly that she took care of her mom and mom in law and never thought she would be in a “place like this” but life situations are different now. She and my dad were both retired when she took care of my g’moms. My husband and I are still employed. We have (2) sons still living at home and a 3yo grand baby. For 10 years Mom has lived in an assisted living facility and has somewhat adapted to her wheel chair. (But still refuses to accept the facility). :( I encourage you to listen to your body - listen to your heart. If you have a “knowing” that your loved one would be better tended to elsewhere, i would say it’s probably the right decision. Don’t let the guilt get in the way of your decision. It is more selfless to choose a care facility than some think. It was so difficult to choose that path but it was done with my MOMS best in mind, not MY best.
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I'm sure we have all heard or read about how "people in the old days" took care of their parents, "people in America put their parents in nursing homes" and similar accusations. I think a basic reason is that more people are living long lives, and the lifespans of the oldest people are somewhat longer than they used to be. For example, the parent, who was likely still ambulatory, might have died of a heart attack at 89 several decades ago, but now avoids that while developing dementia at 90 before dying at, let's say, 93 and might not be ambulatory during the last year or two; those last few years bring new health conditions and, more importantly from our perspective, sharply increasing needs for care that didn't exist when the person was just a few years younger.
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I believe it depends on both the level of care needed and the family's ability to adequately provide that care. There needs to be a balance.

I placed my father with advanced vascular dementia into MC after he had a serious heart attack and really needed to be taking his medication as prescribed (which family could not get him to do), needed active monitoring of his heart condition, became very unsteady from Parkington's, and was aggressive with my mother. My mother was his primary care giver for two decades and her own health was starting to fail under the stress. Mom's PCP told her she needed to stop taking care of my dad. Dad's in home care had gotten to the point that Mom needed my help to "deal" with Dad every day or two. I became afraid Mom would need me and I wouldn't be able to respond because I was working out of town or at one of the kid's ballgames or ill myself. He needed someone who could respond 24/7 and the family could not provide that. Despite not wanting to go he's doing much better in MC than he was the last couple of years at home.

I've told my mother (who lives with me now) that if/when she needs 24/7 medical care, then we will need a NH. As long as she can help support her weight during transfers or we can use a lift, then we should be able to manage at home since there will be some insurance and a little money for in home help as well as some family support. When I purchased the house we now live in, I moved a partition wall to create a large bedroom for Mom with a good view of the yard. This room provides a very comfortable setup for now and has the space for medical equipment that may be needed one day.

I won't deny that placing my father in MC has allowed both my mother and I to take back some portions of our life. We're both a lot less stressed and happier. But I don't think either of us have ever thought of my father as an "inconvenience" either.
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When the job becomes a job, it’s not the simple helping out it started as, but something overwhelming that you’re not realistically capable of doing, it’s time. When emotionally, physically, and/or mentally you’re exhausted and no longer able to be at your best for the person you’re caregiving, it’s time. When you can see that rotating shifts of professionals who come in fresh every 8 or 12 hours can take care better than you worn out and drained, it’s time. And it’s okay
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marymerry Jul 2018
So its really not about the loved one's condition, Its about me and my
condition. Wow. That's a new way to look at it. Thanks for reading
between the lines and sharing.
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That's a very loaded sentiment. There are countless services that we use that we could probably do without if we felt it more virtuous to do everything ourselves... is it selfish to choose public education over home schooling? convenience foods over home cooked meals? owning and using a car vs mass transit? Shouldn't we all dig up our yards and grow food rather than grass and flowers?
I know you are rolling your eyes and thinking I'm being irrelevant but I don't think that most people are choosing to not care for someone simply because it is inconvenient - life is complicated. Facilities exist because there is a need for them, and placing our loved ones (or having them choose to go there themselves) does not mean we care about them less than those who care for someone outside of a facility. Some of us can - we have the time, temperament, financial resources and physical ability. Some of us can't but try valiantly anyway - the forum is full of the angst resulting from that. And some of us just can't/won't for a myriad of reasons.
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marymerry Jul 2018
Thank you so much for your input. Some very good points.
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copied: where is the line that I need to accept the fact that I am not capable of doing it anymore


I never even gave myself the chance to see if I was a 'caregiver.' at the time I worked full time. and I believed my mom and dad needed full time care. I stayed with my dad in his home, while my mom was in hospital recovering from a broken hip. I didn't even last 1-3 week(s). I felt a level of stress that would kill me or send me to the funny farm.

the 'line' is ~any~ time you feel it's 'enough.'

when you are starting to feel alone, exhausted, confused, overwhelmed, helpless, sad.  then its probably time. The fact that you are asking, see it as Gods way of moving you forward in a new direction.
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marymerry Jul 2018
Very insightful. Thank you so much.
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