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.
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?
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.
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.
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.
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
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.
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
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.
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.
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.
—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
“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
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.
condition. Wow. That's a new way to look at it. Thanks for reading
between the lines and sharing.
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.
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.