What are deciding points in the nursing home vs. family caregiver debate?

Same boat here Isabelle.

I knew something needed to be done when my loved one's condition did not stabilize under my care in her home. She had done somewhat well in rehab, but I do believe she was discharged too soon. At home, she was a disaster. Expecting to be waited on, and non compliant with the home care plan in general (to make a long story short). Calling 911 for frivolous reasons whenever she was alone. I could not be there 24/7 due to work, my children, and other demands. I was the prmary caregiver, but she complained about me constantly - all while becoming more and more dependent on me and demanding more and more. She would call her sister to complain about the horrible care and then sister would become irate and would demand an explanation from me - which basically just took up more of my time because she would only contact me through email (long, rambling, confusing emails). She informed me she was keeping all of my email reponses in case she ever needed them (as evidence?). It was getting scary for me to be involved. Meanwhile, the sister I mention did not help me one bit with the care (of course not). Honestly, all I wanted to do was help someone in need. If you give some people a hand, they will take your whole arm (as well as your heart and soul). She's in a facility now with no plans to get out.

You should do it when and for how long it’s reasonably doable, and if it’s within want both parties want, or would have wanted when good decisions could have been made. Often, it’s simply beyond what a person can do and then the job becomes one of a caregiver ensuring that the nursing home is providing good care

BTW, being cared for by my sister and BIL in their house was good in many ways for my mom. For one thing, they gradually were able to wean her off smoking. She got used to not being in her own apartment and not making her own meals. It was a nice transition time for her. Sister had the support of family, and mom had two long weekends each month with other daughters, giving Sis some respite time.

But home-care also has some drawbacks. When she went into the NH she was delighted that she could get her hair done without leaving the premises. She enjoyed all of the live entertainment and the bingo, and to our GREAT surprise, she did all the crafts! She didn't have to get out of her wheelchair when she went on the medi-van to Walmart once a month. She liked having men around. She became friendly with the ladies she ate lunch with. She blossomed! After a difficult adjustment period of a couple of months, she was content there for 2.5 years.

Assisted living -- either in a family home, or in a facility.

Skilled nursing -- in a facility,

For me, a deciding point was the needs of the loved one. I felt as long as "assisted living" was adequate, the family could handle that (with some hired help.) If "skilled nursing" was required, that isn't usually something that can be provided in a private home. I was able to provide "assisted living" for my husband through his 10 years of dementia. My sister provided assistance in her home for our mother for 1+ year, and then we placed mom in a nursing home, where she did very well.

For a loved one who really needs nursing home care, I do not feel that at-home care is usually the best choice. Until then, lots of other factors can go into the decision.

I mean my answer to apply to families that are not dysfunctional, where there has been no abuse, and where there is true affection.

I'm struggling with this one as well. Before my mil moved in with us, she used to say she would stay in HER home and then move into a NH, but she was and still is in denial.

We ALL want to think that we will provide better/more loving care to our LO if they need help. We see or hear of the horrible NH's and kind of freak out---don't want something awful happen to mom or dad!

The reality is, in home caregiving is really, really, really hard. What may start out as a great way to care for our LO's will often deteriorate as they age and require more and more care. It's stressful in the best situation---and impossible in some.

So much depends on your relationship NOW, the whole family dynamic, how much care is required for the LO--so many factors. Also consider whether you still have children living at home--bringing an elderly parent into the mix at a teenager's crucial angsty moments in life is a recipe for disaster.

Make a list of pros and cons. Remembering that your LO is going to get older and less capable---if the thought if having them with you now is daunting--it won't get easier.

Only you can decide what is best. Your LO may not WANT to live with you--bear in mind what they want, of course. If they aren't competent to make this decision--well, that's one of the factors you'll run up against.

If you decide to go the SNF route, be a presence there, so the staff get to know you and know you're keeping an eye out. Never hurts. Many older folks love living in Independent Living situations. Lots of things to do, people to meet and Bingo to play.

Difficult situation and not a one-size-fits all.

Good Luck!

CWillie's observation very succinctly describes our situation. My father refused to leave his home, I tried to accommodate that intent, ended up spending more and more time driving back and forth with less down time for me. I deteriorated, my house and yard deteriorated, I was more frustrated, and more exhausted.

The situation was exacerbated because of a dysphagia diagnosis when I had to puree all his food, either at my house and transported to his, or at his, which was too warm for me to be comfortable.

When he was admitted for rehab for the first time this year, it was actually a relief for me. I could visit, spend more time, but less work. And our time together was more quality time and less work time.



These are major issues to consider and evaluate if you plan to provide care for him at home.

I feel the "obligation" of family is to be sure their LO is safe, well cared for, and loved. That can happen at home or in a good facility. Not everyone can be a home caregiver. Some can't afford it, others can't deal with behaviors, others can't physically handle the demands, some are simply totally grossed out by the care needed (like poop, lol). Each family has to weigh the options and the needs of their LO and then decide what is best.

One thing to consider is that sometimes the care we give at home is just not able to meet our loved one's needs adequately. Most of us aren't trained nurses and our homes are not built to handle the adaptive equipment that people with profound physical disabilities may need. Living with family may mean isolation from peers and little opportunity for interesting activities. There may also be an unhealthy family dynamic that makes daily intimate contact painful for the caregiver or the care recipient.
Then there are the financial considerations; while it may seem cheaper to care for someone in the home caregivers often fail to take into account the full impact of the loss of wages, health benefits and reduced pension payments, not to mention the difficulty of reentering the job market after a prolonged absence.
And most importantly, no one should try to do this without fully understanding the need for support from family, friends and social service agencies. Vague reassurances aren't good enough, you need a firm commitment that your support system is really helpful and more than hollow promises.

I personally think that when you ask the question it is time to start looking.

I would start with a needs assessment, is NH the right level of care required?

Do financial research on if they can self pay or do you need to file for medicaid, if Medicaid, get started, it takes months.

Try to find Medicaid pending facilities.

I personally prefer the facilities that have age in place care. Change is hard.

Take a week or month off for you, maybe this should be 1st, caregiver burnout clouds our brains and makes everything seem overwhelming. So, yea, do this 1st. Lots of AL, NH have respite care, take LO in to have their own vacation. This will also help to established needs from a different day to day caregiver and you will see how they handle change.

Flush any guilt down the garbage disposal, full grind. Caring for your parents doesn't require you to give up your entire life, advocating, handling paperwork, visiting as often as possible, making sure they are safe, warm, fed, cared for, etc. is still taking care of them, someone else does the day to day grind, which means you will have time to be a loving daughter as well. Special treats, meals, outings, whatever, as we all know that a 24/7 caregiver has no time, energy or ability to just be a daughter/son and do these things. To overwhelmed by the day to day.

May God guide you to the right place and give you strength to do what needs to be done. HUGS in this hard trial.

IsabelleA,

These are questions only you can answer and they depend upon on so many factors.

That you feel obligated to care for your parents is a personal choice. And no, it's not wrong to want the help of a nursing home but the only help a nursing home offers is residency for people who can no longer live on their own.

There is no one situation in which looking for a nursing home becomes acceptable. It may depend upon how difficult it has become to care for a parent at home. Or it could be based upon how burned out the caregiver is. Is the elderly parent's medical issues too comprehensive to manage at home (dialysis, bed sores, refusing to eat, etc.).

I don't know how long you should care for your parents. No one can answer that but you.