Facility or home care? It is a personal choice. Misguided guilt should not cause anyone to make the wrong decision.

NHWM thank you for your post and this thread. So many lovely caring posts! When I first came here it was for support, it was hurtful to me when someone harshly critisized me for a decision I had made around setting a boundary regarding my parents care. That response was not a suggestion or helpful advice it was a judgement. I came close to not coming back but realized that the vast majority of people here are respectful and supportive. That was over 5 years ago and I continue to be thankful for this forum and people like you :)

Lmao, good luck with that happening!

NHWM, no you have not clearly stated that. I sent you a PM before you posted to explain to you exactly how I feel about your statement and why.

I will not air this out in public where the squad jumps me. My opinion is between you and myself no one else.

Stacy,

I clearly stated it is a personal choice. I took care of my own mom for 15 years in my home.

It wasn’t the right choice but I thought it was at the time.

I am thrilled that others pointed out to me that it isn’t always the best choice for everyone.

Of course, none of us will agree on everything, nor do we have to.

There are people who say that they can’t care for a loved one in their home for legitimate reasons and others do not respect their decisions.

Their decisions should be respected. I find the people who criticize the most do not or have not ever had anyone living in their home.

For instance, my friend called me earlier. She has had her MIL living with her for many years.

My friend is 67 and has her own health issues.

She told her husband’s sister that she wasn’t sure how much longer she could endure the responsibilities of caring for her 9O year old MIL.

Her sister in law chewed her out, saying that she never wants to see her mom placed in a facility!

My friend said, “Well then maybe you should take a turn taking care of your mother, because ever since your brother and I took an early retirement we have been doing the heavy lifting while you do nothing but criticize me.”

I feel sorry for my friend. Her husband has five siblings. Not one of them help and they shame her to death if she mentions a facility for their mom.

My friend should never have to feel guilty about not wanting to do a ‘thankless’ job!

I am sure that you know how that is. It happens all the time. It’s very sad.

Not to be contrary here but I have an issue with this statement, "I  have seen certain people on occasion try to guilt or shame others to take a parent into their home." From a perspective of an outsider, one person states something you do not like and the rest of you pounce because you do not agree. This is supposed to be a forum of differing opinions but it has become a pack of coyotes attacking for a meal. I do not understand how you do not look within your own actions. Some people choose to place, some do not for differing reasons.

Rovana and Chris,

I wholeheartedly agree with both of you.

It is a personal choice, guilt should never be experienced by any child or spouse if they simply can’t care for a loved one in their home.

Some people can afford extra hired help, while others can’t.

If assisted living is an option, that’s great. If not, a nursing home is the only option left.

NeedHelp, I think you’ve given an honest appraisal of the realities of caring for a parent in your home, based on your own experiences. You are right about the physical challenges of providing care, as well as the emotional ones. When we take the job on, maybe we don’t really understand how this will totally change and dominate our own lives. Maybe we think our relationship with our parent will be strengthened. We probably don’t think about an “exit strategy” either. There is no right or wrong answer; as you say, each situation is unique. But I do agree that guilt should not play a part in any final decision.

Caring for a parent does not necessarily mean caring for them in your home. You can "subcontract" and arrange some other type of living arrangement/care.

Snoopy,

Many of us feel like you do. I echo your sentiments.

You’re absolutely correct. Disagreements are a natural part of life situations.

We can participate in a healthy debate and be respectful.

We can agree to disagree. We can try to be open minded and learn from each other.

When someone purposely badgers another person it is a shame.

Very well said, Gacy.

Thanks for your sensible response.

Thanks for your story NHWM. Like you, I wish I was part of this forum 8 yrs ago. Home care, adult day care and finally MC were decisions I made in a vaccuum. Aging Care would have helped.

Making LOs the promise that you'll always take care of them is hard not to do when you're asked. But, in reality, that's the promise you should make. Promising to take care of them is different than promising not to put them in a nursing home. That's a promise not to make. Caring for someone means providing the best care you can as long as you can. When a caregiver is under stress, feels they're trapped, obligated, sees no future or even has suicidal thoughts, they can no longer personally care for their LO. But they still can PROVIDE for care. I wish everyone could care for their LO at home thru their final days. In many cases it's just not possible. As you experienced NHWM, your choice to home care seemed right at the time. But progressive diseases aren't static, they get progressively worse. So does the job of caregiving. No one has the obligation or even the responsibility to personally care for a LO at their (the caregiver's) emotional, physical and financial expense. So if you choose home care know your limits of care giving. Know when to say when. And don't be afraid to commit to caring for your LO, knowing that facility placement IS caring.

Thanks for this, NHWM.

I am feeling that the recent behavior you describe goes beyond disagreeing into downright trolling and I wish AC would take a stronger stand against that sort of behavior.

One particular poster (who may be a teenage boy for all we know, having a good time getting all us old gals riled up!) followed a person asking for help coping with her abusive mom on two different threads, provoking fights and redirecting attention to himself/herself which I assume is the goal.

I wish AC would moderate more. Responding to the individual seems to be counterproductive as the attention just fuels the behavior. But that prevents the constructive discussion OPs need and deserve.

Daughter,

My daddy had a stroke while in the ICU after his heart surgery. His life was never the same afterwards. Their quality of life diminishes greatly.

I know strokes are different in everyone. Your mom had severe effects from hers. That had to be excruciating to witness. Your mom sounds like she was a remarkable woman.

Daughter,

I am so sorry that your mom’s life changed so drastically. It is devastating to see a parent decline.

We never know what the future holds for any of us.

There is truly no possible way you could have cared for her.

I am so happy to hear how caring and attentive the staff at her nursing home was. I wish everyone received that kind of care.

NGE,

I am so glad that you had a great support system. Some people do, some don’t.

My husband was wonderful too. My daughters love my mom and would visit her but the bulk of caregiving falls on the caregiver.

It’s still hard being a caregiver no matter what the circumstances.

It can become challenging and is a big responsibility to take on.

My mother’s care was beyond what I firmly believe anyone would be capable of providing in a home setting. A hemorrhagic stroke took away literally every ability in a blink, leaving a sweet lady who could do nothing. It’s hard to know how literally I mean nothing unless you’d see her. It remains the cruelest thing I’ve ever witnessed. Her care was intense, requiring two workers for each thing she needed. We were blessed to have good nursing home care, she never once had a bedsore or other issue. She was gotten out of bed each day, engaged as much as possible in activities and life, but her days and nights were long and hard beyond measure. There was no personal choice. It was simply all we could do. And it was heartbreaking. For my dad, we chose with him to keep him in his own home with a lot of help. This went on for years, and recently ended with him dying at home with hospice care, which is also family care. It was extremely difficult but also a privilege to see him out the way he wished. My dad often said he’d never live with any of his children nor could we live with him. I still appreciate that wisdom. It’s often been disheartening here to see the oft repeated “there are no good nursing homes” and “everyone should care enough to be doing in home care” It’s often just not that simple, there are wrenching, horrible events that happen, you can’t plan for every scenario, and are left doing your best. It’s then that support and encouragement are so needed. Thanks NHWM, good topic as encouragement is a strong suit of yours

NHWT, comparatively speaking I had it pretty easy taking care of mom. I did not suffer any sort of financial strain. I had a wonderful support system; my husband, my kids, my sisters, even my sisters-in-law when I needed help. Mom was pretty much mobile until the very end, and while she was forgetful, it was over unimportant things. We butted heads every so often, but never anything that was not able to be resolved later.
Still, there were times when it was just overwhelming. I can't even imagine what other people here go through (or went through) without the support system I had - if I was overwhelmed, then I don't know what word is big enough to describe what they are dealing with. And I know it's not a competition, who is having a worst time of things; if I can give someone some comfort, then I owe it to that person to try my best, since I found such comfort here when I asked for support.

NGE,

I couldn’t agree more. The last sentence in your post to Lea speaks volumes. A caregiver forum is primarily to offer support.

A person who comes here is already suffering. The last thing that they need is for someone to make them feel guilty.

I had anxiety and depression while caregiving in my home.

I was literally crying to a social worker one day about being horribly frustrated while caring for my mother.

The social worker was very compassionate and told be about AgingCare forum.

Finally, I found a place that I felt that I could express my feelings with likeminded people who were going through the similar things or had been through it. I appreciated the support and learned a lot from the posters.

It took some time for me to process it all, but that’s okay. The seeds were planted. I had food for thought and ideas to build upon.

Lea, you raise a great point on basing opinion on first hand experience. I would never dream to give advice about keeping/moving LO who has dementia, because I have never cared for someone with dementia! To try and compare my taking care of my mom with CHF, to someone taking care of a dementia patient is like comparing apples to hedgehogs! And then to try and insinuate that my decision to keep mom home is the only moral, ethical, "proper" way to do it, to insinuate that NOT choosing my way is somehow unloving and dishonorable, is just wrong on so many levels.
I only hope the people who come here seeking a kind word and practical advice on trying to make what seems like an impossible decision can tune out the so called few of the "moral majority" and find comfort from those of us who are genuinely trying to be supportive.

Lea,

I absolutely agree with everything you just posted!

Caregiving does not always have to be done in our homes.

Also if a person isn’t able to care for themselves in their own homes, it would be a better option for placement.

I will give an example. My uncle, mom’s brother was living in a big two story house by himself. He could no longer go up and down the stairs.

He was living in his basement taking sponge baths.

My uncle got an UTI, then sepsis and almost died.

He told my cousins that he wanted to stay home and hire 24 care!

His kids kindly told him that he could never afford 24 hour care.

My cousin looked at nursing homes and found suitable placement.

My uncle wasn’t happy at first but he settled into life in the nursing home. His children went to visit him every week.

He had Parkinson’s disease like my mom and lived to be 96.

All of my cousins work full time. There is no way that they could have cared for him.

There are many forms of 'care' that a child can provide for a parent, not just one. When my father asked me to 'take care' of my mother when he was on his death bed, he didn't give me a list of rules I had to follow. He wasn't specific with 'how' I had to care for her, just that he'd like me TO care for her. Since they were both living in Assisted Living at the time, you can draw the obvious conclusion about what he meant in 'caring for mom' after he died.

People who like to impose guilt trips on others and put words in their mouths about 'how' and 'where' their parent should be cared for are stepping out of bounds. Nobody can speak for another. Nobody can say what constitutes 'right' or 'wrong', or tell someone exactly what their parent 'meant' when they asked for their wife to be 'taken care of' after their passing. To do so is to play God, or to feel they're a messenger OF God or for God, and that's simply not the case.

We are all human. We all do the best we can. We all make decisions based on our own personal situations and based on the circumstances at hand. My mother, for instance, is wheelchair bound. That is only one of about 10 issues she faces with her physical health, and her mental health is drastically impaired. If I were to take her into my home, I'd have to move, literally, b/c her wheelchair wouldn't even fit into one of my bathrooms. Or, I'd have to renovate the entire house. So, if someone were to lay a guilt trip on me about 'your father TOLD you to take care of your mother meaning in YOUR HOUSE', they would have no knowledge of my situation, or my mother's issues that require more than one person to handle.

Each situation is unique. All we're here to do on this forum is offer our advice and/or opinion which should be based on firsthand experience. Not on hearsay or interpreted bible quotes or what the guy next door is doing. Or what Aunt Tillie's nephew's brother did with his mother that worked out just splendidly. Not all mothers are sweet & loving; not all daughters are born care givers. It's all okay and it doesn't need to be justified here or anywhere else.

What we choose to do with our own lives and our own decisions belongs to US. We can give our advice once or twice, and then let it go, leaving it up to the person who wrote the question to make up his or her OWN mind about how to move forward with THEIR own life. Without judgement or remorse or guilt of any kind.

Great post!

NGE,

Thanks so much for understanding my thoughts.

You reiterated my thoughts perfectly!

Well said, NHWM!!

We should be concentrating on giving support to our peers, not try to influence a decision through misguided guilt!

Each set of circumstances is unique, and what worked for me might not necessarily work for someone else. And it's not fair for me to try and "force" someone to see my point of view by making them feel worse about themselves and the situation they find themselves in!

Unfortunately, there are always a few in any forum who build themselves up by tearing other people down. I have decided, personally, not to engage with these few anymore; it's like trying to read War and Peace in the dark - all you get i a headache and no understanding!!

I feel that we occasionally need to remind ourselves of what a support group or forum means.

I feel sad when I see people struggling with the decision to care at home or placement in a facility.

It is an agonizing situation for caregivers and it breaks my heart that some people feel compelled to make them feel guilty about placement.

I don’t see shaming of anyone that is caregiving at home when it’s going smoothly. That is good because there isn’t any reason for it. No one wishes for them to place their loved ones in a facility.

As someone who has taken care of a parent in their home for an extended period of time (15 years) I can tell you that it was the toughest job that I ever had.

For those caring for loved ones at home and it’s working out, I am very happy for you. I wish that would have been my experience too. We don’t always get what we hope for.

I have seen certain people on occasion try to guilt or shame others to take a parent into their home.

A good solution is to tell the person who is criticizing to offer to take care of them.

People who don’t want to do the heavy lifting shouldn’t tell others that they have to struggle with enormous caregiving responsibilities.

I sincerely hope this behavior of trying to make others feel guilty will cease.

Let’s encourage, respect and support each other.

We can have differing opinions and share our feelings or concerns without degrading each other.