People are struggling with the decision of placement or home care.
There are valid reasons for both sides. In some cases home care works out well. Other cases facility placement is the better option.
All situations are unique and should never be lumped into one category.
I made the choice to do home care with my mom and while it wasn’t as difficult early on, later on it became quite a challenge.
Mom had Parkinson’s disease which is progressive and has no cure.
I did not realize how difficult it would be to care for my mom in the latter stages of a disease.
Caring for her became more than I could handle.
It is an emotional and physical roller coaster.
I took care of mom for 20 years, with 15 of those years in my home.
I felt obligated to care for mom because my father asked me to care for her after his death. I promised him that I would. I love my mother and truly wanted to do it.
I don’t think a parent even realizes what they are asking of a child when they request the promise to care for loved ones.
I seriously doubt that my dad would have wanted me to continue to suffer as caregiving became harder. He loved me very much.
My parents never cared for their parents so they did not have any first hand knowledge about caregiving.
I didn’t have a clue as to how hard it would become to care for her in my home.
I wish that I had known about this forum years ago so I could have been warned about the difficulties that would lie ahead.
When parents are living in our home the parent/child relationship changes, becoming complicated and stressful.
I regret having mom live with us. Temporarily would have been fine, permanently was very hard.
You're the main poster who helped me understand the difference between those to Gs. I thank God for you, and all the other frequent posters here. And, to NHWM for this discussion.
Colleen
It’s such an emotional time when we are in trying situations. As you know I was thrown into full time caregiving when mom lost her home in Katrina.
It it unnerving when people automatically expect the children, especially daughters to step in.
In an emergency situation we don’t have a choice.
I felt so badly for mom after she lost everything in Katrina that I sacrificed all I had for her.
I do regret caring for my mom in my home for so long. I should have made it a temporary amount of time, then found placement.
I felt completely helpless and stuck.
It breaks my heart when I see others posting what I used to feel.
You had the opposite situation because your mom refused to leave her home and you selflessly met her needs.
You ended up doing full time caregiving. It is tough for anyone in a caregiving situation.
Like Bob said, the people that don’t help ‘preach’ to the ones who do it all. How’s that for irony? Crazy!
Some of my relatives acted like I didn’t have a right or need to vent! Then the heavy laying on of guilt!
It backfired on them. I burned out. My brother ended up with mom after I cared for her for 15 long years!
She is now under hospice care at his home. She’s 95 and may end up outliving all of us!
Oh gosh, I absolutely hated when my mom would tell me, “You won’t have to do any of this much longer because I will be dead soon!” I can’t imagine telling my child something like that. What is the purpose of a statement like that?
Some people lay on the guilt very heavily. They stick the knife in and give it a hard twist! We eventually either burn out or become immune to it.
Alva brings so much wisdom to this forum.
We are grateful to you for sharing your personal story.
All of us has something to bring to the table. The purpose of this forum is to learn from each other and disregard anything that is harmful or damaging to us.
As Jodi said so well, agree to disagree if a particular solution doesn’t work for us. Caregiving is not a ‘one size fits all’ deal. It’s a matter of finding what works for each individual.
Thanks for your contributions that help all of us.
What a great description! “We aren’t felons.”
That is an interesting and very accurate perspective on the situation.
From diabetes to dementia/alzh and those with behavior issues.
Schz and all. Violent rages, anything.
Don't regret one second. : )
I WILL TELL YOU A BIG SECRET: IF YOUR HEART IS NOT IN IT, YOU CAN NOT DO IT.
I never felt like I could express my emotions completely until I came to this forum and wonderful people came forward to reach out to me.
Those who walked in my shoes knew what I felt having a parent living in my home.
People who work in hospitals or facilities have tough jobs but they get time off. They don’t have 24/7 365 days a year pressure on themselves.
I was encouraged by posters to seek out a therapist. The combination of a great therapist and the caring posters who understood my emotions got me through.
Once again, I had peace in my life. I am very grateful and know that this forum will continue to be a source of help to those in need.
NHWM's point is that home care doesn't work for EVERYONE and that those folks shouldn't make their decision based on guilt. And as you say, if your heart isn't in it, you can't do it.
No one here is mocking anyone's choices. Just trying to get folks to think with a clear head. The head that G-d gave us to use.
Thanks for your incredible support. A long time ago you inspired me to seek out a professional therapist when I needed it most.
I found the strength and courage to make an appointment and I learned quite a bit. I was able to speak freely to an objective professional.
It took awhile to process all of my emotions. Nothing gets sorted out overnight. I started journaling. I was on my way to healing.
I hope you will always be on the forum for everyone else that deserves sound advice.
It helped me to hear of your experiences of monitoring your mom’s care. I saw where you were successful in being a caregiver without being a ‘hands on’ caregiver in your home. You even spoke about how your mom thrived in her facility.
Posters need to see these positive messages so they know it can be an option for them too.
Thanks again!
to me Barb is one of those of whom we always say "Who I want to be when I grow up". We have SO MANY of them on Forum. Barb always pops to mind. JoAnn. Lealonnie, always so kind. There are so many. Some have such SOLID advice on a certain subject, be it law or financial. I see questions posted and ask "Where is Mstrbill or igloo or Margaret."
GardenArtist, CountryMouse. I could go on forever, and glad "edit"is there so I can come in and add. There are such great people here.
Some I so miss who had such wonderful advice. Ahmijoy? Where are you. The Captain who could be irreverant but ALWAYS make you laugh enough to lighten the load. I am missing so many.
I think of the advice they have to have given here that has helped to change lives. I wonder that most of us don't come here somewhat desperate. I sure did. I was SO anxious. Afraid. Grieving, in an anticipatory way. Shocked. There was so much I didn't know. I just loathed trying to do something I am not good at already. I NEEDED HELP and here it was.
And as much as the help, the advice where to go for answers, there was the support. And there were others suffering. And I hate to think that the old adage "misery loves company" is true, but the fact is we DO need to know that we aren't the only ones afraid, anxious, alone, confused, uncertain. I think about the advice I see on this Forum so often.
Fortunately, we don't have to.
This is precisely why we are here. To offer unconditional SUPPORT to everyone who seeks it. Not to lay guilt trips on anyone or to tell them 'what' or 'how' to do the hard job they're mightily trying TO do. It would be like ME telling YOU not to do the almighty hard jobs you're doing for people with 'diabetes to dementia/alzh and those with behavior issues. Schz and all. Violent rages, anything.' Who am I to tell YOU what you should or should not do or where you should do it at?
You are choosing to give that care, and that's fine. For YOU. If someone comes here and says they 'can't' do it all, like YOU can, in their home, if that's what you are indeed doing, then why should they?
They shouldn't.
And they should get the support they need, here on the forum, to place their loved one in professional care, if that's what they choose to do. Without judgment. Without insistence. Without anyone coming back 10 or 15 or 20x to tell them their way is 'wrong' or it 'should be' some other way.
That is what support is all about.
We are not here to force our 'opinions' on anyone. We're all right and we're all wrong and we're all somewhere in between right & wrong. And we're all suffering some kind of hell on earth ALREADY without being forced to suffer MORE from posters laying on the guilt trips here.
We need empathy, which we should ALL have in spades by being care givers to so many for so long. If we can't feel or show empathy in our responses, it makes us wonder if there really IS care giving going on or not. Because those who HAVE walked the lonely mile of care giving sure DO know what it feels like to be hopeless and scared and guilty and worried 24/7 without having MORE of those feelings laid onto them.
We can be kind; we can give our opinions once or twice & then move on to the next post without looking back. We can be supportive of one another, even when we disagree with their opinions.
Let's all try that now and see how IT works, since we know it doesn't work to be unkind and lashing out. Let's try to leave comments that the moderators do not have to remove, and to have discussions that don't have to be closed down for ugly content.
That should be our collective goal here moving forward; nothing else. We're all in this together, so let's make it FEEL that way!
Quite literally, every piece of advice I've passed on here (except for "you need to see a therapist" because therapy saved my life) is wisdom I've learned here.
Who knew you could refuse to accept discharge from a hospital? Who knew there was such a thing as a complete neuropsych evaluation that could tell me why my mom was so anxious, or a geriatric psychiatrist, who would look at the whole patient, not just one organ?
What I know about aging care, I learned here. From Pam Stegma, Jeanne Gibbs, Igloo, CountryMouse and others too numerous to name.
What a wonderful comment.
You covered it all remarkably well!
Thank you for the reminder that each person on the forum can be helpful to others by showing respect and support.
Someone who works in facility care does not have the pressures of doing home care. (24/7 365 days a year!)
As many of us have pointed out the person at home doesn’t get time off like a person working in a facility.
So unless they wish to take residents home with them, quit their jobs and do ALL of the hands on caregiving in THEIR home, they can’t compare the two situations. It is not a fair comparison.
You are so correct to recognize these people! I feel exactly the same.
It was comforting to know my feelings were validated after coming on the forum.
Before coming here I was going through the day to day motions but not in the best way.
I started off as a strong caregiver but after so many years. It wore me down.
The part that is so sad is when the dynamics of mother and child changes.
My mom and I had a much better relationship when she didn’t live with me. I was able to set boundaries.
After she moved in with me, it became a competition between two hard headed strong women! LOL
Time took it’s toll and I was breaking. Yeah, I am very grateful to Barb who recognized my brokenness and wisely told me to seek the professional help that I desperately needed.
Now that my mom and I are not living together we can speak to each other without competing with one another.
Mom and I are very different people. I am more like my dad.
I am so sorry that I missed your earlier posting on this thread.
It’s posters like you that I am actually speaking about the most.
Some people have nearly impossible situations to navigate. I completely understand your concerns.
I hope you can find peace in whatever decision you make regarding caring for your loved one.
Take care and many hugs. I will keep you in my thoughts and prayers.
https://www.agingcare.com/discussions/suggestion-to-become-active-in-promoting-caregiver-help-not-a-question-463299.htm?orderby=recent
While this is a Biden plan/idea, it will take an actual Act of Congress to get it working. In the post, I provided links so you can find your Representatives and Senators. The more who can advocate for this, the better! There are a lot of you out there, from many different states, so the more who can take a part, the better (sorry to those outside the US, this won't help you, unless we can get it implemented and perhaps your governments might wise up if they haven't already!)
While it may take time to work it out and get it implemented, which may not help all of you out there now, it could make a difference for so many who are suffering and struggling, and could also have an impact on your own future needs.
Please try to take a few minutes to read the article and then contact your reps. You don't have to write a book, just make a clear statement as to how hard it is, physically and financially and how much this plan would help so many. If enough of us do it, and encourage others, friends and family not on the forum, to do it, perhaps we could start a "movement!"
Getting this to happen won't help me or my mother - she has enough funds and is in a very nice place, so we're good. I also hope that between what I have been able to put away myself AND my property, it will be sufficient in the event that I need help or have to move to AL in the future. I wouldn't want to put my kids in the situation where they have to decide between them or me. BUT, I still believe that this needs to happen and hope to do my part in making it a reality.
It is just so heartbreaking to read the struggles of so many, esp those LOs who don't have the funds to hire help or pay for AL, their LOs who are using up their own meager savings for the future or having to give up a job, both of which will jeopardize their own future needs. I DO plan to contact my Rep and Senator, to ensure they are aware of this and hope they will take it seriously.
The fact that you can't lift her says you would need assistance. If you are paying for the MC facility, then you would have those funds freed up to help cover the cost of help in the home. If she is on Medicaid, they often provide funds for a limited number of hours of in-home help. Very limited. If you need 24/7 care, it will be much more expensive than a facility. If you can afford it, then that checks one box. If you would only have the limited hours that Medicaid provides, it might not be enough. You could also request hospice, if she isn't already on it. The help is also limited, but they can provide medical equipment and other supplies like briefs and wipes (no charge.)
The secondary issue is the virus. Yes, it can sneak into her facility and spread there as well. If they are stringent, they might avoid it. My mother's facility is a combination of IL, AL and MC. Our area hasn't been as widely impacted all these months, and up until about 1 month ago, NO cases for staff or residents. Then it happened. One staff member, one who works in MC, tested positive. They took extra precautions and have been testing staff a residents a lot. So far no one else has tested positive. Email today came to tell me my mother was negative. Although we've been lucky, the number of cases are increasing in our area too. Bringing help into your home may be a bit more dangerous. You have little control over who an agency sends or how well they stick to protocols. So, you have to consider that as well. The last thing you need is for either of you to get sick with this virus!
Sadly you are probably currently locked out, which makes it even harder on you. If you were visiting often before the virus and now can't go in, it must be so hard on you!
Another option is to ask the facility if you could move in, temporarily, to be with her. It might require testing and quarantine, and you would have to pay something to live and eat there, but it might be a way you could be with her, in her final time. Usually the cost of a second person is less than the full price for one person. It can't hurt to ask.
It's great that you can juggle all that and it works. Kudos. Someone can have the biggest, giving, loving heart in the world, but if they can't physically do the job, then it CAN'T be done. If it impacts their own ability to earn a living and survive, it CAN'T be done. If it jeopardizes their health or well being, it CAN'T be done. We unfortunately can't live on love alone.
Okay, so Plan B - I can't physically do this, so I'll hire people to come in. Oh wait. It can cost a lot to have hired help. To have someone just 40 hr/week at $25/hr, it would be $52K for the year, which is more than my income! It would be over $4k/mo, which is MUCH more than what most people get from SS. That also doesn't cover the other 128 hours in a week. IF they sleep good for 8 hours, then there are still 72 hours with no help. 10+ hours/day. We have to have sufficient income to take care of ourselves, our own families and there just may not be enough to cover the care of a very needy LO to allow us to survive now and provide for our own potential future needs.
Even if one can afford the needed help, what about major renovations that would be needed, such as making a bathroom handicap accessible or providing a way to get up/down stairs? My bathrooms are way too small to do this, and the stairs would be a costly nightmare! I am on fixed income, with a bad back and an overweight mother, who can't do stairs. I have to be careful what I do or I can end up unable to move (it has happened!) Then what???
My house also needs many renovations, currently half done with no hired help available. It wouldn't be a safe place for my mother (her place wasn't safe for her either.)
The point to the original post is to stick to offering support for your way, offering suggestions for how you make it work. Provide examples rather than just dictating that if you can do it anyone can. Those suggestions you have might be useful and help someone keep a LO at home. It's even okay to say you think your way is best, but UNDERSTAND that it doesn't always work for everyone. Don't PREACH that your way is the best way and make others feel more guilt if they can't do it your way. The same does go for those who immediately jump to the opposite plan - put them in a facility. Weigh everything the person says first. Ask questions if there isn't enough information to make good suggestions. Think about what they might be going through. They are not you. Their LOs are not your LOs. Every situation IS unique and how we handle it has to be determined by multiple factors, not just whether we have the heart to do it or not.
Your words always hit home with me.
Please keep sharing your insight with the forum.
Wishing you all the best! Let us know how your surgery went.
Caregiving is not a race! It's a marathon that you run by yourself!! No clear picture of how close we are to the finish line!
It can be painful and grueling at times! You can't run a marathon in someone else's shoes!!
Caregiving is not a competition!!!
I guess it boils down to the fact that there are people who don't simply "have" but also "are". When I was a freshman in college (50 years ago!), someone had written a comment along these lines on the bathroom wall about one of the people in the dorm hall (I won't repeat it here), and it rather fit that person's personality.
I hope someone will point it out to me if I go beyond the "have" stage in the way I treat people who are only trying to do the best they can!
My husband woke me last night up holding his mid section and was doubled over in pain!
He tells me, “I am really hurting and you have to drive me to the hospital.”
My husband never complains. He doesn’t whine. So I knew that he was in pain.
The first thing the nurse in triage tells us is, “There are active Covid cases so please keep your masks on at all times.”
He gets a room in the ER. They do a scan, blood in urine. It’s kidney stones.
We ask if he can make it to his radiation treatment for his cancer. He had to be there at 7:30. It was around 6:00 by this time.
I asked if he could skip radiation for today. The doctor said, “No skipping radiation.” So we had to go straight from ER to his oncologist for radiation.
The nurse comes in with discharge papers and instructions.
She says, “I used to tell all my patients to drink a six pack of beer to pee a lot to pass the kidney stones but the doctor said that I couldn’t tell patients to mix beer with pain meds!” So now I tell patients to drink water with lemon in it. She told my husband that when women experience severe pain, they produce a baby but he will hear a ‘ping’ in the toilet and that will be his stone!
LOL I cracked up at her comment! She was adorable! It really does help to laugh.
https://www.watermarkcommunities.com/bts/
Thanks, will check it out!
Thanks so much for making me giggle!!
We all need a good giggle these days!!
NHWM, your post has been so amazing!!
Thanks so much for sharing your wonderful heart!!
I truly wish I could just sit down with you over a cup of coffee!!
Cancer is so scary!! It gets in your head!! Psychologically!!
Although my cancer diagnosis has not been nearly as traumatic as your DH, I can tell you that it hangs over my head like a dark cloud!!
You're hubby is blessed to have you!! And you're doing an amazing job!!
😘