I can't be the only person on here who is afraid the person they are caring for will die. But my post earlier got zero comments. How do people handle that aspect of being the sole family caregiver? No one afraid of being judged? No one afraid they are not doing enough? No one loves the person they are caring for so much, they wish they could do more?
That said, I’m sure many caregivers are very concerned about the death of the person they are caring for. Not just because of the love and affection they feel for their family member, but perhaps also because of a legitimate fear of what will happen to them after the death. Will they still have a place to live? If not, where will they live and how will they support themselves, especially if they’ve been out of the workforce for many years and are exhausted and burned out? 😞
I will say I personally did not really have the feelings you mention. I loved my wonderful father very much but he was getting frailer and frailer and was ready to go to heaven. And after six years of caregiving (shared with my sister, not solo!) I was very tired. I also thankfully had resources so I didn’t have to worry too urgently about next steps.
I think a lot of caregivers may have felt similar to me when their loved one finally passed away as much as they may have adored them and still miss them now.
like snoopy said, I’m sure it’s timing re your other post
As caregivers we’re looking after a loved one, and with elderly loved ones, inevitably watching decline and change. When my dad was ill I wanted to do everything I could to “save” him, to make him better.
i did ask myself your questions and having come through the other side, I know I couldn’t have done more, I did enough. I also know that when I asked myself these questions, I was exhausted. So please take care of yourself
i also found this forum amazing support, reading others posts also helped me through knowledge of conditions to experiences
take good care
My hope was that my mom would pass peacefully in her sleep, if not my plan was the hospice room at the little hospital just down the street. In the end the burden became to much for me and my mom spent her final months in a nursing home and in hindsight I'm grateful for that, though there were many things that grieved me about her life there it was still better and more appropriate care than I could have given her.
Did I make mistakes? Of course. Did I not do everything perfectly? Of course. But I did the very best I could and that's all any of us can do.
So just enjoy your loved one while they're still alive as there will come a day when you'll be wishing for just one more day to care for them.
As you know every person dies at some point. Many family caregivers find themselves painted into a corner by a parent who needs care. Usually this person was long groomed by a parent and kept impoverished and dependent on them through types of psychological abuse like gaslighting and other types of mental abuse like manipulation and guilt-tripping. I was in a very similar situation to you with my mother. So I know where you're coming from.
It's time for you to start making a life for James. Not mother and not anyone else. The first step in making that life is taking the best advice on this thread coming from MG8522. Get into intense therapy. If you find a therapist and are willing to put the work in that you need to, you'll be okay when your mother passes.
How about if you take one step today. Find some quiet space for yourself and think about what YOU really want for your life. I'm pretty sure the life James really wants in his heart isn't taking care of a selfish, entitled, mentally abusive parent until she dies. Then write this down. Don't show it to anyone because it's only for you. Then set aside another block of time and think about who in your life can help you work towards the life you really want. The start putting yourself first not your mother. Good luck.
To answer your specific question about a doctor to oversee the big picture of her health, you can sign her up for a concierge primary-care doctor. You pay an annual fee (some will let you pay it broken down monthly). Where I live it's around $2500 to $3000, although some charge up to $10,000.
That enables the doctor to have a much smaller patient load, and they are available for same-day or next-day appointments (often by video, to save time), and to answer questions quickly through the patient portal. You still pay the regular bills and co-pays through insurance, but you get someone to take the time to look over care as a whole and to communicate with the other doctors if necessary.
Most of the people I know who use them are professional people who don't want to have to take time off from work any more than necessary, so it's worthwhile to get their needs taken care of quickly and efficiently. You may have to look around a bit to find someone with geriatric experience. But if your mother is willing to pay for this for herself, it should ease the mental and emotional stress on you and possibly free up some of your time.
We will ALL die.
And if you are caring for someone the likelihood that they will die is pretty high.
What you do is make peace with that fact.
You do the best that you can each day.
You provide the best care that you can.
You realize when their care is beyond what you can safely manage without help. You get the help you need and know that when it is no longer safe for you to care for them at home you find a place that can safely manage their care.
And when it comes time you allow Hospice to step in and provide comfort when there is no cure. (and I will tell you now that Hospice does not "kill patients")
None of this is easy but when you make peace with this, prepare for what will happen in 1 month, 3 months, a year...
As a caregiver we also forget about ourselves. You have to take care of yourself body, mind, soul. If you do not care for yourself who will care for both you and your loved one?
All you can do daily is the best that you can. No one can ask m ore of you than that. And if you do the best that you can you can put your head on the pillow at night and sleep well.
Medicare does not take anything. Its Moms health insurance. Does she have Medicaid? If so, yes, they will try and recover from Moms estatebif she owns a home. But as her Caregiver, you may be able to stay in the home if you can show you can afford to maintain it. Are you on the deed with Mom? If so, they can only recover on Moms half.
As you've discovered it's not easy, sadly one day the job will end; you do the best that you can do
So it seems that you are determined to keep your mother at home out of love but also because if she needs to sell her house to pay for care, or has a Medicaid lien on it for after she dies, you will be homeless. And that she does not even have the decency to leave you the house in her will after you have spent nearly two decades in it taking care of her, but you plan to take out a reverse mortgage on it to buy your brothers out in order to stay in it. And that she has given a couple hundred thousand dollars to her grandchildren while you live in poverty due to having no job because you are at her beck and call 24/7.
I'll believe you that you are doing this by choice. But James, please wake up to the reality. I hope you will find some kind of employment that you can do from home during the down time with your mother. Many mothers of young children do this. Often people who post on this board work from home, although they are generally already established in their careers. And you need to insist that your mother leave her house to you, as minimal compensation for the hundreds of thousands of dollar of income you could have earned if you had been in the workforce instead of holed up in the house with her. Don't just take her word for it, go with her to her lawyer and ensure that she does.
I hope you can take the advice you've been given here in the spirit it was intended. Get therapy before mom dies and your entire purpose in life is shattered.
I've been reading your comments on these threads, this post and a second post you have made.
It sounds like you're really just wanting someone to come in and observe and advise you on how to properly care for your mother.
If your mom can afford it, or with the help of Medicaid, please try hiring an in-home care provider, just for a month, or ask the doctor for a referral for a home visiting Nurse. Have them spend at least an hour or a few hours with you, and ask them to teach you or give you advice regarding how to care for your mom.
See if you can get help from a Hospice provider. If mom is accepted for hospice, a nurse will come to the home regularly. They can give you more information as well.
I learned a lot of what I know from spending all my time at the nursing home when my husband was there. I observed, and the nurse in charge started showing me things so I could do it myself.
The rest I have learned from experience or Googled whenever I have had questions.
I hope that it will do the same for you.