I am new to the forum and have been reading some great advice here. My elderly parents (dad is 81; stepmother is 78) live about 1,500 miles from me. My stepmother has dementia (though she is in denial), spinal stenosis, and emphysema. She is on oxygen most of the time and in a wheelchair when she leaves the house. She can't be trusted to drive the car without someone with her as she has gotten lost multiple times. My dad has several health issues (diabetes, high blood pressure) and recently had a brain hemorrhage. They live independently in an apartment complex. They are on a fixed income and often try to live beyond their means.
I have been living with my parents since my dad's brain hemorrhage, taking care of my stepmother for the 4 weeks my dad was in the hospital and rehab. She feels she is the only one capable of making decisions, but can't keep any information straight or remember what has been told to her. It has been a roller coaster of emotions trying to take care of her.
My dad was just released from rehab but needs a good deal of care as he continues to recover. Until this event, he was my stepmother's primary caretaker and did everything for her - all day, every day. I don't think she realizes how much he (and now I) do for her on a daily basis. My sister who lives nearby had a baby last week and isn't able to help much right now.
I will be returning home next week as I need a mental and physical break. I know that sounds awful, and I am struggling with a lot of guilt, but I just can't keep doing this. After much back and forth and my stepmother insisting she can take care of herself and my dad, I have gotten them to agree to let me pay for a home care company to come in 4 hours a day next week. My dad will also receive some home health services. I know this isn't nearly enough for them, but it was a small victory to get them (mostly my stepmother) to agree to this. I am wary of leaving, but I also know from reading a lot of posts on this forum that they will need to see for themselves how much care they need before they are ready to accept it.
I guess I'm just looking for reassurance that I am doing the right thing. The time is fast approaching when they will need to either have in-home care long term or move to assisted living, both of which cost money they don't have. I got them to agree to the help next week by continually telling them this is short-term, until my dad gains back more strength to do they things he normally does.
Does anyone have suggestions on ways to help my parents come to terms with their situation and need for help? Do I wait for a "crisis" for them to realize it on their own? Do I just keep bringing it up and hope it eventually gets through? Thanks for any and all advice!
Are you the PoA for either of them? If not, and no one is their PoA, you have no real power to get them to do anything.
Dementia robs people of their abilities to use reason and logic, and therefore their judgment is usually poor and getting poorer. They lose their ability to empathize, so she won't care how exhausted, broke and bedraggled you get from orbiting around them. You will burn yourself out trying to "convince" her.
Absolutely do not pay for their care or aids or anything -- because it is unsustainable and is robbing from your own future. Do not expect your sister -- with a new baby -- to be taking up any of the orbiting, either. Call social services for their county to get them assessed for in-home help. If they won't accept any of it -- oh well. Back out of the care and persistently call APS.
The "crisis" will mean they look to you to solve it on your own, with your money. The help your parents need will just increase and increase and you will burn out. If no one is their PoA then the county will eventually become their guardians and will help them and get them situated into a facility.
If it so happens that one of them has a medical emergency, make sure you go to the hospital to insist your stepmom (or dad) is an "unsafe discharge". This will mean the hospital should work towards discharging them directly into a facility. With emphysema your stepmom might require LTC, which is covered by Medicaid -- if she qualifies.
Sometimes with dementia and caregiving there are no good solutions... only "least bad" options. May you receive clarity, wisdom and peace in your heart on this journey.
It can be a lot for a family member to absorb, especially a long-distance one.
A sudden health crises can propel a family into deep water. Their boat suddenly heading for the rocks & need a new Captain. You have to learn the entire manual on how to sail, all the specialised lingo & all all those sailing knots would help too.
Will the existing Captain & First Mate hand over authority to you?
Or must you turn pirate, bring in your fleet & take over?
I'm in this sea too.
Be a slueth, ask questions & look for clues to why they could be against assistance. Some usual suspects are fear of change, mistrust of strangers, lacking insight into care needs, sadness or anger at losing independant skills.
Reason & common sense may work.. or not.. Brain injuries & dementia.. 😞😞.
Stress that *having staff* to assist them will KEEP them in their home longer.
However, refusing needed assistance = less safe = falls = being moved into a NH faster.
The acceptance of home health care - 4 hours is a GREAT start. See how this goes.. quickly fired.. or become wonderful new friends..
Plan A: Age in place.
Plan A.A: Add assistance.
Plan B: Move into care
I'll add C for comprimise too.
Aim to increase her insight. Although potential to gain insight will be limited - by both the progressive brain chchange of dementia &/or low oxygen to the brain.
From what you write, it seems you'll have more success with Dad. Aim to reduce his denial.
"resistance to give up their independence"
Old age, illness & disease has already taken a lot.
They just don't know it.
Sorry to be the bad news!
But all is not lost - it's just the next phase of life.
Sometimes they don't seem to understand or accept it no matter how much you explain or even by their own experience. (My LO says they don't fall & don't need help, despite 7 falls a year)
Your father now has a residual confusion from his brain hemorrhage, and who knows how long that will last. He may never return to his prior state of functioning, which would not be unusual in very elderly people.
I will reiterate from my original response to you:
If no one is their PoA or legal guardian (family member) then the county will eventually become their guardians. No one can legally make financial and medical decisions for another without *someone* being their legal representative or guardian. I'm not saying this is what to do... I'm saying this is what happens if there is no legal representative in place when their care reaches a crisis point.
If your parents are resistant to/uncooperative with care and no one is their legal representative able to create a care solution for them (against their wills but in their best interests)... then your family has to decide to either pursue guardianship for one or both of them or step aside and allow the county to become their guardian. Been there, done that. The trajectory of how this unfolds depends upon the state/county in which they live. You can inquire about emergency guardianship but this may not happen very quickly, either.
I wish you all the best as you try to manage the trainwreck. Keep asking questions on this forum for guidance from those who have walked in your shoes.