Recently put both parents into long term skilled care. It's been 2 weeks. Dad has advanced Parkinson's and is a constant fall risk and wasn't able to be compliant with his meds. Mom suffered from severe short term memory issues and suffered recent TIA attacks. Dad is not adapting. He's adamant on leaving. He's fallen. They must put an alarm on him constantly because he is trying to leave or walk without aid. He is fearful, combative and angry. He suffers from diabetes and is deaf.
I live 100 miles away and cannot be there continually. We chose this nursing facility because it is in their small community and they will accept them pending approval for Medicaid, which has also been a complicated process for various reasons which should have been easily remedied, but this is NM where nothing is easy.
My mother could thrive but he's wearing her out like he was when they were home. Now, she too just wants to go home. As if they were being punished, they now resolve to do better. I'm riddled with guilt and heart broken that they are so unhappy. Everyone says they'll get used to it or it will get better. I cannot see how. Their room is not homey as of yet because they may need to be moved and perhaps separated due to their various needs.
When I showed up on the weekend I found them disheveled and confused with all their items packed in little plastic bags as if ready to leave. His nurse came to retrieve him from the lobby where I found him and he reared back in fear telling her not to touch him and begging me to take him home. He says they are not giving him his meds right and they are tracking him. He says they've stolen his hearing aids and he's lost my mom. It was gutting. I found one hearing aid in a little bag they'd packed. I found my mom exhausted slumped in a chair in her room wearing her pants backwards. She looks worse then when we brought her.
I don't know what to do. I'm sick with guilt, grief and disappointment. When and if they are approved for Medicaid, my thought was to move them closer to me where I can be there often. What help he revived from the VA was not enough to have in home care.
The days for them are semi functional according to the staff but the nights are long and tortured for him. I believe his meds, Exelon and the extended release carbidopa/levodopa make him crazy. He hallucinates and has very vivid dreams. He does better with the shorter acting Sinemet but needs it every 4 hours.
I'm worried the stress will kill us all. How does this get better? What is the alternative? They were not safe at home and now they are miserable, angry, fearful and weaker then before. What a mess. I haven't quit worrying since they arrived there.
Is this normal? Am I doing this all wrong? I have taken FMLA at work to be there more often but it's a battle when I leave and I cry the 100 mile drive all the way home. Despite FMLA my work suffers and I'm a single parent who needs my job. I'm in the sandwich generation caught between elderly parents and kids of my own. Although my kids are grown and despite living with me are independent and supportive. I suppose I've lamented enough. I, too, am exhausted.
Holy heck, when I was in the thick of MomGate, I had 2 fender benders in one year. Both my fault; my mind was a million miles away.
And countless other times, I’d catch myself driving like a dipsh*t because “monkey brain” had taken over. 😐
And I was always grousing about Mom’s horrible driving. Ha!
I am so touched with your journey. Most days, it seems impossible. Many suggested that they will "settle in". Unfortunately, I feel I must tell you that was not the case for my dear parents.
I will tell you what made it better.
Care assistants that were NOT from care assistant agencies. I hired concierge, private individuals, picked by trial and error but it helped. Expensive so just a few visits a week, sometimes one. They were my eyes (I was out-of-state) to let me know about the staff care. Big Help. They played games and talked with parents and ran errands for me. Most of all, they SKYPED us; we stayed connected. It helps that staff knows you get to "see" them.
I insisted on email with the PA or head of nursing, the business manager, the administer, the activity director, the maintenance man, and especially the social worker - and most important, the receptionist. Always speak from the heart and never from angry (unless necessary).
Fax the doctors if problems.
Mom had severe dementia and stayed ready to "go home" every day.
Dad became more frustrated especially when Mom passed.
Oh they played bingo, ate meals with others, were kind to everyone (usually) - but everyday they wanted to go home.
Being dependent is so hard on them. Being the daughter making decisions for the best is hard too. It's hard. Get all the help you can.
Oh, I chose to keep them together. Plus & Minuses, but I do not regret that decision.
I do wish I had kept them at the facility in their home town. They had friends there who probably would have joined them as residents. I moved them to facilities I thought were better staffed and "nicer". Three "nicer" places had their own problems and never became "a new home".
If they had lived in a large town, I would have tried 24x7 home care. But that too is a full time job, for everyone. A lot of coordination with Medicaid & VA.
Speaking of VA. Ask your local American Legion or VFW for a service officer to help you get an EXPEDITED application for A&A to use with Medicaid to be able to pay for those private care assistants. And ask for retroactive pay (that would require a spend down before the end of the month). Which brings up - elder lawyer. Best thing I did for myself was find the best elder lawyer I could to handle Medicaid & VA questions. Not cheap, but you need real answers and real documents from POA, Advanced Directive, MPOA, property protection, POD accounts, etc. etc.
Most of all, take pride in being compassionate, but be kind to yourself.
2 mantras:
Lejeune: "Don't worry about whether this will be easy or difficult, just consider what would be required."
and
If think of caring for your parents as a beloved garden you are tending,
"Worrying is not watering"
Visit here often. These people helped me and my parents for 4 years.
Stress brain causes accidents, definitely.
In a perfect world all our parents would have earned tons of money and stashed away plenty to fund their old age.
This isn’t a perfect world. Some parents can not afford 24 hour care in their home. Let’s be real, not many can. Your first responsibility is your children. You have to work to provide for them and yourself. You have made the decision to place your parents. It appears to be in their best interest. It certainly doesn’t sound like they would be safe at home!
You commented on your parents appearing disheveled. It may be that during this transition time they are refusing help with grooming, dressing, etc. Maybe your Mom insisted on having her pants on backwards. My Mom went thru a time where she insisted on having her jacket on inside out!
I too suggest not visiting too often at first. Your parents are having other visitors that can report to you.
Mom’s nursing Home had a psych service come in to tweak meds. She was never over medicated but they did eventually find a combo that calmed her down. Kinda sounds like this is what your Dad needs.
This is a transitional period. It’s gonna be hard on everybody.
Try to give yourself a break.
I understand more and more about the dementia that comes with Parkinsons and I thank you for suggestions about talking with doctors and nurses about the meds and we have adjusted them so if he needs them every 4 hours, he gets them. I talked to him about the alarm monitor and reassured him that they are not "tracking" him but instead is our way of ensuring that staff is doing their job and caring for him when he is trying to move about on his own.
They have begun physical therapy with both of them and since they are considering walking home, I suggested to the folks that they get to building up their strength to make the walk!
The biggest hurdle next to this transition is the Medicaid. Their ID's expired and I never noticed. Now trying to get them a state ID (not even a federally compliant one) is near impossible. MVD expects that I should cart them over on a stretcher if that's what it takes to ensure their photo is taken and they sign documents that I don't believe they have the cognitive ability to understand. After showing them document after document, expired ID's for them since 2010 and letters from the nursing home all they did was stare straight ahead straight faced. I bet each and every one of them has a federally compliant ID along with everyone in their family. I shared a flock of middle fingers with each of them as I left. A call to senators and legislators didn't even raise an eyebrow. "I don't understand how this is a federal issue?" said one congressman. Because it's mandated by the federal freakin government because of terrorism and undocumented aliens wandering into our country! Because it's prejudicial to the poor, elderly, homeless, sick and disabled!! Meh, I was just getting worked up.
I cannot dissolve their trust and open a bank account for them without a valid ID. Despite a durable POA. Despite legal advice from an Elder Law attorney.
We are now forced to swoop instead of swerve. The excess money in their trust was spent down by pre-planning their final expenses and keeping records and receipts for every purchase made for them from clothing to comforters to spruce up their room. Should they be denied Medicaid because of their trust which no longer has money above the required resource limit, I will fight and die fighting.
Anger has now taken the place of guilt and this distracted driving many have correctly mentioned has been somewhat alleviated. My son now insists on driving because I made the 100 mile trip home in an hour. I was lucky not to get pulled over. I was lucky I had angels taking the wheel. Really, I was stupid.
Thank you all, truly.