Parents are miserable. How does this get better?
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.
Most residents do eventually settle in (and forget they ever objected). Perhaps being in separate rooms might even help. They could still eat together and do activities. I think many residents take more than 2 weeks to adjust. Have you talked to the Director of Nursing and the Social Worker?
Advocate for your father's pills to be adjusted. It might be a little inconvenient but the NH should be able to dispense meds on the schedule they need to be on. Have you met the NH's doctor yet? If that is who is now treating your parents it would be good to talk to her or him.
You are considering moving them after Medicaid is approved? Does that mean there are suitable facilities near you that will take Medicaid, but don't take Medicaid-pending?
If your parents settle down where they are and then have to be disrupted to start all over again, this gruesome transition period may be repeated. On the other hand, being able to visit more often and get to them quickly in emergencies is valuable. This is one of those weighing the pros and cons of each options situations. Neither is perfect. Which one is better?
Remember that your parents' infirmities are Not Your Fault. That your parents need skilled care is Not Your Fault. That none of the care centers near you accept Medicaid-Pending is Not Your Fault. That your parents aren't settling well is Not Your Fault.
This is a heartbreaking situation. There is no way that you can avoid feeling sad, angry, frustrated, powerless. But please don't add guilty to the mix. You are doing your best and your parents are lucky to have you.
I found that I had to detach, stay away and let the staff do their thing. My presence just reminds them of all things home and makes them worse.
You have to ride it out. As hard as it is we know our folks cannot be home. We can’t fix this for them or make them happy. Pull back, keep in touch with staff. Caregive from a distance for awhile.
after taking care of them at home with help from my sis and paid caregivers.
We had our caregiver stay with my parents in the nursing home, for our peace of mind and their comfort. This made a huge difference.
My parents lived fugally, worked and saved their whole lives. They would have considered this an extravagance. Mom has advanced Alzheimers and is wheelchair bound. Dad had Parkinson's and a feeding tube.
He thought insurance paid for everything. We let him think that.
One thought from my corner: Don’t know how much FMLA you took for this, but can you cut it short? The active part of getting your parents in care is over. Now they are “just” miserable. Which is something you cannot fix.
Since FMLA is unpaid and a limited allotment each year, I recommend getting back into the work groove — and back to life as you knew it.
It’s only February. Save the rest your 2018 FMLA for a true crisis. Old parents being intractable and unhappy is not a crisis — despite how much they want us worn-down adult children to believe that!
Later this year, one of your folks might have a health event that requires you to take time off work. (Hope not). Or you might need the damm FMLA for your own or a child’s health issue or accident. (Again, hope not.)
It’s easy to buy into the myth that we have to be physically present to care for our parents. Not true.
You have given your folks the best care possible — and the best gift — by finding them 24/7 professional care that includes meals, activities and no home maintenance.
You DO have to be physically present to maintain your career and raise your children.
Give yourself permission to take care of YOU. And your household. And your financial security.
This crap is so hard. (((((BIG HUGS!)))
Today, almost two years later, they are both in an Adult Family Home, and they are happy. My Dad keeps telling me "I'm so glad you found this place. It feels like home."
The transition from their home of 20 years, to the facility was very difficult for all of us, but it was worth it.
You and your parents will get through all of it. Just keep loving them.
There is a lot for your parents to get use to.... such as the noise is different to them, the lights that come in the windows at night are different, their room is different, the food is different, there are too many new faces to learn, and new time tables, and they feel they are around too many "old" people when they themselves are the same age if not older. It's a realllllly big learning curve.
Do what Windyridge above is doing, detach. Don't visit for awhile. Let them adjust on their own terms. And for you to adjust. Hang in there.
This is just my opinion about moving elders closer. I think it is better that they remain in the same community. Thus, when the news comes on, the anchors are talking about places that the elders know. Same with the local newspaper. And the other residents are usually locals, too.
she and I discussed our frustration and even anger at the turn of events for them. We decided, that we would rather enjoy our time together than be upset with one another. We made this decision more than once. But her answer was always the same. She wanted to have a peace between us for our time remaining. I Thank Jesus Love for that!!
God Bless You, and I do hope it gets better for you. NO GUILT!!
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