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.
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.
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.
Stress brain causes accidents, definitely.
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.
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!
As to your parents, you are doing what you can. Keep a steady mind to deal with situations as they arise. Don’t forget to say a prayer, when you are overwhelmed.
Within the last year, both my parents have been placed in a nursing home. My mother, who went in first, had a harder time. Throughout her life she has had so many hospitalizations and rehab stints, but she eventually came home. When that didn’t happen this time, she had difficulty accepting that this was her new home. Last month, my father joined her as her roommate, and that has helped. My father, on the other hand, has been enjoying the activities and freedom he has to go anywhere in this large facility. One of the CNA’s said she can’t keep up with him because he rolls himself all over the place! Today I am going to a Mardi Gras ball and parade that the facility puts on in which my father was named to the royal court. He is excited about that.
Do my parents get perfect care? No, but they weren’t always getting the best of care when we were taking care of them either, as we were worn out physically and mentally. And they surely did not get the social interactions that they now get in the nursing home. As their children , it is our responsibility to advocate for them now. The caregiving doesn’t stop, it just changes. I have come to realize that the nursing home and family are partners in their care. There is not a week that goes by that I don’t see something that needs to be addressed, but there are many visits which are uneventful and I’m just sitting around with my parents having coffee and sharing photos of their great granchildren on my phone. I know this sounds wonderful, and it is, but I haven’t mentioned here the almost decades of torturous moments prior to being admitted to the NH to get to this point with my parents.
What has helped me in this huge transition for all of us is coming to accept that, especially at first, it is difficult. This is your and your parents new normal. If you and your parents are stressed right now - that is normal! That doesn’t mean you don’t take steps to ease the transition and alleviate your anxiety (coming to this website is a great step), but realize and accept that this is a hard time for you and them right now. It won’t always be so. You will get the Medicaid situation sorted out, you will find a place closer to you. Your parents will adjust, and you will settle into your parnership as co-caregiver, but that hasn’t happened yet, so take one day at a time toward this future, and give yourself room and permission for all the crying, anxiety, stress that you are feeling. We have all been there. Hugs and prayers for Daily Strength.
Did you know Parkinson has hallucinations associated with it? Fear causing hallucinations by the way. Its not a room full of butterflies appearing, its scary stuff. My uncle called 911 and reported multiple bodies all over his house, you should have scene that. Another time he was found in the closet because men came to kill him. That said, having dad where he can have someone 24/7 is a good thing. Breath, you've made the right decision there. You are up against disease and time, neither can you fix. There is no easy way to age, it hurts to see someone you love slip away a little at a time. My mother is a SOB, has been since the day I was born, she is 90 and Im 60. Believe me, if any child should walk away, it was me... and I still provide financial, secure and care of this vile, venom spewing, 2 faced, nasty, self centered, arrogant woman. And here you are with 2 parents that obviously you love very much. You cant do much better, maybe move them closer to you, but you need to get a grip on you, you think its hard now, dont wait til you crack....everything collapses a lot fast than it was built.
Maybe, whats eating you is that mom and dad have aged to a point where you have never seen strong good parents reduced to helplessness via age and illness. That unspoken thing in the back of your mind that saying their time is coming....you'll have to say good bye....where did the time go, shoulda woulda coulda...Thats ok too. Let it be, if thats a truth.
Your doing it right, because you care.
Safety trumps happy. When living in their own home is no longer safe, they need to move to a facility.
If they were still able to think clearly, they would not want you to ruin your life and health to care for them.
Guilt is counter-productive.
After four years of driving 100 miles each way at least three times each month to help my mother, I moved her to an AL facility in my town. It would have been nice to let her stay in her town, but there was no one there to help her. As far as friends to visit, mom was in her mid-eighties, and most of the few friends who were still alive were in care facilities or had limited mobility. Mom had to give up driving about a year before I moved her, so she could no longer visit anyone either. As time went by, this was only going to get worse. Although she chose to move to my town, she later said she wanted to move back. She never understood (or remembered) that there was no one there to help her, so I would just tell her that I was working on finding her a place to live there, or that I had put her name on a waiting list for a nice place. I believe that having her close enough that I could visit and check on her frequently was better for both of us.
A few things were: because I’m not just an only child but disabled as well, not to allow my parents to literally make me ill... since I saw the need to put mom in ALF back in September due to moderate dementia and DEPRESSION plus CHF, hypertension, mobility issues (very painful arthritis and walking and standing problems), after the original placement, she has done quite well, is a lot more cheerful, is eating well, has made friends, has one of those seat walkers that she loves and keeps the halls ‘hot’ going up and down! More exercise is always good! So it’s working out well for NOW, for her.
It’s dad. He proportedly does not have dementia, he’s just demanding and probably narcissistic. He’s still living at their house, and can care for himself, just bought a new car, and is insufferable. He drives ME as if I was a mule, telling me to do this and that, all the while being fully aware I’m not a healthy person at 64. His policy is don’t ask, demand. I’ve had pneumonia in October (I have COPD); severe influenza this February ( I haven’t recovered yet) plus he expects me to run around town doing errands, COOKING, housecleaning, while never even offering gas money. He’ll call me 20 times a day. If I don’t answer then, when I do, he savagely berates me!
Then I got an idea! Turn off my phone when he starts and don’t turn it back on unless I’m using it! If he gets verbally abusive I stand up and leave the room and leave his house early the next morning. He has my daughter intimidated but she’s got to learn to stand up for HERSELF.
The latest was I was stricken with the most hellacious flu I’ve EVER had! My husband took care of me and caught the flu too. We’d visited the doctor Tuesday so we settled down in our infirmity, PHONES OFF, and slept and tried to keep water down. By Friday my dad is angry. I don’t have a right to be sick?! By next Monday dad’s irate. He’s harassing my daughter, telling her she better tell my husband to call him! (I did explain the flu situation to dad last week, on Wednesday!)
Yes sounds like he’s got some dementia but he’s mean, manipulative and vicious too. He’s told my daughter he’ll put me in a mental institution! He’ll do this, that and the other! Only my DH could commit me and he’s had it with my dad.
So, you are constantly learning new things about family members. Which is right now, I’d rather be around my mom, she’s a sweetie and I’m beginning to wonder if she’s been abused by that domineering man!
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!!
It sounds like you have a good support group in their current community, is this something that will continue, others going to visit/check on them for you? Is this something you would have if you moved them to your community? I ask because it will be better for them to have a multitude of friends coming to visit and seeing you when you are able as opposed to you are the only one that visits because no one else knows them. It may be harder for you but, it may be best for them. Just my thought.
I have done a ton of reading over the last 6 months, as I was faced with having my dad who has dementia and was/is very sick, which I had no idea (long story) ask me to come get him to move to my town. After 2 months in hospital and skilled nursing facilities I knew that he required more care then I could give him. So some of what I learned was that family will always get the brunt of all the crap, they can be doing well and all you hear from them is how bad it all is and they want to go home, some parents don't want their kids to have any happiness because they don't, not saying your parents, and they will go to extreme measures to get what they want.
It is a hard journey but, you can do it, you raised children so you know have to be the adult in the room, you are now there with your parents, they no longer have the ability to see the realities of living alone and the danger they face by doing so. You have given them a gift of love by making sure they are well cared for, have visitors and are safe and warm, not an easy gift to give but enormously loving.
Think about the pros and cons before you decide to move them away from their hometown, the more people you have supporting them the more you have supporting you.
God bless you for all you do for them.
We are definitely the sandwich generation, and it's exhausting. We finally found my mother another facility near our neighborhood and moved my mother there. Miraculously, she's much more calm now. That doesn't work for everyone and isn't always possible.
Do what you can to make sure your parents are safe and comfortable. Then, take care of yourself.
I worked with a doctor closely to get my parent's meds right, and once they were, things calmed down. You're just in the storm right now....
And no, honestly, it's doesn't really get "better" because you reach a point when this is a consistent decline now and you'll be having to adjust to "new normals" all the time....
All we can hope for is to make them as comfortable as possible and help them have little enjoyments before they go....
Why can't they live in their own home with a paid caretaker looking in on them? It sounds better than what they're going through now. Before there were nursing facilities, people lived and died at home. I'd rather just die than live in a nursing facility.
One thing that has been helpful is to have email or calls with the DoN about what I see and what I want in his care plan. I stay on her until I get answers and results.
He should be able to be on the medication that works best. So what if it every 4hours? That’s why they are in LTC! It’s not for the convenience of the staff...that’s why they have medication techs.
Next, although we so wish for our parents to be happy and to adjust, we can’t make it so. It is "good enough" to know they are safe and have basic needs met. And none of their unhappiness is your fault. All you can do is advocate for proper care for them. That is enough.
Usually 3 months is what it takes for them to adjust to new surroundings. I’m glad you’re going to take things to make it more home like.
I understand about you thinking about them all the time. That is normal when you shoulder the burden and care about them. You may want to talk to your doctor about helping you through this period so you can get sleep and feel less anxious.
Most of all know you are doing the best you can...you are a good daughter. No one ever said this was easy....hug your kids lots!!
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.
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!)))
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.