Follow
Share

I've cared for my dad for over 4 years. He had a vascular bypass done on his right leg, suffered a stroke after surgery, then had leg amputated below the knee. The original agreement was to help for a year while he regained movement on his left side and learned to walk again with a prosthetic. Once he was here, he started refusing appointments and did not want to work with any of the pt's who visited. He had a 2nd stroke and a seizure 6 mths later. Since then, there has been a noticeable decline in his memory, he's has hallucinations, and he has become violent towards me. He has been refusing to allow me to get any assistance, when the social workers have come out he will not sign for help. The neurologist finally agreed to do a scan, said there is abnormal brain activity, and referred us to a psychologist the first of this year. The psychologist put dad on medications and it seemed to help a bit at first. Now after his dosage has been increased twice, dad is yelling out my name every 30 mins-1 hour and saying things like "feed me", "turn my light off" (it will already be off), "I hate you", "I hope you can live with yourself when I'm gone". He will hit/throw anything within reach. Sometimes he will start sucking air in and out making a whistling noise and just stare at the ceiling. When I call his doctor, I get referred to the neurologist, who refers me to the psychologist, who tells me it's my fault for not being understanding of dad's depression and anxiety and then ups dad's meds. I just don't know what to do anymore. It's my fiancé, 10 yr old son, and me; none of us are getting more than a couple of hours of sleep and are all jumpy and on edge. It's to a point that I want to have myself committed just to get him the care he needs and to free my son and fiancé from this situation. None of the homes here will take him because he refuses to go.

Kryste, I think it will be very very difficult to place someone with as many physical and mental deficits as your Dad has. That's the truth. You can imagine the competition now for beds.
We often talk about the "ER Dump" here on forum. It is our great controversy. Is it good? Right? Desperate but necessary? Awful? The only thing I can say, as an old nurse, is that there are times that it is the ONLY THING THAT WORKS.
As you have already proven to yourself over time, and can continue to prove to yourselves as long as you need to, there is no help for this forthcoming. There are times, esp. after anesthesia in the elders that there is no coming back. I highly suspect there is more going on here than depression. And what is going on isn't really the questions. The likely and awful truth may be that your father may be in a condition until his passing that requires medications to keep him somewhere hopefully out of anxiety, but still in the waking world. That alone is going to be almost impossible for doctors and staff. For a family? This is also impossible.
I know if you have been here you understand what the ER Dump is. It basically is trying everything else and coming up against a brick wall, then calling Emergency Services for transport to an ER. Dad should have a whole workup from a urinalysis to exam to neuro psyc, but the important thing is that on admission you make it clear your father cannot return to your home. You will have to tell them that you can no longer physically nor mentally take care of your father in your home and he cannot come back to it. They will call the social worker and he or she will try EVERYTHING to convince you otherwise from "no beds" to "covid" to "we can get help" to "we can make this work". Basically they will try anything and everything to get you to take Dad home.
As a nurse I feared lower extremities and vascular surgeries more than any other; I saw more very bad outcomes than any others. Your poor Dad has ended here thought no fault of his own, no fault of yours, and it is a tragedy. However, it isn't one that you and your son and your fiance should have to pay for with decades of your life, and it could destroy you young family.
It will take a while to consider all this, to speak with your fiance and others, to try to figure if you have tried everything else. And then I think you may end desperate enough that you have to at least consider what I have said. The Social Worker will find placement. It is what they do. She may have to even call a judge and get temporary guardianship for you (they can do this in minutes. For you it would be a lawyer, a court fight, 10,000, a loss and debt for life, but a social worker can wave a want and make it happen).
I am so sorry. For you ALL, and especially your poor Dad. Not everything can be fixed. Not everything can end with a feel good moment.
Helpful Answer (17)
Reply to AlvaDeer
Report
Kryste Nov 30, 2020
Thank you for being honest. Dad had always been one to never let anything keep him down and this has shaken me to my core. He's always been the strong shoulder I could lean on, the prankster who made everyone laugh, the person who taught me everything he knew because he "didn't want his daughter to have to be dependent on anyone". I read the answers on here and spoke with my fiancé, we've decided to get a nanny cam to record the episodes- one reason is for proof of what is happening outside of the short videos I've already shown the doctors and the other is for our own protection, especially if this continues as it has been.
(6)
Report
Kryste this is more than you can handle Call 911 now. Tell them he is irrational, hallucinating and gasping for air. They will take him to the hospital for evaluation. When it’s time for him to be released, meet with the social worker and tell her that you can no longer care for him. If you decline to take him home, they will have to keep him until they find placement. You have to be strong and not take him home with you. This will only get worse before it gets better.
Helpful Answer (10)
Reply to Susanonlyone
Report

" When I call his doctor, I get referred to the neurologist, who refers me to the psychologist, who tells me it's my fault for not being understanding of dad's depression and anxiety and then ups dad's meds."

You need to visit your own doctor, so that they can tell you that you must take care of yourself.

It is not right that your 10 year old son can't get enough sleep. You are endangering his physical (and probably mental) health.

Follow the advice already written -- do the ER dump.
Helpful Answer (8)
Reply to CTTN55
Report

Just in case anyone is interested you can test for a UTI at home. You can buy the test kits over the counter. Here is an example of the type of kit you want. https://www.amazon.com/Multi-Parameter-Infection-Individually-Clinically-Urinalysis/dp/B0893M6R97/ref=sr_1_6?crid=25KQM4Z54P8CE&dchild=1&keywords=urine+test+strips&qid=1607081198&sprefix=Urine+%2Caps%2C253&sr=8-6
The important things to look at for a UTI are blood, leukocytes and especially nitrites. If nitrites are positive you definitely have a UTI. These dip sticks often check for glucose and ketones as well which is useful. They are extremely easy to use. Just dip the stick in a sample of fresh urine so it covers all the pads and lift it out again. Wait 30-60 sec and then match the colour of the pads to the chart on the bottle. Easy peasy. Also infected urine is often cloudy and can sometimes smell really rank. But not always.

I know this is so awful for you Kryste. Your adored wonderful dad is a different person. Yes he might be depressed but sometimes there just isn’t any medication that will help in circumstances like this. Has anyone considered sleeping tablets or similar for nighttime? Just so you can get rest? Although I normally don’t use benzodiazepines with my patients due to the addictive nature I sometimes will give a tiny dose for my nursing home patients with dementia when they are super agitated or just up every night unable to sleep. When used carefully they can be a godsend.
I’m praying for you and you family.
Helpful Answer (7)
Reply to bectwin1
Report

If you are dads durable power of attorney and medical power of attorney, and his Dr's have his mental decline notated in his records, then you should be able to get dad placed in a memory care facility, whether he wants to go there or not. It's really not up to him anymore, as it's clear he's not able to make his own rational decisions. You have to do what is first, in the best interest of you, your fiance, and your son, and second what is in the best interest of dad. Things are only going to get worse and you really are not equipped to deal with all that his care does and will entail. You've done the very best you could for the last 4 years, and now it's time to let those that are trained in caring for folks with mental decline take care of dad. You cannot continue with the way things are going. I believe you already know that.

Oh and another thing, if dad ends back in the hospital for any reason, you can refuse to take him back home, stating that you just can't care for him anymore, and they will have no choice but to place him in a facility. I believe you can also do that by taking him to the ER(it's called an ER dump), and saying the same thing, that you just can't care for him in your home, and they(the hospitals social worker)will have to find a facility to place him in. Wishing you the best, and please take care of yourself.
Helpful Answer (6)
Reply to funkygrandma59
Report
AlvaDeer Nov 29, 2020
The problem here I think is that the doctors are calling this "depression" which would mean Dad can say what he likes. Clearly it is so much more. You and I sure do agree that the ER Dump may be the ONLY way out of this, and I hate that.
(2)
Report
See 2 more replies
Great idea. I had a wireless camera on my mom ($40 on Amazon). Great little camera. Easy to set up and download app. It was a blessing to us. We saw every crazy thing my mom would do as well as all the unsafe things that happened. Including a fall out of bed that resulted in 120 stitches to her forehead. But even that didn’t keep her down. Only after my brother went over and found a phone cord (special phone for low vision) wrapped around her neck in her bed at 2 pm did we decide she had to leave her independent living apartment out of safety concern. She balked at first. But is now in a residential assisted living care home (much cheaper than a facility) and loves it. The rates are based on levels of care. She is doing much better both mentally, emotionally and physically. Do it!! A picture paints a thousand words. Good luck.
Helpful Answer (6)
Reply to Maggiemay1971
Report

UPDATE- Everything seemed to escalate with Dad after I posted my question. I scheduled an appointment with his PCP, earliest available was Jan 5th and they would call if there were any cancellations before then. I began making sure I had video and audio evidence of what was happening, planning on going to the appointment and standing my ground until we received help.
Early Thursday morning, Dad fell out of his bed. As I called 911, I asked him what had happened and he said he just wanted to die. He was taken to the hospital and admitted on a 10-13 (psych). The ER Dr is wonderful. Dad broke his nose and has a UTI he is being treated for. The Dr asked for Dad's history and I told him everything, showed him some of the video, and that I'm not able to give him the care he needs. The Dr told me Dad would not be returning home with me, it may take some time, but he would help me get placement.
The psych intake caseworker was not as nice when she called. She said once Dad received a medical all clear, they would send him home in a cab if I refused to come get him or if I couldn't find him placement. When I received an update several hours after her call, I found we were assigned a different caseworker and she assured me I was not qualified to provide the level of care Dad needs and that they would find placement.
Dad is finally getting the help he needs. They have heard several versions of how he fell, they have seen and heard how he has been acting (he has a sitter in the room at all times and all male nurses). Now that he is getting treatment for the UTI, he is confused and lethargic about half of his awake time, and he is just waiting on placement.
I feel conflicted. Sad, guilty, relieved, angry. Dad's Christmas presents are wrapped under the tree and he may not even be allowed to have them depending on where he is placed. Yet I know this happening is the best gift he could have received as he will have the care he needs.
Helpful Answer (6)
Reply to Kryste
Report
SnoopyLove Dec 20, 2020
This is a fantastic update! So glad to read this.

Yes, your father’s illness is sad and tragic but kudos to you for doing what’s necessary to help him and protect yourself and your family.
(2)
Report
See 1 more reply
I am sorry you are going through this difficult situation. Please ask your self these questions:

1 - Are you, your fiance', your son safe with your dad's volatile outbursts?
Does you dad try to hurt you or others?
If not, then it is time for dad to be cared for in a long term care facility.

2 - Are you, your fiance', your son and your father able to get basic needs met to stay healthy?
7-9 hours of uninterrupted sleep, 3 healthy meals, time for your own hygiene and care needs, health appointments and treatments, time to pursue hobbies and social life....
If not, then it is time for dad to be cared for in a long term care facility.

Sometimes the road to getting your father the care he needs - especially with psychiatric issues - is a hospitalization. Next time your dad threatens you, please call 911 to take him to the hospital for an involuntary admission to an inpatient psychiatric unit. With COVID, you most likely will not be able to visit him in the hospital. When social work contacts you about him, ask them to help you place him in a facility. Note: he will most likely not be able to have visitors for 2 weeks in a facility while they quarantine him for COVID. Most facilities are willing to make arrangements for you to have contact/visits after this 2 week period with "window visits", phone calls, "porch visits"...
Helpful Answer (5)
Reply to Taarna
Report

Have your Dad declared incompetent since his brain is affected and is not responsible enough to take care of himself! Good luck! You have a future that your Dad will ruin, maybe on purpose. He was never perfect and never will be which means he is always right. We were taught that our parents knew best. They did not always know because they too were raised by imperfect parents and so the cycle continues!
Helpful Answer (4)
Reply to Ladyrosalind
Report

The next time your dad has to go to the Hospital, after he is admitted. let the Hospital know that you will not be able to have your dad back to your home, thst you are not able to care for him and talk with the Hospital Social Worker and let them know that your Dad can not be safely discharged to your care tgat they will have to find a home to zdmit him to.

Ans under no circumstance should you have him released to you.

They will have to find him a place because he can not live by himself and he has no other place to go.
Helpful Answer (4)
Reply to bevthegreat
Report

See All Answers
Ask a Question
Subscribe to
Our Newsletter