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.
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.
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.
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.
I am so sorry. I hear about ER dumps but I have known of cases where the nurses were instructed to put a patient in a cab and sent them home.
He has lived with you. Your house is considered his home.
"One of the most notable difference between a psychologist and a psychiatrist is that psychologists are not medical doctors. They do not have a medical degree and are not trained in general medicine or in prescribing medications."
To check for a UTI, you might be able to call his doctor and ask them to order a test, and allow you to pick up a sample cup and drop it off once filled. This saves your dad a trip to the office. The docs for my parents allow this, and I sure do appreciate it! Of course, then you may have a struggle collecting the sample at home.
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.
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.
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"...
You are allowing a person with dementia to control the situation - and this will never work to anyone's benefit or optimal health behavior.
Your dad cannot help it.
You need to come to a realization that there is just so much you can do - and if your dad continues to 'fight' you need to let it go.
Sounds to me that more meds would work to his benefit - and to the family who cannot get enough sleep.
I sense that your family needs to get into interim therapy with a therapist or social worker to learn how to manage his care - and not be drawn into a swirl of a deep black hole.
It seems like your dad needs restraints and needs to be placed in a home.
You owe it to yourself and your family to take charge and make decisions in the interest of everyone. If you get caregivers and your dad denies that care, so be it. We / you / no one is a magician with a magic wand. You need to learn to let go and focus on the well-being of yourself and your family. Gena.
If he has no money, I'd call 911 the next time he's particularly aggressive or behaving bizarrely. You're putting up with a lot of intolerable behavior, so you've gotten used to it, but it's not normal and you don't have to tolerate it.
If dad won't temper his behavior, next step can be Medicaid and a SNF (if he can't take care of himself independently) or maybe a subsidized apartment with some home care from Medicaid.
You aren't required to take abusive behavior simply because he's your father and needs help. He doesn't get to dictate how you help him.
A 10 year old can not be exposed to this.
Have you talked to an elder attorney? If so, what have they advised?
You saw that your dad has a diagnosis of vascular dementia and behavioral disturbances. What about using an elder care attorney to help you get guardianship and then immediate placement?
(26 year career EMS).
The best of luck on this journey. You have many blessings in your life with your son and fiancee. That is your focus that is your life, go live it. You have been a wonderful daughter and we can not fix our parents once they become so broken.
Keep us posted and all the best.
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.
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.
Dad may be better mentally after the UTI is treated, but that is certainly tip of iceberg. As to a person threatening to send Dad home when you have said you cannot accept him home, cannot care for him mentally or physically, and sending him would constitute an "UNSAFE DISCHARGE " (use those exact words) well that is very unlikely to happen. They will however do all they can to get you to say you will accept him home and they will promise things they cannot provide. We all get how hard now to find placement. BUT they must.
Is hospice being discussed? Dad has already expressed to you he wants peace, he is exhausted and there is little coming but torment of some degree.
As to "guilt" please exhange that word for "grief". You are not a felon. You are a loving and caring daughter doing the best you can and suffering as you see your Dad suffer. That is grief, not guilt. Guilt belongs to felons who do malice aforethought for the joy of hurting people. That's not you. Please don't put that label on yourself; you've enough pain to shoulder. Don't add that. I am so sorry for all you are going through. Stay strong. You will have to for now. You are in our thoughts.
I am staying strong and other than the one lady who threatened to send him home, everyone else has said I am not qualified to care for him as he is and that it would be an unsafe discharge. It makes me feel as if perhaps that lady either didn't have all the information or maybe was just having a bad day.
They are not discussing hospice. At his time he will either go to the adult behavioral unit and then to a long-term care facility or straight to the long-term care.
I have realized is that not having any type of training made this harder. The care I gave him over the last 4 1/2 years was based off of instinct, what I could find online, and asking others in the profession. Honestly, those who don't do caregiving for a living don't understand how hard it is. I didn't and feel ashamed for that now.
A friend of mine suggested earlier today that I speak with a grief counselor. I think that is what I am going to do.