Husband has, over past few months, exhibited increased sundowning that includes intense agitation, paranoia, confusion, delusions and violence. I have called 911 five times, resulting in two multiple day hospitalizations. This last episode, I was hit in the jaw with a closed fist as I tried to calm him while in bed. He was put on 100 mg of seroquel and depekote given three times daily, to help calm him. I have followed dosing guidelines explicitly, but though he would go to bed easily and fall asleep soon, he would then start waking, getting up and dressing himself and becoming very physical. This latest admission resulted in multiple meetings with doctors, social and case workers with my trying to involve his oldest child as the spokesperson for husband's side of the family, in all conversations and two conference calls, also asking the social worker to call her personally to allow her to ask questions. His daughter is a home healthcare planner at a major hospital nearby. Until now I have felt, as the POA, that I had everyone's support. But upon finding out that the decision had been made to place husband, at least temporarily, in a skilled nursing facility for rehab and further evaluation, they are now attacking me as an uncaring person trying to warehouse him. I am devastated.
I may be too cynical, but from my own experience, I truly believe that "No good deed goes unpunished" especially when caregiving.
It is understandable that you feel devastated, this is your husband, and you are not the enemy. You are trying hard in an untenable circumstance. It is not okay to live with physical violence. Your husband's care is beyond what you can provide (or any one person for that matter) at this time,
You say the decision had been made......who made the decision?
You do not have to give up any rights to make decisions for your husband just because you have asked for help from husband's side of the family. imo.
Maybe sharing less with them will help. You need a loyal support base, not criticism, imo.
You are NOT the enemy. You are his wife. With that role comes the responsibility to also take good care of yourself.
Your husband made you POA for a reason. The decisions are yours alone. I would not give his family any more info since they acted this way. His ex is not entitled to any.
You are very hurt, but if you can, just cool it for a few weeks. Don’t back off, but give them time to get to where you are at. If it stays possible for the relationships to improve, it is in the best interests of you, your husband, and his children. In the longer term, these relationships could and should be supporting both of you.
Turning on some music, trying not to be over-solicitous, walking outside-allowing dH to regain his self-control, calm himself, or just go to sleep may help himself.
I realize your question was about how to get family members to understand.
You should not waste your time, emotions, and efforts on that useless pursuit. imo.
Take care of yourself.
You are and have been a caring a devoted caregiver. He needs full time care from young , trained and rested professionals. He needs for his medications to be titrated. In short, he needs to be someplace other than home with you.
Try not to be devastated by their reaction. You don't need their approval to do the right thing.
With all you have to worry about I suggest you don’t waste your time and energy on trying to convince the family that you’re doing the right thing.
Be secure in the facts that you have been an excellent caregiver, you’ve gone over and above to keep them informed and be secure in your decisions.
If there is going to be flack from the family they will have this issue or another to create chaos.
It seems that many families do this sort of thing because they’re having trouble accepting reality, Imo. It’s easier to make you the bad guy, than it is to see their dad diminished.
Be strong and don’t let them make your job harder. Let them step up and DO whatever it is they think you should be doing or just don’t let their opinions affect you.
Good luck,
charlotte
She came for a few hours and I went for a hike.
After I was on the trail for an hour, I got a text asking me to come back. She was not 'able to handle' helping her father change his wound dressing, it 'grossed' her out.
When I got home I simply got to business and took care of things. She commented "I don't know how you do it." And never came back to help again.
Now he has Dementia and she comes to visit for a couple of hours every 5 or 6 months. However I have asked her to come and stay for 3 days this winter.
No one can walk in your shoes.
You need to take care of you.
Is he taking his medications..or spitting them out when nobody is looking. Or refusing to take them. There are injections such as long-term haldol they can give if he is refusing medications but a psychiatrist would have to prescribe that.
I don't see how rehab can help if he has outbursts of violence which would put staff and other patients in danger.
The doctors would have to rule out a physical cause for violence such as underlying infection.
Tomorrow my brother will visit my parents for the first time in their new home at the long term care facility where I placed them last month. Mom turned 96 last Tuesday and has dementia but still my brother can't understand why it was necessary for me to move 'quickly' and put them in after Dad had been taken by ambulance for the second time in a month. The first trip to the hospital had required 15 stitches after Mom had pushed him, the second...he was trying to help her up after she had fallen and once again she didn't know her own strength and he fell again. Of course he won't admit to the family that it was Mom's outbursts that caused the problem, so my brother is of a mind that we should wait to place them in a facility nearer him even though there's a 3 year wait.
I've tried to explain this to my brother and his twin has done the same. Unfortunately he is a stubborn man and hasn't seen our parents in six months even though he lives 3 hours away and I live 9 hours away in another country. It's escalated to the point that I've blocked him from texting me so that I can do my work for my parents without having to deal with being bullied by my brother.
Bottom line is armchair quarterbacks seldom get bruises and they sure as heck don't know what it feels like to be on this playing field.
I’m sure you are not aware of this, Nana58, but I just wanted to mention that these days, the use of multiple parenthesis (((3 of them like this))) is being used by white supremacists as a coded way to indicate someone is Jewish, as a way to disparage them.
You may want to reconsider using them this way, if you don’t want others to mistake you for a white supremacist or sympathizer. As I said, I’m sure this is not your intention, so I just wanted to make you aware of it.
My response: "A mentally stable person would never say that."
Perhaps it's denial...or the fact that they are not living the experience like we are. But I am choosing to stay in my own power...which at the present time includes going no contact with my mother because her verbal and emotional abuse towards me has hit an all time high.
I honestly believe that none of us were prepared for this longevity we are experiencing with people living so long. I don't know what the answer is...other than for myself, I will continue to take care of myself physically and mentally so that I can perhaps ward off some of these issues and not be a burden to my children.
making people understand the dangers is useless unless they’re ready to accept the diagnosis- and it doesn’t sound like it at all. and it doesn’t seem like it.
His eldest daughter already knows the “system” so she, like the rest, should be supportive because she understands “care” over “warehousing” someone - but when it’s your own, logic goes out the window. are people. it’s much easier to attack you and call you crazy then him; you’ll remember it, he won’t.
That said, you aren’t warehouseing anyone: evaluation is just that, determing a different level of care. How your family (and extended family) deals with it is their own mourning process to the person he used to be, you, living with him? You’re further along in your acceptance that he needs different care.
They can be in denial right up until the last minute... but tragedy happens when people rather not. You’re not uncaring, that’s ridiculous, and a knee jerk barb from them....you have the punch in the face to prove it and multiple police calls. You don’t need to be in the hospital yourself to drive that point home to immediate and extended family..nor do they need the police or APS involved over their now “awakened” response to his care.
Youre doing the right thing for him...him and you... and that’s what I’d stress. Quality of care determined by skilled staff is their job... that’s something his daughter should appreciate since she is in the ‘warehousing’ ...er “medical field” herself and you would “welcome” any suggestions to his quality of life and enjoyment. What you won’t accept is guilt, violence, and care beyond your skill set...see what I did there? ( smile) you cant help your family; and please remind your family that he’s a human , not a package being stored in a facility. You have no plans of relinquishing your love for him, just the caregiving part of this situation if the doctors state that.
but that’s what they were...
it it is not the person they are now; the diaper wearing, confused, prattling, shuffling, cursing, violent, refuser to eat anything or eating everything like a bottomless pit...and throwing it up only to eat more; cause they forgot they ate... glazed eyed, drooling person they are now...the one the doctor diagnosed as Alzheimer’s, or any other mind altering disease....
what you see and what others see will always be at odds, so the sooner they accept your words (or the doctors) the sooner they will accept your POA or any other care offered. You just can’t rush whet he/she is now... over a lifetime and album of memories each person has of them, but you can help them see it’s not a trick by affirming what the medical profession states
What have I learned from this experience: 1) I've been a caretaker most of my life, but taking care of someone with dementia is a full time job in itself no matter how much you love the person, 2) caretakers can get weary and resentful, which ruins a relationship with a loved one - you have to take care of yourself before you can care for others, 3) if someone hasn't walked in your shoes and doesn't offer to try, they don't have the right to judge.
Bottom line: Do you know in your heart that the best thing for your husband is for him to be in a facility for either rehab/evaluation or long-term as may be needed? Do you love him enough to ensure he is cared for in the best possible way - even if that means it's not you providing the care? If so, follow the path you know to be right.
You are not uncaring, you are doing everything in your power to make sure he gets the help he needs!
Mom thought it was guilt felt due to lack of involvement in his life. His daughter had recently ceased communicating with him and saw what was happening when she came to check (insisted and assisted in finding a place to care for him). His son didn't realize until he visited him at his new home. We visited daily and took him to doctor's appointments, it was very chaotic until he passed in 2015. Rare visits by others, none by most.
"Pa" was the most docile, kind, non-aggressive person I'd known until the disease took over his personality.
Unfortunately, I decided we couldn't alter opinions of others and focused on doing the most we could to insure Pa was as safe and happy as possible. Knowing that helped and if you're sure the action taken is your only option, I hope you can be at peace with it and ignore the haters. Ignorance and refusal to accept the diagnosis fuels their hate and hopefully they'll be able to come to terms with it.
Just wondering - does his family think it was okay to have you in a physically abusive environment? Shame on them.
Take care of yourself.
Yes, it's a tragic, depressing, infuriating, unbelievable disease that you have no control over. Please find someone that can remind you daily that you're doing the best you can under the circumstances.
Interesting, I recall my Mom not feeling guilty but angry that it happened so they couldn't grow old together (both in their 80's at that time).
You are the person who has ALL medical decision rights, the others don't have any say in the matter.
Ypu have this right BUT you will still need to get GUARDIANSHIP/CONSERVATORSHIP. Sounds crazy, but you do before ANYBODY ELSE DOES THIS BEHIND YOUR BACK!! 1st get a letter from his MD stating everything that is mentally/physically wrong. In your case, get copies of all the 911 calls and police records. You can research for a REALLY GOOD NOTARY who knows as much or more than an attorney so you can represent yourself (I did this for my Mother). There will be a background check by Court AND ONLY BLOOD RELATED PERSONS NEED BE NOTIFIED. This is very important because they will contest, but 99.9% their testimony will not impact as long as you have all you ducks in a row. Have you kept a diary? I have 1 that goes back 5+ yrs, so even IF my siblings tried to contest, I had everything to backup my being the better of 4 having Mom's best interest. They ALL signed off that they would not contest, BUT that doesn't mean they can't in the future. MY STEP-SIBLINGS are my problem. Oldest petitioned to be telecom/her attorney present during my hearing. I objected but was denied. This had absolutely NOTHING to do with my step-Father and they're not blood. You can get EMERGENCY GUARDIANSHIP too. DO NOT LET THE STATE SERVICES TAKE CONTROL. YOU WILL BE REQUIRED TO PAY DOWN ALL ASSETS HE HAS THEN YOU WILL OWE THE STATE ALL THE MONEY THAT WAS SPENT. IS the deed to the house an and/or? If or get it quit claimed and then in your name so the STATE CANNOT force you to sell. IF he has a Will, read it because you can't change it. Read up on Notary Law too. People don't realize that State Government can change these requirements! In AZ, if you have a copy of a DPOA and a copy of the Will indicating he has you listed to take care of him both medically/financially you can still have it notarized with your proper ID. This DOES NOT MEAN it must be accepted by 3rd parties i.e. banks. THIS was a problem for me because #1 step-sister stole $50.000+ from Mom using her DPOA fraudulently AND having the bank file a report on me for Elder abuse for financial gain (very long story, but she lost that one). I represented myself in Court, taught 2 attorneys/Judge a few things about Community State Laws, then I hired a Family Law attorney. Saved $300 hr fee. I had family witnesses if needed too.
NOW I am having to provide info per Court order to #1 ugly step-sister that I already did, but she's not happy and with holding money owed to Mom's Estate. YES it is called Estate even though person is alive. I am writing a novella which includes copies of emails showing she made decisions, took money etc fraudulently to my attorney, Court Fiduciary and her attorney. She has dug herself into a hole and keeps digging.
I hope this helps you in some way. It's going to be hard, but you need to protect your husband, yourself AND THE ASSETS!!! NOW