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PrairieLake Asked May 2019

How do you cope with second-guessing the decisions made?

To me, this is the biggest emotional drain. All 7 of us siblings agreed about getting guardianship after Dad was evaluated in a long hospital stay and it was determined that he did not have the capacity to make his own decisions. He has vascular dementia and was sleeping on the floor in his apartment. He was unable to make his phone work, or his cable TV. He was hoarding, wouldn't shower, wouldn’t let anyone come in to clean. He refused to take the senior shuttle. He was walking miles to vote, or to go get payday loans, had so many bills that he refused to pay, because everyone was wrong and he was right.


So he was in a pretty good nursing home, he had access to an outdoor space. But he removed two alarms, and left the facility three times. Once he said he walked the 6 miles to a woman’s house at two in the morning and no one knew where he was.


Then the nursing home said they could not keep him. My brother had to make a snap decision, and Dad was moved to the worst possible place for him. A locked ward on a behavioral wing of a not nice facility.


Now he cannot go off the ward unless there is a staff member to take him. He cannot go outside. He is extremely angry at all of us. He is also getting aggressive to the other residents because “they are all crazy”.


My sister goes to visit him every week, and he puts her through an hour of calling her stupid, a criminal.


All of us keep talking to each other with the “what if’s.”


“what if we would have left him in the apartment to die there?” “What if we would have let the state appoint a guardian? “ He is 91 now, and he is in hell. He is delusional at times, then at other times he has perfect memory. His memory about all the events in the past two years is not accurate at all. He really doesn’t understand why he is where he is.


It just seems like however much we talk to each other, we still are saying “What if.”


Before someone says we never should have put him in any nursing home-know he is an alcoholic with brain damage, very aggressive. None of us could even be in the same room with him for more than an hour.

DeeAnna May 2019
"What if's" are SOOOO hard to get rid of.  We humans have this terrible tendency to relive & relive & relive AND rethink & rethink & rethink EVERY decision we make.  Unfortunately, sometimes we need to "JUST LET GO!"

Even though your Dad "was in a pretty good nursing home---he removed two alarms, and left the facility three times".  That is a HUGE liability for the nursing home (AND for the RNs and LPNs) as they are responsible for him.
"What if" he had gotten sick or hurt or died while he was gone, your family could have sued the nursing home (and the RN or LPN "On Duty") for NOT DOING THEIR JOB! 

"What if" after your Dad removed the alarms, and another resident had gotten out the door while the alarm was broken and had gotten sick or hurt or died--That family could have sued not only the nursing home and the RNs or LPNs working when that resident left the facility; but also YOUR FAMILY (because it was your Dad that broke the door alarm).  The facility could have lost its license and be forced to close its doors. The RNs or LPNs working when your Dad or another resident left the facility could have had their RN or LPN licenses put on Probation or Revoked, thus no longer being able to work as nurses.

More than once, I have lived the nightmare of a resident at a nursing home walking out a door that had a broken alarm.
For Example: 
One night around 1 AM, a resident wearing only a nightgown opened a door to the outside that had a broken alarm on it (none of the nursing staff were aware that the alarm was broken).  She was looking for the bathroom and got confused.  At 1 AM, it was snowing out and the wind chill was minus____ degrees.  The resident walked around the building and tried to get into the building through a different door.  Luckily a nurse heard the resident knocking on the door and was able to drag the resident inside that door.  Even though the resident was outside for approximately 10-15 minutes, she suffered frost bite to her toes (she was barefoot) and her fingers. 
(Wouldn't you feel terrible if something like this happened because the reason the alarm was broken was because your Dad broke the alarm on that door?)

I know that this is NOT what you want to hear-- 
Your Dad has to be in a facility where he is SAFE FROM HIMSELF and from HIS OWN ACTIONS!  He has to be in a facility where the OTHER RESIDENTS ARE SAFE from your Dad's actions. 

Your Brother made the best choice that he could at the time.  If you and your siblings can find a better facility that can keep your Dad safe and prevent him from removing alarms or from doing something that could result in injury to the other residents, then talk it over and make a decision.  Don't keep moving your Dad from one facility to another as that will only make him more angry and confused.

Tell your sister that she does not need to visit your Dad as often or as long because she is not his "verbal punching bag".  Your sister needs to take care of herself.

You and your family have a very, very difficult situation to deal with and no matter what you decide, someone is going to second guess that decision.  Allow yourselves the privilege of accepting the fact that your Dad's brain is broken because of the alcohol and that you are doing the best you can in a terrible situation.🌷

{{{HUGS}}} and Prayers 🙏

Isthisrealyreal May 2019
I think that you just have to realize that you did the best thing you could.

What if's are so useless imo, what if he walked in front of a car that swerved to miss him and killed all the people aboard 3 children and their grandparents? See what I mean?

His choices have led to this consequence. He will not be okay or happy anywhere, his brain is broken.

It comes to a point that we can only provide for their needs and disregard their wants. Nobody wants to be in a facility, nobody wants to have dementia, but it happens and we do what we must.

Stop beating yourself up. He's fed, safe and warm, that is good.

Tell your sister to stop subjecting herself to the weekly abuse session. She doesn't deserve to be beat up for caring. Make sure he gets a visit that is short and rotate, with 7 of you it should be pretty easy to only see him every couple of months.

Good job protecting him from himself, it is difficult but the right thing to do.
PrairieLake May 2019
Thank you for the good advice. When I said 7 of us, 3 of us live far away. Only my one sister goes to visit. My brother who is guardian goes to the nursing home, but does not visit Dad. Dad has pushed him, taken a swing at him, and my brother keeps talking to Dad like he is a rational human, trying to use reward and punishment. My other sisters won’t go because of the verbal abuse. And they suffered plenty when they were young.
The one that is going said she will go as long as she can stand it.

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Countrymouse May 2019
Your father is leading a dog's life. He is very angry about it. He is a risk to himself and others. He's there because the alternatives, certainly at the time of deciding, were worse.

There is a very famous cartoon from World War One, of two soldiers standing chest deep in mud in a shell crater. Bill is saying crossly to his younger companion "well if you knows of a better 'ole, go to it!"

What's your better alternative? What your family is going through is horrible. I think the best thing I've read about your situation is that the seven of you are agreed that you will do your best and pass no judgement. If there were better options, you would agree on that and take them.

There just aren't, and it is not the doing or the fault of any one of you. God willing, as time moves on, your father's mental state will alter and he will adjust, and there will be a phase when more of you can have contact with him. I hope that's something to hope for, but even if it never happens it *still* isn't something you can help.

Grandma1954 Jun 2019
There are Memory Care facilities that are nice(er)
The one where I had my Husband for Day Care as well as for Respite was locked but there was an outside area any of the residents could go to. Most of the Memory Care facilities around here have the very same thing. The resident can not leave the fenced area though. ( there are outing that they go on supervised of course)
Look around for a facility that is still secure but has an outdoor area where he can walk.
As to the aggression is it possible that it can be controlled with medication? It may take a while to find the right medication and or the right dose but it is possible.

Also you say he is delusional but at times his memory is perfect...but then you say that the memory about the last 2 years is not accurate at all... This is not perfect memory. This is the way Dementia is.

Main goal is to keep him safe and secure..keep others safe as well.
Part of the broken brain..he will rage out..he will "hate you"...he will try to escape...
You did the right thing to keep him safe from himself.
You want to make decisions with your heart but sometimes the decisions must be made from the brain. (when caring for a loved one sometimes these two organs seem to be contradictory)

Segoline May 2019
Ok.,deep breath. Oh the what if.,I know that well,most of us do.

What was in your power to change this? Help, finances, logistic arrangements?

Many of us have made the noble promise, only to find we could not keep it.

Stick around. You will get some good answers from the trenches

Take care of you. By all means.

Eta.

You are going to get some shock therapy here. A real dose of reality.
Don't run off. This is hard. Really hard.

kemahe May 2019
Oh I feel for you. I think you have done what you need to do to keep your dad safe and by the sounds of it everyone else safe too. Its a sad situation for you all. Take time out to take care of yourself

Jasmina Jun 2019
Im sorry that has happened to your family. You did the right thing. He needs to be in a locked facility because he is a danger to himself. He is also very smart to be able to escape and walk that far. Hes a real 007. Lol.
Id see if I can help brother find a better place. It still has to be a locked facility because he can escape. Ive heard of people on the news leaving the facility in cold weather and getting lost. Not good. You dont want that to be your dad.
Id ask doc if he/she can do something. Your dad may have depression. It doesnt always manifest as crying, sad, loss of interest. It can come out as rage, cursing, anger all the time, resentful, blaming others, physical altercations etc. May need to add/adjust meds. Isnt it better your dad be calm and happy then angry and rageful at the world?
Your dad has moments of clarity where he knows he is in failing health. Sometimes they want to blame others. It is easier than confronting the reality that their health is failing. That can be very scary.
I dont blame your family for not visiting. It is stressful to be berated, or cursed at. Dont feel bad for wanting to protect yourself from that. That is soul crushing and no one should be subjected to that.
If you can find him a place where he is cared for then that is all you can do.

dlpandjep May 2019
I am so sorry for your painful situation.  None of you deserve to have to make a decision like this.  Fact is, something had to be done and your brother did what he felt was best at the time.  Stop second-guessing.  If you collectively decide on another arrangement, fine.  If you decide to leave him where he is, you need to accept your decision and try to move on.  That's easy for me to say - I'm not in your shoes.  I pray you can find peace through all of this.  ((Hugs to you PrairieLake))
PrairieLake May 2019
Thank for your hugs. It helps to know how other people deal with the hard decisions.
I think I need to go back to the support group. Even though I am 900 miles away, I still love him and hate to see all of us suffering. We all agree to remain a united non-judge mental group. That is the easy part.
MelissaPA2AZ Jun 2019
I too am so sorry to hear about what you are all going through. It is so very important to be kind to yourself as you navigate this most difficult of journeys. Try to practice saying to yourselves and each other, “We all have been and are doing the very best we can given the circumstances,” each time the “what-ifs” start. The truth is, nothing is ideal. You’ve all experienced enough abuse from others, try not to heap it on yourselves (easier said than done...takes practice to break old habits). For some of you, the best you can do is support each other, and that matters just as much as anything. Also, any one of you may experience your own best will vary from day to day. That’s OK too! One thing my sister and I have done now that our parents’ dementia has progressed to the point where nothing brings them joy, we have signed papers asking for nothing but “palliative,” or comfort care. If pneumonia takes them, so be it (the uncomfortable symptoms will be treated, but not the illness itself). We have stopped the meds that protect agains heart attack...if that is what takes them, so be it. I don’t know if this would work for your family. I’m just putting it out there as something to consider. Sending you wishes for wisdom, clarity, comfort, and peace. (Hug each other every chance you get. It really helps.😊)

TNtechie Jun 2019
At some point, you need to acknowledge the best decision was made in the moment with what was known in that moment. Later we have more information, sometimes about the illness, sometimes about the options, sometimes about the treatment results - all things we could not know in the moment the decision had to be made. Forgive any imperfect decisions and/or any imperfect results. Forgive your father for the choices he made that contributed to his current circumstances; forgive him for the behaviors the disease forces without his choice or consent.

Try to focus on the presence circumstances and any future choices. Can you find a affordable facility that allows your father a little more freedom (at least the appearance/feel) than he has now? Are there things that would provide/provoke moments of contentment? Would you father enjoy receiving a "treat" package with some favorite cookies or a box of ultra-soft kleenex or some socks? Would you and/or your distant siblings feel better for sending a package periodically? Does the facility have a store/canteen where you can arrange delivery of a 'treat" (like ice cream or a soda)?

When vascular dementia and other health issues forced my father into MC, I visited once a week because that was all I could take. I took offerings of his favorite foods and other stuff he needed (soap, lotion, clothes). I know Dad did enjoy his treats, but I think I also prepared and took them because doing something/anything was comforting for me.

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