Anti psychotics can cause a intense feeling of restlessness and the inability to sit still. This describes Lisa to a T. It has been a major problem as she has not been sleeping, will not sit still, just continually walks and becomes completely exhausted. She now is walking hunched over at the waist a disaster waiting to happen, major fall a couple of weeks ago big bump, split forehead side of her face is still yellow. Well we ended up in the hospital today as blood work showed an infection but dr at hospital said not that major quick dip showed possibly uti but not sure so sent her back and treating her for that. Hopefully this will make a difference.
Have meeting tomorrow with dr. Trying to get a handle on where we are at facility said pre palliative in other words if things don't change we will be looking at a palliative situation soon. Also meeting with SORT team tomorrow, health nurse, neurologist, team that advises dr. Right now they are at a loss thinking possible Akathisia so thinking of changing meds possibly removing some of the meds maybe even trying medical marijuana. I have always thought the less meds the better don't want her snowed but also saying now sedating her more may be a good thing she needs to rest and she needs to be at peace. Also gave permission today for them to use seatbelt to hold her in a wheelchair. She has not been using a wheelchair but she is a major fall risk so how do we keep her from not moving And falling?
One other major problem I just don't need and I need to straighten out tomorrow could be a major confrontation I hope not just a misunderstanding but will see. In 2013 we had Lisa sign a representation agreement giving SIL the power to make medical decisions for her. Planning ahead this was in place in case something happened to me. SIL pulled that card yesterday wirh SORT and wirh facility so when nurse called saying Lisa going to hospital she had been told she was to call SIL as she was who was to be called for medical decisions. So SIL made decision to send to hospital then I was called I was livid. Decision was right but that is not the point. So this meeting tomorrow among other things is to straighten that out. I set this up SIL will be there as want all the players in the room so no misunderstanding just hope this is just a communication problem. This is why I am writing this at 3:30 in the morning can't sleep and this is bothering me. Don't need this.
Doesn't the representation agreement indicate that SIL has control only if something happens to you? Anyone who knows you must be aware that you are the primary caregiver, not SIL.
just going to wait and see what happens today. Yes everyone knows I am the primary caregiver but the agreement was signed with the understanding that it would only see the light of day if something happened to me. Could be big error on my part we will see mention this as a caution to others. Did it ourselves instead of having a lawyer draw it up.
I am sorry you are having this conflict. Sounds like maybe you need to take some legal action to have it change or amended. Will you SIL agree that she only has a say if you are unable to?
My husband's DPOA had me as primary. If something and only if something happens to me does the second in line have any power.
In the U.S., durable powers of attorney (or health care proxies) designate a primary decision-maker, and in the event that person is unable to perform the duties, a second person.
It sounds like the "understanding" you mention was not in writing. I don't know what the practice is in Canada. If the POA names someone other than the next of kin, it could be or if the law presumes the next-of-kin is the primary decision-maker, or it could be that the written authorization removes the next-of-kin from that position. I hope you can work this out.
Things are worked out a lot of unnecessary upset over this. I was not comfortable with this agreement in the beginning but didn't question it as our discussion was clear only if I was not able would thus come into affect. Silly me. Well today got the players together focused on our care plan then health care worker raised the issue as it was brought to their attention. They all know I am the one but by law they have to follow that agreement. So stated the intent of the agreement and that was the condition under which Lisa signed it. SIL agreed so that was enough for the case worker to say if that was the intent then I am the primary with SIL the backup. She was hesitant saying but this a legal document and it gives me the power so I am concerned, case worker said that is fine ensure my notes are also legal documents and the intent has been made clear and agreed to. We basically are on the same page the rubber will hit the road as we move forward and if we agree. I know Lisa does not want to live this way made it very clear she said many times before I get near the end I am just going get some pills And OD. I do not want her to continue with this torment for any longer than she needs to. Most of the meetings today were around what to do we made some good progress and have a plan in place and the goal at this point keep her safe and keep her comfortable. Hopefully there is a uti and treating it will result in a positive turn around.
Thanks for letting us know. I'm glad your SIL admitted Lisa's intent was to keep you as the primary decision-maker, which allowed the case worker to back you up. I'm hoping that this aspect of Lisa's care will not come up again. Your path ahead will be hard enough without the anxiety of a legal dispute.
Well it is a new day and SIL emailed case worker to say she didn’t agree with. Her summary what ever that means. So case worker phoned me today all medical staff understand situation and we are at a loss as to why this is happening. She suggested getting a Commandier agreement supersedes other agreements so off to lawyer, but would take months and a few thousand dollars and create conflict. So right now I have always operated with the idea of massaging the situation trying to get agreement rather than creat the conflict, then when necessary act so that is what I am going to do. If we come to a fork in the road where we do not agree that is when I will move I will get into the power struggle. Right now the staff will be taking direction from me which is good. There is a meeting tomorrow where we will be looking at the meds and possibly changing them if neurologist feels Akathicia may be occurring. There is also different levels of intervention, ie when they send to hospital. I know Lisa’s wishes she never wanted to live like this she wanted to die rather than this. So I am going to change the level of intervention to do not send to hospital but treat within their means at the facility. If I dont’f have agreement then we shall see. The agreement states that they have to act in the patients best interests and carry out her wishes. Those are her wishes. Also they have to act in an honest manner, they are not doing so if they feel they can make those decisions against my wishes. A monitor is in place in the agreement and they are to act if they feel the representative is not carrying out Lisa’s wishes or not acting in an honest manner. Well they are not acting in an honest manner as they know the understanding it was signed under and the intent of the agreement, only to be used if I was no longer able. So the monitor totally agrees. Hopefully all will work out and I don’t have to go to this length. Wish me luck. I. Should be writing about Lisa not this crap. She is doing a bit better eating a bit better and seems a bit calmer. What a journey.
I would spend as much time and money as necessary right now to protect Lisa and yourself. Frankly, I'm much more concerned about you. You could be caught in a crazy-making situation. I got a letter just today from the trust company who handled my husband's estate in 2011 and learned of yet another loss of thousands of dollars to me. "Hope for the best, prepare for the worst, and carry through." (Robert Schuller)
Maybe have a document drawn up and at the next joint meeting bring the subject up again. When she agrees the original intent, then have her sign the document with the staff there as witnesses. (not sure it would work but sounds good in theory)
Like Mary I can only see more trouble down the road. I am glad the staff knows the original intent. this is a good lesson to us all and to let others getting their paperwork in order, make sure it clearly states the conditions. Do not give your power away even if it sounds innocent. We all have heard horror stories of best intentions going wrong. When my FIL died and we went to sell the house we got burned. I never trusted my BIL and he proved it by the day before closing coming up with a few thousand dollars in property taxes he had paid on the house. He told me it was coming out of my FIL SS before Medicaid too it. We had no choice but to close or face 'breech of contract' with the buyer.
What exactly is a "Commandier agreement" and who exactly would be signing it? (It sounds like Lisa is no longer competent to sign anything.) Maybe you should ask a lawyer exactly how much this would cost and how long it would take, just in case you need to go that route. I hope you don't but you might as well be prepared.
Myrtle went to the lawyer first thing this morning after talking with worker. NOt exactly sure what it is but you need to go to get a court order in place sounds like you need to show incompetence and that you are the person who needs to be in charge then it supersedes Poa and representation agreement a few thousand dollars and a few months to get it done. HOwever will cause conflict What is the point at this stage? JUst work with what i have no time right now for this type of conflict. Right now all medical staff involved agree I am the person, sil admitted that in meeting now is trying to resident, but agreement is legal document so if challenged they are in a difficult position well just going to plough ahead then will deal with it if needed and see how staff react. I am getting my ducks in order. What i always use to tell my students. It doesn’t matter what you tell me it matters how your feet move. You all i think have seen my sensitive side but I am no push over have dealt with many tough situations but it is much more difficult when it is your life isn’t it. This is consuming too much of my time and energy. Why?
Is what your lawyer referring to legal guardianship? I found it to be pretty straightforward to get and not that expensive. You work with the Public Trustee, and of all the people I had to deal with trying to straighten out the tangled affairs, I found them to the best. They werre concerned to protect my husband's rights, and since I was, too, it was a safe place to be. They have no other agenda such as money (which I considered to be the prime motive with my husband's family). The matter was settled in the B.C. Supreme Court in July. That was 4 months after my husband's bank accounts had been cleaned out by his family in March.