Now even more to deal with

60 falcon

Starting a new post about my challenges in trying to help my wife. I feel like I'm writing too much, sorry if I am.

To briefly recap, on Saturday my ability to care for my wife at home by myself came to an abrupt and unexpected end.  I called for an ambulance to help get my wife off the floor and to take her to the ER to hopefully be followed  by a geriatric psych stay to manage her meds and placement in LTC.  Her delusions, hallucinations, agitation, and anger was unmanageable.  She ended up being transferred to a regular hospital; however, it is part of the same healthcare system as her neurologist who is located right nextdoor. That's a positive thing. It's 2 1/2 hours from home and circumstances require me to be home daily, so I can't stay near her. That makes things difficult.

She's physically ok.  She's no longer sedated and she's currently receiving the same meds as I was giving at home, though her dosing of Respiridone has been increased.  Friday she was walking on her own and now she can only walk just a few baby steps with two people assisting her.  We tried a walker and that's beyond her ability.  We couldn't really even get her to turn or back up in order to sit down... It was more like moving the chair and bed to her.  She's essentially bed and chair bound.   She's lost most of her facial expression, it's like she's wearing a blank mask. She slurs he words. She is being hand fed although I was able to place a chicken nugget in her hand that she then ate.  

While I was there she was more relaxed, less agitated, and there was much less indication of delusions or hallucinations. That's good.

I met and spoke with the hospitalist, her usual neurologist, and a team of 3 other neurologists/ psychiatrists (not sure which). I'm more comfortable with this situation today, though this team of docs are considering a psych ward based on my requests.  It may not happen.  Her neurologist said that the slurring and loss of facial affect is likely due to the meds.  The rest he attributes to a sudden progression of Alzheimer's.  I asked all these docs to consider the possibility of lewy body dementia and they are confident that this is just EOAD based primarily on the PET scan she had back when she was diagnosed.

I'm likely going to be trying to place her in a nursing home with a memory care wing. In her current condition I kind of doubt she'd realize or significantly benefit from the greater social opportunities the AL/MC would offer. 

This part really throws me for loop...  Back up to Saturday when I made the call for help.  A deputy also responded.  I told him and everyone involved that I could no longer safely care for my wife at home by myself.  At the ER, he completed a form that I was told was necessary to allow my wife to remain in the ER until we knew where she was going to be transfered.  I paid little attention as I was too concerned for my wife, just wanted to get her the help she needs.  Today among all the things I'm dealing with I received a call from adult protective services.  Turns out the form the deputy completed was a statement of emergency placement.  Wisconsin state law also requires that a petition for guardianship be filed.  The officer's statement supporting this document says my wife was "...attempting to physically harm hospital staff by hitting them...". It also says she "... is not safe at home with her husband...".    I interpret this to imply my wife had intent to cause physical harm.  I also interpret this to imply that I am somehow a threat to her safety.  Complete and utter b.s.!!  None the less, it seems I am going be required to go to a hearing before a judge to gain guardianship for my wife.  I was told that it doesn't matter that she has a valid existing medical POA naming me as her representative.  

I'm again just dumbfounded that in my efforts to care for my wife for all these years and that I'm now asking for much needed help,  I have yet another significant problem.  So I realize I had no choice but to ask for this kind of help.  But to me it's just another indication that I've failed.  I failed her and I failed myself.  Apparently I don't know how to even properly ask for help.  My feeling of failure is not logical yet it is very real.  I'm not sure how much more burden I can carry.

Almost forgot to add this.... While visiting her, there were a couple times I lost it and began crying.  She actually showed compassion and tried to comfort me. Makes me cry everytime I think of that.

dayn2nite2

That form is a lot less than you are imagining.

You told the deputy you could no longer care for her.  That's all.  Her not being "safe" is because you cannot care for her, thus emergency placement.

Yes, it involves APS because they need to find out what's been going on.  Also because emergency placement is necessary and because it's emergency placement, guardianship needs to be determined (which overrides your POA).

Did APS imply that there's a statement in there that indicates you would harm her?

You are taking on guilt and responsibility that do not belong to you.  When this issue gets settled, she's placed and you are able, please seek out some counseling to combat the tendency to feel responsible for situations that are well beyond your control.

The reason it has snowballed into this is because you have actually kept her home well beyond when she should have been placed.  So you have gone beyond normal human endurance in keeping her home.

Ed1937

Falcon, I agree with everything dayn2 said. I think you are reading between the lines, but you're coming up with the wrong answer. I know you're stressed beyond doubt. That is probably feeding into your thoughts. Give yourself a break. Nobody else can do that for you. Prayers and good thoughts coming your way.

Quilting brings calm

I think you should just continue your course of working with the hospital and the doctor and just let protective services do their thing.  The deputy did the same thing the rest of us have had to do …use the magic words that would keep the hospital from discharging her before they found her a place.  With this document, she could refuse to stay  and she will still be kept.  As to the aggression on her part, that did happen.  It’s one of the reasons you feel you need to place her. I do not think they feel you did anything wrong/ they are just acknowledging that you’ve reached the time  where you can’t take care of her. Hopefully it will aid in finding  you placement.  

You could always ask to be appointed the guardian at the hearing rather than them.  However that would put you back in the position of having to do all the work of finding a place yourself. 

This sort of sounds familiar to jmlarue’s experience with the VA and involuntary placement. I think it was Jmlarue? 

abc123

Dear Falcon, I’m sorry you are dealing with all of this. I hope things get better soon.

In my experience loss of facial affect was due to progression of the Alzheimer’s. She lost it early on but at stage 7 it was incredibly absent. It’s hard to explain. I’m sorry. 

Hoot619

Dear Falcon, Your getting the help she needs and you need it for her. Be thankful for the help she and you are getting.  The deputy's statement should help a lot. To me it sounds like they are doing their best to help her  Will keep you and your DW in my prayers . Hoot

jmlarue

Dear, dear Falcon - I'm in a similar position with my DH in navigating this foreign landscape getting help through Psych treatment. I've had to be a quick study and do my own research for lack of advice from a CELA (can't get in to see him until the end of this month). The reason I asked to have my husband discharged from the VA Psych Unit was because the VA had filed for a court order of Guardianship for him. As I understand it now, it's is absolutely necessary to have that judicial order to involuntarily commit anyone for locked-unit medical treatment. I chose not to let that process play out. Allowing the Federal government to take control (legally) as Guardian for his care would have taken me completely out of his care decisions going forward. The DPOA we hold as spouse isn't sufficient. The only way to remain in control of our spouse's health care and financial decisions is to have that court-ordered Guardianship that makes them our "Ward" and gives us the legal right to make every decision for them (with some legal oversight for our spouse's protection). Don't resist this process  in any way. It exists because of your wife's Constitutional right to due process before taking away her basic human right of self-determination. THIS IS NOT FAILURE ON YOUR PART. This is, in fact, the only way you can protect her and advocate for her needs medically and financially going forward. You absolutely should retain a lawyer to assist you. If you worked with a CELA to get the DPOAs for her originally, make an urgent call to them for help in navigating the Guardianship process for your own peace of mind. If there is delay in getting a lawyer involved, ask the Court for a continuance of your wife's case.

Please do not panic and do not think of this as any type of failure on your part. It is absolutely necessary and becoming your wife's Guardian is the greatest act of love on your part. Last bit of advice, absolutely consider getting your DW accepted into Hospice care. It opens the doors to many wait-listed facilities and expands the options for immediate placement. I got this tip from an admissions director at a VA facility whose wait list is as much as 2 years long. Once my DH is Hospice qualified, he can likely be placed within a few weeks.

June45

Hi Falcon,

Checking in on you to see how things are going.  If you haven't read RobertsBrown post, go and read it.  This is a quote from his post:

"The situation you find yourself in is completely absurd.

It’s not your fault. Nothing in life has prepared you for this. There is no good solution, just as there is no cure for this disease. Your loss is 100% certain.  It’s guaranteed." ...I find it’s important to remember that if you can’t win, you can’t be accused of failure, even by yourself."

60 falcon

There's been so much going on in the last few days. So many wheels turning at the same time and in different directions and the weight of the world is on my shoulders.  It's like everything and a few people are conspiring against me.

There has been some  good stuff happening, though some things are absolutely terrible.  First the good.

 I've e been really really struggling with the feeling of failure.  I'm beginning to see the light, so to speak.  Many of you have given me encouragement which is much appreciated.  Several neurologists, a psychiatrist, and other professionals have said I've gone above and way beyond what they are used to seeing from the caregivers of their dementia patients.  Today a judge at an emergency guardianship hearing said the same.  Most importantly, our two sons are saying the same.  I'm beginning to feel better about myself and the difficult circumstances my wife and I are going through.  Early on in my wife's EAOD, I committed to keeping her home too, just like some in recent posts have said.  Then suddenly circumstances changed and reality set in.  That commitment contributed to the horrible feeling of being a failure.  I'm glad I'm feeling better about that because I think it could have led to suicide. Just horrible.

At today's emergency guardianship hearing I was granted temporary 90 day guardianship over my wife.  We can extend or possibly make it permanent if needed. I don't think it's going to be needed at all but what do I know.?

My wife seemed to have been plateaued at the end of stage six for a long time.  Then last Saturday she fell off a cliff and is now somewhere in stage 7.  Today I met with a palliative doc and we discussed hospice. He said my wife is borderline qualified for it now.  Through him, I began the process of getting her on hospice.  Beginning today, he's going to have her treated as though she was on hospice while she's in the hospital and before hospice is actually covering her.  I asked him the question that's impossible to answer, how long does she have?  He said that based on her current "trajectory" he said 6 months, maybe less maybe a little more.  I've seen her decline each day.  It's so sad.  She's bed bound, being hand fed, trouble holding her head up, etc. 

The process of finding a SNF with a memory care wing that with accept her is happening.  Realistically, it may end up being way too far away from home. I hope not.

I couldn't have predicted this sudden decline.  I had researched AL/MC places and one SNF earlier and even tried to place her a few months ago but now given her circumstances I'm in a position of having to find SNF way too fast with no realistic ability for me to visit or research them.  Exactly what I wanted to avoid but am now faced with.  

I'm driving 5 hrs a day to visit her.  I could keep an assistant busy all day with all the details that I'm trying to deal with, and still finding time to visit with her.  I've lost about 10 pounds this week. Seems like I have to force myself to eat.  There a lot more going on, but this is the "nuts and bolts" of it all.

Crushed

FWIW my wife has been in stage 7 for over 4 years in memory care

Just Bill

Hey Falcon I think a lot of people (me included) have made an open ended promise to our spouses that we had no idea how we were going to follow through on. All of us are going to lose this fight ultimately. I will say again, you are not a failure. You kept her home as long as you possibly could be before being overcome by events. I think your wife would not want you to trade your life for hers. If caring for her is killing you I am certain she would not want that to happen if she were in her right mind. I think when you two meet up again in the next life she will give you a pass for what you are doing and a complement for doing it. Hang in there.

Just Bill

Hey crushed that puts things in a whole new perspective. Yikes. I am humbled by that.

jmlarue

Based on the advice I was given, that Hospice designation should put your wife at the head of the line for many skilled nursing facilities. Talking with the hospital discharge planner with a list in hand of the SNF facilities within driving distance of home would be a good idea. Try to confirm with the discharge planner if it is his/her job to secure an admission or if it is something you must do. If this responsibility falls to you, you may need to forego a day or two travelling to visit your wife to assure that you find a good placement for her near to you. Don't forget to say that she would be Hospice care on admission. Have the name and phone number of the discharge planner in hand and ask them to discuss the plans to discharge her directly with the hospital planner.

Eat and try to get sleep. You'll have to drop the ball if you make yourself sick.

Ed1937

Falcon, it sounds like you have some good things happening. But it hurts me to know you have everything dumped on you in such a short time. Remember that you are only one man. Do what you can, and leave the rest for another time. Your health has to be number one now. I'm sorry.

ImMaggieMae

Falcon, I am so sorry for all that you are going through. You are not a failure, you did the very best you could. I agree with jmlarue about talking with the hospital discharge planner to find a facility as close to home as possible where she could go with the Hospice designation. Are there any Hospice live in facilities in the area? I hope the hospital discharge people will give you a lot of help with this. Please take care of yourself.

Hoot619

Falcon, Please take care of yourself. Looks like you have everybody that knows about this disease backing you up.  The Judge, Docs . Please try to back off on your visits you need some rest.  5 hours of driving and I imagine a lot of what if's going thru your mind going and coming.  Get yourself a few days of rest if you can.  Remember we can't control people places and things even though I often try to. Doesn't work.  Hoot