A stranger in my house

60 falcon

Most days I dread waking up.  I fall asleep the night before hoping I don't wake up, and then I do.  Because I know the stranger is here.  About the only things predictable anymore is that my burdens and problems grow and the stranger seems eager to make everything worse.  I don't like this person and I'm having a hard time pretending that I do.  

I'm past the point of knowing I need to place the stranger somewhere.  I thought I had things figured out until the MC didn't want the stranger either because she's too "needy".  They didn't like her either I guess.  Probably just as well that they didn't take her because her delusions and agitation would've probably caused them to tell me to come get her.  I haven't even been able to schedule an appt with a psychiatrist to deal with the stranger's delusions.  Me and her PCP have been trying to get an appt for two or three months now! The problem is some kind of internal policy or procedural issue.  What an effing joke.  I'd get on my knees and beg if I thought it would help.

I do my best, until I can't anymore.  When my patience is gone and my internal darn* breaks, my mouth opens and I say things that that I wouldn't normally say to anyone.  I think I'm a broken man.  Not only do I not like the stranger, I don't like myself either.

The stranger has this ability to really turn things upsidedown when she has a relatively good day.  Like when she's smiling, cooperative, and almost nice to be around.  Days or moments like that make me doubt and second guess myself.  But then reality comes rushing back.  *#ck!

I could go on and on writing about this problem or that challenge. My list is long.  We're all dealing with our own versions of this hell, I just hope we survive it all.  Even if I survive, I'm not sure I can be fixed.

I'm not sure writing this helped me in any way, but it felt good.  

Quilting brings calm

I’m so sorry.  Our elderly care system here is broken.  No one should be left to flounder the way family are trying to care for our elderly - dementia or otherwise impaired. I feel like they should ge assigned a professional care management person at the PCP’s office.  I know exactly your pain. When my mom had what they called delirium and what was actually urosepsis, the doctors In that  area  were useless.  Not only did they improperly diagnose her, they just shrugged their shoulders and sent us home,  we had to beg for home health to be assigned.  The visiting nurses recommended we place her directly in a nursing home…but no one would help with that.    No matter how much I begged

Rescue mom

A MC said she’s too needy?! That’s so awful. I’ve heard some places “cherry pick,” or only take them at early stages, but…I’m sorry. It’s just awful. Have you tried other places yet? They can’t all be like that. Could you bring in help to give you some break? Or adult day care?

We all need to vent. And I think a lot of us wonder if/how we will function in normal situations…(will I always talk/respond like I do to a 3 yo?) Local support groups found via local Alzheimer’s Association, have been good for that, and for finding local resources, many of which don’t advertise.

There’s another thread talking about the frustrations of the irregular up/down, good/bad days..

Ed1937

Falcon, I'm sorry it's so darn hard. This disease doesn't care who it hurts, or how much it hurts. It just keeps delivering more hurt. Your emotions are easy to understand. I hope you can catch a break soon.

Safta

IF you can, maybe you could keep your DW at home for the time being with help coming in, and your internist could help get some medication started to deal with the agitation. There are some good meds available but it takes a couple of weeks to get them to levels at which there is stability in behavior. If you can get into a psychiatrist, they manage those meds, but if you can get the medications started while waiting to get into a psych doctor that may help. My DH also was delirious during and after a hospital stay -- badly so. They would not discharge him home without care here, for safety. The doctor in the hospital was terrific and started the medications. MC units don't always take patients who act out, but some of them do know how to handle those patients. It is important to push for medications that can diminish the symptoms and give those religiously so that behavior outbursts are minimized. In the meantime, just know that it isn't their fault, and keep advocating for help for you both. Home is best because it's familiar, and help from a home health agency that knows what to do is key -- for both of you. My situation is fluid, and will keep needing adjustments, but thanks to the advice and skill of the nurse at the home health agency, DH is now on the right meds and has the right help, at our home. Hang in there.

Safta

DH is a really proud man, and now in late stage Alz. He also has Parkinson's, and other medical issues. Does anyone have experience with bowel incontinence? There has been one episode. I don't know what to do. I don't see much about that online.

toolbeltexpert

Falcon60 I think alot of us wish that things would change and usually when they do its worse. I can't speak for anyone else but I know sometimes I say things I can't believe I am saying. Sometimes shouting which has never helped. Its hard but, sometimes I just clam up.  Falcon Vent away your words don't fall on deaf ears that don't understand.

M1

Thinking of you Falcon.  Hope you can find something that works soon.  With you in spirit.

Jo C.

Falcon, I am so sorry.  Do you know with certainty just what internal roadblock is keeping your wife from being seen?   Do you belong to an HMO or are you on regular Medicare or other insurance?

If not an HMO and waiting for an authorization to be seen, if a primary care physician personally contacts the specialist physician and explains the severity of the patient's condition as urgent/emergent, and over the top, the patient is usually accommodated and seen.

It does no good whatsoever for the primary care MDs staff to call, it would have to be physician to physician. 

If your wife ends up in the hospital again for any reason whatsoever, make it clear that she will NOT be returning home; it is no longer safe for her and with your own medical condition you cannot safely provide home care any longer.  Period.  The word is unsafe, and refuse.

AND . . . If your wife is in the hospital for any reason, be certain that you insist the MD following her orders the dementia specialist in on consult BEFORE discharge.

Let us know how it is going, so hope you get some much needed assistance soon.

J.

JoseyWales

Falcon - I completely understand your feelings. I was where you were just a few months ago. Months to get into a psychiatrist. I'd take him to the hospital for behaviors, they wouldn't admit him. His regular doctor wouldn't prescribe meds anymore, because he couldn't find what would work. And I had a few nursing homes refuse him.

If you can get her hospitalized, don't take her home. Then the hospital will have to help find placement. Until then, know you're not alone.

60 falcon

QBC, you said "Our elderly care system here is broken.". I agree, and with the health system that we go, to the behavioral health department is beyond broken when it comes to dementia.  So many of us have or had problems getting the help we need.  So sad.

Rescue mom, yeah, the MC actually said she's too needy, needs too much one on one time.  I feel they were cherry picking, but I hate to admit it, but I agree with them.  The thing is, this particular AL/MC is brand new, has a separate MC wing, they claim their specialty is MC, and they only had two of 16 beds filled at the time. And, those two residents are much higher functioning and would require a lot less from the aides.  I figured wrongly, I guess, that they would've had "extra" time to give to my wife for at least a little while in hopes that my wife would adjust.  Where I live, there are few options for LTC.  I did my due diligence and narrowed it down to this place and a SNF with a MC unit.  The others have issues I just couldn't accept.

Jo C., No I don't know with certainty what the problem is.  My wife's PCP said she was making referrals for the psychiatrist but they kept getting routed to neuropsych for memory testing (of course that isn't needed).  The PCP did tell me that she personally spoke with the psychiatrist's office almost two weeks ago and they said they'd call to schedule for my wife.  I don't know if the PCP personally talked to the doc or some other staff.  Still waiting.  My wife has Medicare and pretty good coverage with BCBS - don't know if a prior auth is needed for Medicare but I know it's not needed with her private insurance.  My wife hasn't been to the ER or hospital in a very long time, but I've thought about what you suggested. I even considered taking her to the ER to be admitted to a geriatric psych hospital, similar to what M1 did.  But, near as I can figure out, the closest one of those is like four+ hours away.  After M1's experience, that flat out scares me.  

Safta, I would agree that home is best for her IF I wasn't burnt out and short on patience.  At this point, I feel like I'm becoming a trigger for some of her behaviors.  

Toolbelt, yeah,I agree that shouting never helps the situation. I also just clam up sometimes.  That doesn't help much either but at least I'm not saying things I'll regret.  I'm beginning to just walk out of the house for a while, but I worry she'll fall while I'm out there.

Ed, you're an inspiration to a lot of us.  Coming to terms with and accepting that LTC is needed is so hard.  I'm glad you have family support.  As a 57 yr old man, I surprised myself by breaking down and crying many times while coming to terms with that myself.

M1, you and your wife have been through so much these last several weeks. I haven't yet experienced what you're going through, but I'm hopeful that things will settle down for both of you.

60 falcon

Joseywales, did you end up taking your husband to the hospital and did the hospital help you find a place for your husband?  I'm sorry, at the moment I don't recall, but it sounds like a real nightmare that you two went through. Thanks for the support.

Buggsroo

Falcon I have to say that I get what you are saying. I find I hide down the basement because I need some space from the constant pacing, the constant demands for food, the endless clean up duty, fielding the f@#k yous when he doesn’t get what he wants. The only chats we have is me showering him, preparing food and cleaning his bum because he doesn’t make it to the toilet in time. 

When I go to bed in my own room, I feel incredible relief, being alone is great. The man I loved is long gone, I am a caregiver, that is all, it takes getting used to, my part time job is a god send but stressful because I have a 180 lb toddler in the living room.

So, I read your honest post with gratitude and sadness because I really know how you feel. I hope you can sort your situation soon, but please know that all of us know what you are going through.

Jo C.

Hello again; there is no need for any prior authorization with Medicare and BCBS supplement.  It seems the primary care MD called the psych office and asked for an appointment for your wife; but what seems to be the road block is that the Primary Care MD did not speak personally to the Geriatric Psychiatrist - that would be key to getting your wife seen as early as possible.  It will have to be doctor to doctor with yours advocating for you with urgent need based on symtoms and safety issues.

It may be helpful to ask your primary MD to give you a call, (not just a staff member), and ask the Primary to make a personal contact with the Psychiatrist, not just office staff.  If you have to sound a bit dramatic about the existing condition and behaviors, then that is what may get the ball rolling.

If there was a GeriPsych Unit in a medical center near you, that would be an option for immediate assessment and care as well as transferring your wife to a care facility upon discharge, but that sounds as though it is not something easy to do with such care being four hours away.

Confession:  Once when I could not gain an appointment for a LO with a Neurologist who specialized in dementia, I did not get the primary doc involved, but I did call the Neuro office each and every day and asked if there was a cancellation during the next week or two. I made best friends with the appointment person and guess that they got tired of me calling and was able to gain an appt. for the following week..  Another time, for another person,  I also called and asked to speak to the licensed nurse at the office.   I explained the severity of the symptoms and behaviors - she did the advocacy and got us a far earlier appointment.  In each case there was a gravely compromised patient that was delusional and acting out 24/7.

We do what we must because if we do not, who else will . . .

J.

abc123

Falcon, I am deeply sorry for you and for what has happened in your life and to your life. You are in my prayers and my thoughts every day. Please don't give up on yourself. 

We are here for you and we care. 

Jeff86

Falcon, thank you for sharing where you are in this terrible AD journey.  I was very moved by your cri de coeur.  What a tough situation you are in, having made the heart-breaking decision for placement but having your DW not accepted at your facility of choice.  I’m wondering if you can marshall some local resources to get some help—-local Alz Assn chapter, county Department of Aging, private care manager—for more options. 

I hope you get some relief soon.

Bob in LW

The MC didn't want her because she is too needy?  That's like a janitor complaining that the place is too dirty!