Sobbing....

riajean

Hello everyone,

Visited my dear husband today, when I walked in the aide was chastising my DH for supposedly grabbing his Ensure from her.  He doesn't know what he's doing.  She also refused to feed him (his lunch was practically untouched) saying "he ate a good breakfast".  I asked her twice, but she took his lunch away and left.  I tried to let it go. (Later at home, I called and left a message with the nurse in charge about this "aide".)

Then, seeing me, knowing who I was, my DH started to cry; not just cry, but his lower lip trembled until he was crying out loud.  I tried to console him, saying "I'm here", and "I love you" and "It's OK", gently stroking his face, wiping his tears and more.  This went on for over an HOUR.  Finally, not seeing anyone around, I called Hospice and asked for help.  They sent a nurse over to tend to him when they too called the floor he is on and got no answer at the nurse's station.  (Not unusual, especially on a weekend.) 

He finally seemed to calm down, even smile at me, but then reverted to tears.  I waited over an hour for the nurse to arrive, but devastated and tired, knowing there was an hour and a half drive home, I kissed him goodbye and left.  The hospice nurse called me later to say she checked him and he was comfortable.  His BP was elevated (for him) but not so high to spark alarm. 

Have any of you experienced this incessant sobbing in late stages of ALZ?  Does it mean he knows me and is sad?  Does it mean he's in pain?  Twice he looked at "someone" and waved.  Is he at the end of his life?  Gut wrenching to experience this with the man I love with every part of my being.

Buggsroo

I can imagine how heart sick you must have felt seeing your husband cry like that. I imagine he felt overwhelmed and probably didn’t know how to deal with the emotions. I am surmising here and sincerely hoping that he was not devastated. It sounds like the aide doesn’t understand how to deal with patients with dementia. He definitely needs an aide who understands him and how to deal with his moods.

I am sorry you had to see this, it is devastating to see your loved one crying and distressed. I am glad your hubby felt better later. I can see in my husband he has retreated to childhood and reacts to situations as a child would. I hope his aide situation gets sorted. Sending you a virtual hug.

Dio

So sorry about your husband's distress. I hope the aide gets straightened out. Is your husband at an SNF? Gosh, I keep hearing all these horror stories about abuse and neglect at facilities. I just hope I'll be able to find a good facility for my DH. Sending hugs to you...

Joe C.

Sorry you are dealing with this. The actions of this aide a truly unacceptable! At a very bare minimum she should have left the lunch to see if you could get him to eat. I hope things improve going forward.

Ed1937

Visited my dear husband today, when I walked in the aide was chastising my DH for supposedly grabbing his Ensure from her.  He doesn't know what he's doing.  She also refused to feed him (his lunch was practically untouched) saying "he ate a good breakfast".  I asked her twice, but she took his lunch away and left.  I tried to let it go. (Later at home, I called and left a message with the nurse in charge about this "aide".)

Riajean, I'm so sorry. It sounds like this aide either doesn't know how to handle PWD, she doesn't care, or both. If you asked her twice to try to feed him, and she just took his lunch and left, that should not be tolerated in my opinion. He can't advocate for himself, so you have to do it for him. Please follow up with the charge nurse to see if anything has been done. 

As an advocate, I think we need to complain about the things that really matter, and learn to let go of the things that are simply a little annoying. If we complain too much, we get labeled as a "problem". If we never complain when it is warranted, things do not get better. I am really sorry you had to experience what you did.

riajean

Morning.  Yes, my DH is at an SNF.  Had to look that up   Long-term care they call it.  Aides like yesterday are common unfortunately.  They show up, do whatever and don't try too hard.  Plus, they don't understand dementia and think the poor, very sick person is responsible for their actions when that's not true.  My husband is a gentle man, wouldn't hurt anyone, but hardly sees anymore, understands nothing, says hardly anything, but wants to.  I get the "well, we're short handed...blah, blah, blah" a lot but when the facility expects $14,000 / month - yes, you read that correctly - I expect one hell of a lot more with NO excuses.

Frankly, I was more upset about his sobbing and that he couldn't be consoled. 

Beachfan

riajean,

I think you are located in New Jersey- -?  Wherever you live, such “care” is unacceptable, regardless of placement or (exorbitant) cost.   My DH is in a Memory Care Facility(MCF) in PA; it is designed to serve Alz/dementia residents exclusively.  It is a cottage setting; 16 residents at max and although caregivers are spread thin these days, there is always staff within eyesight and all are highly trained.  DH is 38 miles away, one hour each way, over mountains and interstate, but the care makes the distance worthwhile.  I pay 6200/month, all inclusive, private pay.  Might you consider researching another facility, for his well being and your peace of mind?  I understand it would be a hassle, but maybe worth it in the end.  DH’s facility is part of the Arden Courts chain, run by Promedica.  They have MCF’s across the country; maybe there is one within a reasonable distance.  You won’t lose anything by checking around.  My heart aches for you; I would be beyond devastated to find DH (or anyone in his cottage) suffering at the hands of “caregivers”.  Best of luck; neither he nor you deserves to be treated in this manner.  

riajean

Ed, I agree and that's why the goal is to be kind to everyone and assess what is most important and what might be something necessary to report.  I DID report this aide leaving a message with the floor nurse who gave me her direct line.  There was another incident with an aide and she asked me if I'd put it in writing, slipping a letter underneath her office door and I really, really didn't want to be a tattletale.  So, that wasn't done, but this one....well, I felt she should be reported, so I did.  Haven't heard anything back but, it's OK.

Beachfan, thank you but my husband is in long-term care, bedbound, full assist with EVERYTHING and cannot be in MC.  The facilities around me in western NY don't have the skills to care for someone in the end stages which he is in.  He does nothing all day but lie in bed or in his Broda chair.  That's it.  But, I do get upset with aides that appear to be non-caring and just getting through their day.  This is MY love, my husband, known him for 50 years and I care very deeply about how he's treated.

My problem was mostly that he was sobbing, out loud, not just shedding a few tears, but out and out sobbing for over an hour.  Was the first time he couldn't be consoled, every once in awhile waving to "someone" to his right.  I know he's not long for this world, and just pray he is treated with the most compassion possible.  I LOVE this man and want only what's best and will do anything/everything I can to ensure that happens.

I did think about moving him closer to me - which would be a blessing - and he was number 6 in a line of those awaiting hospice care only 3 miles - if that - from home.  I will call tomorrow and see if he's moved any closer.  I really want him closer to home now.  But I have to understand that may not be possible. 

This is so damned hard.  For all of us I pray for comfort and peace, on whatever level we can get it.

Cherjer

Riajean...could you possibly transfer him home? My DH is home and on hospice. I have wonderful care for him (three caregivers) plus Hospice. I have chosen to keep him home...he was put on some heavy medication from Hospice, and I rejected that,,, he is able to walk and cannot believe he responds to directions! This did not happen months ago. My caregivers are amazing..DH opens his eyes, and even tells me he loves me! I know that this cannot go on for long but I have no regrets keeping him home. I am lucky he sleeps all night so do not need a caregiver at night

riajean

Ohhhhh.....Cherjer, how I wish!  Can hardly bear that thought.  So much I wish he were here, I miss him so terribly, but just not possible.  We have a 100 year old home, stairs, no first floor bedrooms.  I couldn't bear to have him here without the care he needs and the care in this area is so limited.  Trying to get him into the Hospice house 3 miles from home, but he's on a waiting list and was number 6 when I called maybe 4 months ago.  Hospice is wonderful where he is and truly they care for him sweetly and with respect and more.  It's the general aides that have a hard time, poorly trained, you know the drill.

A few years ago I researched having a live-in caretaker but the cost was incredibly prohibitive and I'm using an Elder Care attorney to fight Medicaid's rejection of helping us, so any monies left are just flying out the door.  There's just no easy answer.  Hospice nurse called today to say they've witnessed him tear up which I've seen too, but he's easily distracted.  Sunday was unusual and it's probably due to his progression and trying hard to communicate with me and he can't.  Just a really bad, hard day. 

harshedbuzz

Beachfan wrote:

I pay 6200/month, all inclusive, private pay.  Might you consider researching another facility, for his well being and your peace of mind?  I understand it would be a hassle, but maybe worth it in the end.  DH’s facility is part of the Arden Courts chain, run by Promedica.  They have MCF’s across the country; maybe there is one within a reasonable distance.  

Beachfan-

My dad was also in an Arden Courts Memory Care facility. I'm also in PA but only 5 miles from NJ. Dad's monthly fee-- he died 5 years ago-- was $7200/month and pretty much middle-of-the-pack in terms of price of the 12 MCF I toured at that time. I suspect fees are very regional based on COL and competition for staff. There are a lot of facilities in my area; I drove past at least 10 LTC facilities on my drive to visit dad and they've built 2 more on the route since then.

HB

riajean

Thank you but there are no MCF's in my area that would accept my DH in his present condition. There is "no room at the inn", as I've both visited and called and called and applied and more.  He's also on a waiting list for the Hospice house, but first Medicaid has to approve me and they're fighting.  Paid $42K out of pocket last year alone for my poor DH and my savings are going down and business is slow, so I've cut my salary. They don't like that I purchased a house (low cost, but "too much" in their personal estimate, like they have control over my life?@# what?@#!) for my son who has complex PTSD from the Army who was living in a mold racked, flea infested, two-room hotel with nowhere to go.  Can't work.  The money I used was from my father, his Papi and Dad would have loved I helped my son.  Medicaid doesn't.  They think I owe my life which is pretty much toast at the moment, living on SS and whatever I can pull from a slow business.  Trying to make my way through life as an honest citizen, paying taxes, working like a dog, hurting like crazy with this horrendous loss and more.  F it all.

There is no easy fix.  I cannot move him, as drastic and complicated as it sounds like it could be as he'd need to be transported (more $$) and who knows how long his body can hold out, full on Cachexia, 6'-2", down to 134 lbs so far, may be less in another month when they weigh him; losing 50 lbs since September without trying.

I'm stuck with where he is and will continue to report the "abuse" and "neglect" of aides as happens.  The Hospice team is just lovely and I want to keep them.  They are mostly in charge and there are always no less than 3 calls/week from the nurse/social worker and pastor, so I KNOW he's in a good place but with inadequate help, as the day demands.

MaryG123

Thank goodness he’s in hospice!  Hugs to you Riajean (()).

Beachfan

Sorry, riajean.  I didn’t mean to make your situation worse by suggesting a facility move.  The Arden Courts MCF’s  are private pay anyway, so Medicaid would be of no help.  I hope you are able to sort things out all around and soon.  I’m sorry it’s so hard; sometimes I feel guilty because my issues are so minimal in comparison to other posters.  Then I look at the big picture and realize we’re all headed to the same end.  Good luck; stay strong- - but you are that.