Caregiver Burnout Warning
My husband is a 100% service connected disabled veteran with dementia – various doctors have advanced possible diagnosis ranging from Parkinson's/dementia, ALZ, to "He's certainly got SOMETHING."
A doctor with the V.A. recently told me we should file a claim related to Agent Orange. What? He's already rated 100% for PTSD. Back in the '80's the V.A. did send him tubes of an ineffective cream for Agent Orange problems on his feet which were deemed to have been caused by working on an airstrip in Vietnam for 13 months.
No meaningful testing to pinpoint the nature of the trouble has ever been ordered – either by V.A. or the 'outside' (non V.A.) doctors I first sought help from back in 1997 for what later proved to be early signs of "SOMETHING"
However that may be his cognitive difficulties were pretty severe by 2015, he hasn't known how to so much as get a glass of water in over a year. Mobility problems have greatly intensified in the last year. Still ambulatory if careful, but subject to 'locking up' and falling over if tired. One leg drags a little and often trips him up. Not able to manage a walker.
About this time last year he started kicking and pummeling me in his sleep. He didn't wake up or remember these episodes. Quit sleeping with him for a while, after about two months this phenomenon ceased and I was able to return to the marital bed.
I started assisting him at the toilet about 9 months ago. He was still seeking the toilet then but was prone to sitting down next to the toilet – FALL RISK – and always made a mess of the paperwork following b.m. He hadn't washed his hands on his own in a while.
He wanted my eyes on him at all times, demanding attention every three to seven minutes (I timed it with the chess clock) interruptions averaged thirty seconds if I tried to read a book. 14 to 18 hours a day. Katy bar the door if I didn't go to bed when he did.
In August hubby began experiencing mostly night time episodes of hostility and aggression, verbal and physical. Frequency and intensity increased over time and daytime bouts were often followed by non-stop pacing for up to an hour. Diversions and other tactics recommended in caregiver training videos worked infrequently…less and less as things rolled along. Most effective way to break his train of thought was to get out of his sight, often he would return to bed and go to sleep. While I sat banished to the living room musing about beds and peaceful sleep.
No support network to speak of. Family and friends disabled themselves or died off or melted away over the last three years.
V.A. doctors and social workers have told me Fear Not – Help Is On the Way at least 7 times in the last four months. Some promised home aides + occasional respite care, expect a call from them soon, some promised palliative care, expect a call from them soon. What's palliative care? They'll explain it when they call you…soon. Didn't happen.
When I described my difficulties and asked his dr. about medications to mitigate the aggression he replied that this was neurologist's job…4 hour drive, 90 days for appointment.
A digestive problem hubby had developed led to a month of very loose stools every 3 or 4 hours around the clock. I called dr.'s office with concerns about effects of constant diahhrea and sleepless nights forever – shouldn't the prescribed medication be changed or adjusted? The Care Team nurse said she'd put in a consult for the G.I. doc. at Regional, expect a call from her soon. Didn't happen. Very same G.I. doc who had told me previously to expect a call from palliative care soon. Didn't happen. (4th one to say Help Is On The Way) I stopped the stomach medicine on my own and the squirts ceased. Hubby's tummy doing ok now but too late.
Between the sleepless nights and constant squirts hubby not feeling well and mean as a snake. I'm not at my best either. Chasing me away from the toilet most of the time. I had installed safeties to prevent his falling next to the toilet but now he sometimes forgot to lower his drawers, or open toilet lid if I had forgotten to. The post-rage pacing now included the bonus of lavish distribution of feces every few days. When this happened hubby would consent to a bath, otherwise he often declined. Remember the aforementioned paperwork problem? Dirty drawers and hands, infrequent bathing.
The other day I had just finished cleaning most of a mess up and giving him a bath which he said he enjoyed very much. All going well until he threw another toilet fit, following me around yelling and forbade me to change the bedsheets. I lost it and started yelling back at him for the first time. When I came up for air and looked at him his whole body was shuddering, he was white as a sheet, eyes as big as silver dollars. I will never live that down.
It was past time to get off the boat. I went outside for phone reception…call the V.A….find out where can I take him? Hubby came out screaming at me. I sat in the truck on hold for 16 minutes 32 seconds while hubby floundered around the truck hammering on the windows and yelling at me to get out of his life. The phone dropped reception. So much for that. After a while he wound down, and I invited him to go for a ride. About the only activity he enjoys anymore. For the first time in well over a year he did not ask 'where are we going' every 5 minutes – didn't ask once on the 2+hour trip to Regional. Every few minutes he stroked my arm and said 'you hate me don't you?' I tried to reassure him..No I don't, I'm just tired. Between stroking my arm and asking the question he pressed his head against me. This went on for the whole trip – how's that for continuity of thought process? When we arrived he recognized the place. The look of pain and betrayal on his face was awful. Softly "You planned this didn't you?" but he went in with me and stood by while I asked the E.R. receptionist how to go about placing him in care. She condescendingly explained that this is not the place or way. E.R. would NOT take him. I must go through his Primary Care dr. and he would take care of it. I said that dr. hadn't taken care of much so far, if I should run away leaving hubby in the waiting room would they throw him out in the street? She said no, but CPP would be called in and I would very likely face criminal abandonment charges. I replied that if he won't use the toilet and won't take a bath does that not constitute neglect? Also subject to criminal charges?
All this in polite tones as if we were simply discussing a civilized subject.
I said "Dr. and others have been telling me Help Is On The Way for months but nothing has happened." She checked her screen and no doubt saw our recent dr. visit, and said 'there is no call in for services.' Now her eyes dropped and she looked flustered. 'Does he have a medical problem for which the E.R. dr. could admit him to hospital? She's sure that dr. could find a way.
No, no health problem that I know of that could be construed as an emergency.
A social worker is on call. Maybe she can do something. Hubby and I are escorted to exam room in back where we sit for an hour or so. The social worker arrives, probably having been told nothing more than that I had rolled in threatening to abandon my husband of thirty-something years. She promotes the Primary Care Doctor theory to me, I explain that several people including dr have been telling me for months that Help Is On The Way.
Now she's frowning at me. 'Who told you that?' I tell her. And about the person here at Regional who, back in Nov., pulled strings to get us in to Primary Care a month or more earlier than appointment in order to get the Help Is On The Way wagon rolling faster. The receptionist has checked, there never was a call in for the Help Wagon, they ain't going to do nothing.
She needs grounds for 'unsafe conditions' before she can do anything. Am I likely to hurt him? No, he's aggressive one, I'm afraid he'll fall while chasing me. Hygiene problems. Potential for illness.
She decides to sign an 'Order To Detain" whatever that is. Have dr. give hubby something soothing as he's getting restless wanting to go home. There's an outside geriatric psych ward specializing in finding proper meds for aggressive behaviours in dementia patients. Average stay 3 – 5 days, sometimes as long as 10. Meanwhile she herself will put in a call for services to get ready for hubby's homecoming. Home aides, respite period every two weeks. Expect the call soon, Monday at the latest. She goes away, not having offered me her card or copies of the relevant paperwork. No Help Wagon call came…chalk up another Didn't Happen.
When Nurse brought in the soothing shot she explained that some people were just relaxed by it, others might get a little sleepy. She rejoined the gaggle of nurses holding a gabfest at the nurses' station.
After a while hubby decided to move from the chair to the bed. About 18 inches. Rising with more difficulty than usual he turned to the bed and froze. He sank towards the floor but I got a knee under his butt and prevented a fall. I couldn't shift him. Totally limp with my knee pinning him against the bed. I yelled 'HEY' at the nurses whooping it up at the station 20 feet away. One of them looked at me but didn't move. Again 'HEY' now a couple of them looked and saw the position I was in. Did I need help? 'YES'
Four or five of them came and slid hubby onto the bed, which was raised to an almost sitting position. None of them spoke. They went away. Hubby was propped crookedly against the backrest, his head lolling to one side. He could move his eyes but that was it. Tugging on his shoulders I straightened him on the bed so his neck wouldn't be so bent.
What the hell did they give him? He's a 73 year old man with an undiagnosed dementia…or SOMETHING.
After a while Nurse returns to check hubby's blood pressure, affix a heart monitor. She went away. Hubby's eyes turn towards me and he whispers "You planned this. You hate me."
No baby I don't. I raised the bed's safety rail and rushed out into the night. It was midnight. I cried all the way home.
The people at the psych unit seem reluctant to answer my questions when I call next day. On Sunday I made the 2 hour drive to visit. When they brought hubby into the room he was walking hunched over, head nearly level with waist. He was pale as a bedsheet, eyes the size of silver dollars. He backpedaled as far as the aide assisting him allowed and asked me "Are you going to hit me?" no.
The aide said he would fetch the nurse to answer my questions. Didn't happen. Hubby sat twisting and pulling at one of his fingers as one does when removing a tight ring. He was pulling and twisting hard, the finger bent to an alarming degree. 'I'm trying to get this off' he explained when I asked.
'Please stop. You might hurt your finger'
He changed to a different finger, twisting and pulling. 'Who are those two guys?' he asked while indicating an empty corner of the room. I said I didn't know them. These behaviours continued for a while. Suddenly he sat quiet, looked at me and said 'I like it here. At first I hated it but I'm getting used to it. Now I like it here. Really I hate it.' The look in his eyes was the most lucid I've seen in years. 'How's your boyfriend? he asked.
'No boyfriend, only you' I said softly (NEVER ARGUE WITH THEM!)
He didn't contest the point, just gave me a dirty look and turned away. An aide appeared in the doorway asking if everything was all right. I didn't take to her demeanor. She went away. Hubby said that he and this aide didn't like each other. I wondered if she was the one on the phone who had expressed resentment at having to clean up one of hubby's toileting mishaps.
There was a little more talk. Some coherent, some not. Am I to believe that someone in the facility named Bobby thumps on him? Is staff to believe that I thump on hubby? I found no marks upon him aside from an impressive blood bruise from a labs stick (blood draw) maybe gone awry.
Two staffers have told me over the phone that they'd had trouble obtaining lab samples. Another scoffed and said that she'd heard nothing about difficulties. I know that hubby has trouble holding still when handled and I don't hold the ugly bruise against them. Finally speak to one who's willing to discuss the case in more detail. So far as my extremely limited understanding of such matters permits I think the blood values she emphasizes are pertinent to the meds they are trying.
I made phone inquiries every day for a while even though the staffers seemed not to like it. A couple bordered on outright hostility. 6 were contacted average call time 6 minutes.
I'm not really interested in attitudes or what their opinion of me might be. I found out what I wanted to know. Information sharing between caregivers appears to be excellent. I've seen very unfortunate things happen to patients in hospital settings when staffers aren't all on the same page.
I won't go see hubby again unless dr. calls and says I should. I expect this to coincide with the freezing over of hell. It was obvious that hubby is scared of me and didn't want the visit. Surely they didn't MAKE him attend. Having spent years attempting to shield him from stressful situations I will not induce anxiety in him now.
I don't know if I'll ever see him again. I knew that institution time was nigh but never imagined it come about like this. I think he could have enjoyed a better quality of life for a little longer if the system charged with his well-being had performed better.
Was it typical V.A. dysfunction…or was it (as some of my acquaintances maintain) deliberately done to save government money?
I'm confused and feel I've been duped by the system, face a penurious old age or worse, and feel an overwhelming grief and guilt for falling down at the eleventh hour.