Updated: Oct 20
I wrote the following on a writing retreat at the coast in 2021, not long after I'd returned from Northern Ireland. It's so painful and personal I never thought I'd share it, but I felt so much better after yesterdays' blog that I thought, why not? I feel that until I get this off my chest, my writing will never start up again. So, I'm pouring out my heart to you, in the hopes that it'll help vanquish some of those ghosts of regret. I apologize in advance for how long it is!
-- Prior to 2017 I’d visited Dad in Northern Ireland regularly, sometimes for months at a time, taking over housekeeping for him to give him a break. Obviously, I loved my Dad, had hero-worshipped him as a child. But every human alive is flawed. I know I am. And Dad’s major flaw was his intolerance for anything that wasn’t done his way, his behavior ... (yes, American spelling; I’m touchy about it since some person in England gave A Celtic Yearbook a bad review for ‘poor’ spelling, i.e. American) ... made him pretty high on the narcissistic personality disorder spectrum. I think I probably was too in my early years, just because Dad was my dominant parental influence until I left home to go to college.
Irritating as Dad’s attitude was throughout the ensuing years, I forgave him his self-centeredness, and enjoyed blogging about his eccentricities, which could be endearing. At heart he was a decent, honest, intelligent man, with a wry and clever sense of humor.
When it became obvious in 2017 that Dad was going to need some assistance, I sought out a local Oregon therapist who dealt exclusively with people who had narcissists in their lives, and learned how to create boundaries and keep sane around said narcissist. Armed with these tools, I made sure to rent an apartment about ten minutes away from Dad’s, and not move in with him. That way I could walk away when he became unreasonable. And it worked. If he started up anything, I’d just say, “Okay, well, I should get going.” I’d kiss him on the cheek, adding, “Hope tomorrow is a better day,” or something along those lines.
I tried to write in the early mornings, and then head over to Dad’s around 11AM to join him on a walk with his dog, Cooper. Then I’d make lunch, and usually stay to do household chores in the afternoon. I’d often accompany him on a second evening walk, and then prepare dinner for us both. I’d watch a bit of television with him after I’d cleaned up the kitchen, and then head back to my flat. I’d adopted two cats … for two reasons. I was lonely, and because Cooper tried to kill any cat he saw, it meant I’d never be tempted to move into Dad’s house in the future. The first thing Cooper did when Dad brought him back from the dog pound, was kill an innocent kitten that had wandered into Dad’s back garden. I’m so glad I was in America at the time. Even so, it took me a very long time to warm up to Cooper.
This life was alien to me. In the States, writing was my priority, and I had the luxury of making it so. The more I helped out in Dad’s life, the more it took precedence, and my writing gradually dried up completely. Never having had children, I was unaccustomed to the daily toil of caring for someone else. Renewed respect blossomed for my mother. How did she manage to live the life of an indentured slave, and remain happy and graceful about it? And she had three children to toil for in addition. And that was before washing machines and dishwashers. I don’t know how she did it. (Oh, what a privileged life I’ve lived!)
I renewed old friendships, and my oldest childhood friend, June, welcomed me into her circle with open arms. I was content until around the summer of 2018, until I noticed that Dad was pretty much ignoring me most of the time, and finding fault in most of what I did or said. He had begun to talk to me like a serf, and both of us grew even more short-tempered. I remember wondering why I had come to help him; he didn’t appear to need or want my help. It occurred to me that a break would do me the world of good, and I scrambled through organizational hoops to get house-sitters for my cats, and who’d agree to also keep an eye on Dad. I arranged to return home to Oregon for five weeks, where I’d still order Dad’s groceries online from Tesco, coordinate his prescription refills with the Dundrum doctor and pharmacy, and order plenty of precooked meals from a local delivery service.
A week before I was to leave for my trip, Dad and I were walking with Cooper over on Murlough, a wildlife reserve by the coast, just across from where Dad lived. It was a brisk, but warm day, and I was impressed to see my 93 year-old father climb a stile without help. I felt reservations about leaving him for an extended time, and I asked him if he was going to be all right. He said, “Oh, yes, Cooper and I will muddle along together.”
It reassured me somewhat. After all, he had plenty of people going to check in with him every few days, and Ian said he’d check on him, too. When I got to Oregon, it was so good to see everyone again, and I’d timed it so I could spend Thanksgiving there. I shared with my friends how unhappy I had become with the way Dad treated me, and that I believed I’d gone too soon to look after him, that it appeared he didn’t really need the help at all, and I felt he resented me for being there.
When you’re immersed in a situation you can’t see it clearly. I didn’t see it, anyway. Dad had previously been an active internet user and we’d exchange frequent emails. But we didn’t during my visit. He’d apparently forgotten how to use it, or Skype. I wondered about it, but as I’d be back in a few weeks, I didn’t see it as a big problem. I’d installed a security camera in Dad’s hall, to monitor the front door. The added advantage was that I could check if he were all right, just by seeing the regularity of the door blind being open or shut, and the timing of interior lights going on or off. I could also hear Dad’s television, so I knew he was okay.
What I didn’t know, and of course, the sitters couldn’t know either, was that dementia had taken hold of Dad, and in the time that I left him on that sunny October day, to when I returned at the beginning of December, that the dementia seemed to take over completely. I said goodbye to a smiling father, standing on the golden leaves strewn by Autumn, and returned to a frightened, withdrawn, bedridden stranger. I will regret to my dying day that I left him. I blame myself completely. And even though it’s now 2021, and I now understand that the dementia had already begun long before I left him, as I was right in the middle of it, I just didn’t see it.
I hadn’t wanted to return to my caregiver duty. I wanted to pack the whole thing in, and just pay to have my cats sent to me via international pet courier. I was exhausted, mentally and physically, and I didn’t realize it until I went on that break. I spent most of it sleeping, I think.
So, in December, after a couple of days of adjustment, I went over to Dad’s around 11AM in time to join Dad for our usual walk with Cooper. But the blinds and curtains were all drawn. Cooper met me at the back door, tail wagging. I peeked into Dad’s bedroom, and he was fast asleep. Only slightly concerned, I let him be and took Cooper over to Murlough myself. When we got back I woke Dad up. I thought he was joking when he didn’t seem to know I’d been away at all.
He deteriorated very quickly after that. I wish I’d realized about the dementia. What I thought had been resentment and the silent treatment was him withdrawing into himself. The change was gradual, and I had just adjusted until I found myself exhausted and in need of that break. Now, it became a hellish existence for both of us. He was frightened and it manifested in rage. He wanted to sleep all the time, and when he got up, he didn’t know what day or time it was. At three in the afternoon, I’d be doing some chore around the house, and he would get up and demand why I was there in the middle of the night, and to get the hell home away from him. I didn’t understand about dementia and tried to reason with him. He’d get furious; I’d get hurt and annoyed.
His GP made many house calls, at Dad’s insistence. I thought Dr. Greer was a pompous ass at the time, but in hindsight I understand that he was just doing his job, and doing it very well. To him, it was obvious what was going on, he’d seen it many times before with other patients and their families. He wanted us to put Dad in a home. I had promised Dad I would never do that, and I did everything I could to make sure he stayed safely in his own house. With Dr Greer’s cooperation, we arranged to have a caregiver come out three times a day to check on Dad. Dad fluctuated widely between ‘I’m all right, what’s this fuss about?’ and ‘I’m dying, I can’t live like this, I need to go to hospital’.
I wasn’t coping at all, and privately hired two more caregivers, one of whom stayed overnight a few times a week. It never seemed to end. My days and nights seemed to be spent just trying to get through it all. My only respite was late at night when I got back to my flat and got to cuddle with the two cats. Once I got Dad settled and in his bed, I thought he stayed there the whole night. I had moved the security camera so it aimed down the main corridor. It didn’t invade Dad’s privacy, but if he came out of his room for any reason, I’d see. I had my phone tuned into the camera, and sitting by my bed in my apartment. Not once did I see him get up, so I felt it was safe to go home, and return in the morning to get Dad up. But once the caregiver stayed over she told me Dad was very restless and was up and down all night. I guess I must have slept through it all, even though the volume was turned up on the camera and on my phone.
Fiona, my niece was studying to be a nurse, and she was wonderful, coming out to help me when she could. But even with all this help, I was not coping. I have an autoimmune disease that doesn’t do well with stress. I was becoming more frail, tense, and ill myself, but was so immersed in it all, I didn’t realize it. You just adapt and try to carry on. The district nurse called late at Dad’s one night to check on him. I was in Dad’s living room, on my laptop. An expression of kind concern crossed her face when she came into the room. I looked and saw it through her eyes. Loads of scrunched up used tissues lay about the chair I’d been sitting in, my eyes red and swollen from crying. She realized I was in no condition to continue like this.
Dad was in despair the next morning – he was in pain, he had a horrible rash over most of his body, and he demanded I call Dr. Greer, who came a couple of hours later. The district nurse joined him, and Dad agreed wholeheartedly to go to a private nursing facility for two weeks, to treat a dreadful itchy and bleeding systemic rash over his entire back, and to give me a break. The district nurse went far and above the call of duty, and stayed to make phone calls with me. Between the two of us, we found a bed in a facility about ten miles away. An ambulance would transport him, but because it was Monday, apparently none were available unless it was an emergency.
Fiona arrived, and we got Dad settled in the passenger seat of his car, she got in the back, and I began to drive us to the facility. (I’ve blanked on the name of the town.) Unfortunately, it took about half an hour to get there, and about ten minutes into the drive Dad demanded to know where we were going. He’d completely forgotten about asking for help, and agreeing to it. I tried to remind him, and he forcibly told me he didn’t agree to it and wouldn’t go. I just told him he needed it, and it was only for a fortnight.
We arrived at the home and the staff came out to help bring Dad inside. But he’d have none of it. He refused to get out of the car. I tried to remonstrate, but he was furious and almost punched me. The staff said they couldn’t force him, so I called Dr. Greer in tears for advice. He told me to call the fucking police! To force Dad into the facility! That was ridiculous and I wouldn’t do it. I returned to the car to find that Dad had lifted my set of keys from the cup holder in the car, and was in the driving seat, trying to start the car. I had the car keys with me; the keys he had were for my car and his house. I felt like the worst human being on the planet. My father thought that I was trying to toss him out and throw him into a nursing home. He was so distraught he was trying to escape. My poor niece didn’t know what to do or say. With my heart saddened beyond anything I’ve ever felt before, I assured Dad we were going home, and helped him with his walker back round to the passenger seat. We weren’t five minutes on our way before Dad had forgotten it all and announced he’d never been on that road before. Pretending nothing had happened, I agreed and said how pretty it was along the coast.
At home, Fiona and I got some food together, and we all ate in the living room with the BBC news on the television. I sat in the corner, feeling absolutely awful. I was glad Dad didn’t remember, but I did. And I felt totally wretched. If he’d only gone in for those two weeks, we all might have had a chance. But his rash continued, his pain remained, and his distress increased. I think I became numb after that. I just tried to get through each day and night.
There are so many things that remain clear and awful in my head, and no amount of time seems to make it go away. Like that evening, Dad looked at Cooper and demanded angrily of me where the other dog was. Still not understanding that it’s better to adapt to the person with dementia’s world than try and tell them something else, I explained that he used to have two dogs, but they died years ago, and he’d had Cooper since 2014. Or when June drove out to see me one afternoon, and waited while I gave Dad some lunch. He went to his room afterward and June and I sat down to a pot of tea. One of the caregivers came in for her allotted visit, and when she asked Dad if he’d like something to eat, he glared at me and snarled that he was starving, no one had taken any care of him, and it was like he had no family.
There doesn’t seem to be anything I can do to get past this. I let him down, in the end. I tried my best, but it wasn’t good enough. I wish I’d known more about dementia before going to care for him. I would not have taken everything so personally. If I’d been educated in the condition, I could have been prepared and made his last months less dreadful for him.
His home had become intolerable for him, despite him not wanting to leave. Everything he looked at reminded him that something terrible was wrong. Always a devoted gardener, weeds were taking over, and moss laced all the patio paving stones in bright green. He was a perfectionist about keeping the house in order and clean, and no matter how I tried, I couldn’t match his expectations. I couldn’t do anything to relieve his misery.
Because his short term memory was so bad, he asked every few minutes where Cooper was. Every time he’d sit down in his usual chair, he’d look out the window and complain how high the hedge had grown. Or walk through the hall and complain that the mechanical clock on the wall was broken. I hired people to do these jobs, and Ian came if I asked him to do things in the garden or house.
One of those times, Ian was treating the moss, and Dad hobbled out on his walker to demand what he was doing. Apparently when Ian explained, Dad said he should be doing something useful like preparing food for him as he was starving and no one was taking care of him. I don’t know what Ian said, but Dad lifted his walker high in the air and tried to hit Ian with it. I had left to feed the cats, knowing Ian was there. I’d only been in my apartment for a few minutes when my cell phone rang. I was on speed dial on Dad’s home phone, so he called me immediately after Ian had left to ask me to come and that they’d had a row.
I’m not sure how long he maintained that memory, but he seemed to still know something was wrong when I arrived a few minutes later. The phone was ringing, and cut off just as I went to answer it. I could see it was Ian from the caller ID. Dad demanded I call him right back, and flustered and tired, I said I’d do it in a minute. I just wanted to set my keys down and take a moment. Dad lost his temper and tried to hit me with the walker. I blocked it and he went to elbow me in the face. I also blocked that and stared him down. A few seconds later he apologized, saying he ‘was out of his mind’. I replied that I knew that he was upset and I was sorry. I hugged him. He seemed so frail and small. We talked and all seemed well. I phoned Ian and heard what had happened. After that poor Ian only came back when I asked, which was very kind of him. But who could blame him? Ian didn’t understand dementia any more than I did.
One late afternoon, I came to see that no matter my promise, Dad was living in sheer hell, and the care that I and the caregivers tried to provide, was not enough to keep him safe. I think it was late May in 2019, we’d had the usual stressful day. Then he was doubled up in pain because he was constipated. I put on blue latex medical gloves, got a suppository, and told Dad to lean on his walker and balance one leg on a rung of the walker. I administered the suppository in his rectum and tried not to laugh when he cried out in surprise. Talk about gallows humor. There was nothing funny about it, but in my place I know Dad would have laughed too. I told him to hang onto it as long as he could, and he went into the bathroom. It worked, but it didn’t all make it into the toilet. I got him clean pajamas, put fresh sheets on his bed, and got him all cleaned up and ready for bed. Fortunately, before he got in I noticed he had thick fecal matter all over the soles of his feet. I cleaned that up and tucked him in. He gave me a grateful smile and rolled over to go to sleep. That smile was the best reward I could get. I felt like I’d actually helped him for a change. I watched him sleep for a little while, then left to clean up the bathroom.
I wished with all my heart his misery could end. He’d told me years ago that he’d rather kill himself than live like the way he was now. He’d said recently that he would take all his painkillers if he thought it would end his life. I remember explaining that a Paracetamol overdose would not kill him easily or outright, and that he’d die a very painful, slow death. He laughed at the time.
This was the moment I realized he had to go into a nursing home. He had always said that a person dies after three months once in a home. If that were so in his case, at least he’d be safe and cared for, and the misery would be only a three-month duration. He had fallen so many times, and I’d only been able to pick him up off the floor once, and get him back into bed. I nearly put my back out, as he still weighed upward of 140 lbs. So, I had to call an ambulance all the other times. Dr. Greer told me the next time it happened to insist the paramedics took him to hospital. But Dad was very good at ‘there’s nothing wrong with me’ as soon as he was seen by the attending physician.
I talked about this with Carol, one of the private caregivers I’d hired. She was amazing, and so great with Dad. She chatted away with him, and really looked after him the way I wanted to but he wouldn’t let me. We agreed that the next time something happened, if she was there and I was not, she would call an ambulance.
One afternoon shortly after the suppository incident, Dad demanded that Carol call an ambulance as he was suffering so much. She did so, even though as soon as they arrived, he made her send them away! But it happened again, and this time the paramedics insisted he go with them. She drove to the hospital behind the ambulance, and stayed with him in the emergency room until he was admitted. He had deteriorated so much that there was no question he needed medical intervention. I stayed away that day, because the hospital was always so overcrowded, that if a family member was available, Dad would be discharged again, and his hell would continue. Dr. Greer pretty much said this, but in a professional, doctor’s manner.
The timing is a bit confused for me, by now. I was living in hell too, and the days all mashed together. In the UK, social workers automatically get involved when someone in Dad’s condition is admitted to hospital. It doesn’t mean what it does in the States. It’s normal and expected. A social worker in the States can mean there’s abuse or neglect, or something equally horrible, but not the case in the UK, it’s just procedure.
The social worker wholeheartedly agreed that Dad could never thrive if he stayed in his house, so she told me to take a break, go home to the States for a visit, and just not be available, for if I was, when they were ready, the hospital would discharge him into my care, as they were so understaffed. She said they’d admit him into a nursing facility if I wasn’t there. I didn’t go to the States, I stayed and in the background, found the best and most expensive nursing home in the area, and secured a bed for Dad by paying cash per night, even while he was in hospital. It was sheer luck that a bed opened up for him in the home, and I wanted to make sure he went there and nowhere else. It was like a private hotel, with beautiful grounds, and exceptionally clean and comfortable. When or if my time comes, it’s somewhere I’d be happy to stay in.
The social worker told me to stay away for several weeks so that Dad could adjust. I hired Carol to go in every single day for an hour, to make sure Dad was being cared for properly. In the meantime, the social worker visited me and bestowed a generous caregiver grant from the government, supposedly to be used to give me a respite. With the amount of guilt I felt constantly, I don’t think I ever spent it on anything.
I had most of the summer alone. It’s a bit of a fog. I talked to Carol every day and I socialized, but I don’t really remember any of it. A couple of times he had to be rushed to the main hospital in Belfast, and one of those times he was delirious with a high fever. The paramedic thought that I’d have a calming influence on Dad and requested I ride in the back of the ambulance. If anything, my presence made it worse. Dad physically fought the whole journey to the hospital, and the paramedic couldn’t give him an IV or anything to calm him. At that hospital there was an approximately thirty-six hour wait before a person could get into a bed or ward. They were put in the corridor on gurneys, all along the walls. The first time Dad had gone there, I couldn’t believe it. It was like a third-world country. But his time he was straight into the ward and being cared for.
The day came that I could visit Dad at the nursing home. I couldn’t wait, yet at the same time dreaded it. There’s no description for how guilty I felt about having him go into there in the first place. And to not visit him before this. I felt like the most selfish person in the world. Carol met me in the parking lot, and waited in the corridor when I went into Dad’s room. He was in bed, asleep, but woke up when I approached. He looked better than when I’d last seen him. His face lacked the awful pallor, and he didn’t seem just as diminished, but frail, all the same. I joyously said hello, and he replied. “Oh. Where’s Cooper?” Apparently he rarely asked about Cooper, so I guess my presence just reminded him.
None of the visits went very well after that. What with me crippled with guilt, and Dad’s dementia worsening, our conversations were limited. Most every time, he’d be in his bed and turn his back to me, saying, “Today’s not a good day,” or something similar.
There’s a lot in between all of this. Such as hospital stays, and he apparently fractured his hip while getting out of bed. He had awful bruises over his body where he had fallen, even in the nursing home. The manageress told me that Dad was the most difficult patient they’d ever had. He violently retaliated against being there. I learned he kept threatening to call the police because he was being held against his will, and one time he threw things at Dr. Greer when he was visiting. Dad was as miserable there as he had been at home.
The worst I felt was on his 94th birthday when I visited him. But I didn’t mention it because I’d been advised celebrations tend to upset dementia patients. But the date was handwritten on a sign in the main sitting room of the home. So, Dad read it and asked me was this his birthday. I said yes, and pulled out a birthday card I’d brought just in case. I had no present, and because I hadn’t brought it up, I could see he felt very hurt. I told him we’d celebrate when he came home. Every word cut into me, because I knew I was lying. And I suspect he knew too. Because his short term memory was even worse, I slipped away without saying goodbye when he needed to be taken to the toilet.
The next time I visited, the manageress told me that Dad had gone to another patient’s room in the middle of the night, and was found holding a pillow over the patient’s face. The patient also had dementia, and screamed a lot, which would upset anyone. Fortunately Dad was discovered before any harm was done. But the home no longer wanted to keep him. Because I ‘officially’ was in the States when Dad first went to the home, he sort of fell through the cracks, and a social worker who didn’t know me or his original social worker, made him a ward of the state and sent him to the dementia ward in the local hospital.
As soon as I found out I made outraged phone calls and met with the psychiatrist at the hospital, and his ‘mental detainee’ status was revoked. But at this point he couldn’t be anywhere else but in that ward, where he received even better care than at the home.
I know he blamed me for everything. He called me ‘scum’ in front of the psychiatrist. He’d turn his back when he realized I was there. I don’t blame him. It broke my heart and my soul, but this was the way it had to be.
Until I found a newly opened private in-home caregiver company. It seemed to take forever, but a suitable carer was eventually found, and arrangements were made for Dad’s return home. I was to be the carer’s relief, and Carol, of course.. I wasn’t sure how I was going to cope, but it was the right thing, I thought. I kept telling Dad he would be home very soon, but he didn’t seem to remember where home was.
The carer was flying in from Spain, and would be in the house about a week before the red tape was completed about getting a hospital bed, and all the paraphernalia concerned in caring for an elderly patient. But then we got a call that Dad had inhaled some food particles and was suffering from pneumonia. We all know what that means in an elderly person.
We dropped everything and went over there, and were in time to drive behind the ambulance to the main Belfast hospital. Dad was put in a bed in a tiny cubicle in emergency, which was absolutely filled and was very noisy. I sat by his bedside as he drifted in and out of sleep. At one point Dad woke up, looked at us and asked, “Has somebody died?” We laughed, and I was certain he’d be all right. Humor even then. He was an extremely strong man.
Then Dad woke up again and spoke directly to me. He said, “Go home. Just go.”
Those were the last words he spoke to me. The next day, an ambulance brought him home on a gurney. The carer and I took charge of my unconscious father and tended to him throughout the night. I think I was in denial, for I was certain Dad would wake up in the morning, see the sun on the trees outside his bedroom window, and somehow recover. I expected him to live. I really did.
The next day, Carol came over to sit with Dad while the carer took a break, and I went home to get some sleep. The next thing I knew, that Neil was gently shaking me awake to tell me that Dad had passed away. Carol was with him at the end. She says he just stopped breathing, and it took her a moment to realize. I’ll always be forever grateful for Carol.
I don’t know if Dad was ever aware he had come home. I’d like to think so.
Even now, in September 2021, my grief and guilt are as acute as ever. Writing this is most likely a first step in recovery. But it’s been a pretty awful past few years. It’s very hard to move on, with this level of guilt.
At least Dad isn’t suffering anymore. --
(And back to 2023. I am coping with the guilt a bit better, and am obviously in a better place mentally as I'm ready to share this. Thank you for reading.)
Dad and Cooper having a snack and watching rugby!