caregiving3

CAREGIVING

MY STORY-PART 2

The First Two Years

At long last, we were finally home...the mere thought that I could wake up tomorrow and stay at home instead of trekking up to the hospital was SUCH a relief. I had come to the point of finding hospitals unbearable, made worse later in the year when my father-in-law would be hospitalized for cancer surgery and guess where my weekly respites were spent? Yep...at yet another hospital. It seemed to me all I knew anymore was illness, nursing, and hospitals.

My relief was short-lived however. A couple of nights later my mother had secretions, a LOT of secretions, and we were up most of the night instilling her with saline and helping her cough out. Finally about 5 a.m. she started to panic, mostly due to overtiredness and fright, and sat up, held on to her bedpole and was breathing VERY rapidly. I called 911; an ambulance arrived quickly..her heart rate was sky-high and her respirations way too fast, so off to the hospital we all went, and she was admitted to CCU. Her lung specialist said...mucous plug; her nurse said...infection...Turned out the nurse was right. Not one infection, but two older infections; MEANING she was released from the hospital the first time with these growing in her already...noone had done a chest x-ray to check her thoroughly before they sent her home. Intravenous antibiotics had these under control in a few days and back home we went, it was 2 days before Christmas.

Having paid very close attention before my mother's release as to how and what to do regarding her care, I felt fairly confident, but now looking at all this strange equipment in my home that would keep her alive I felt....fear. Not to mention her life-sustaining hole she now had in her neck; she eagerly awaited the day it could be closed up; my husband and I knew that would never happen but did not have the heart to tell her. I had asked her a few months after we were home if she had ever looked at it in a mirror....she said "No, I know it's there but I can't bring myself to look at it." I was thankful her trach never bothered me or we would have been in big trouble; I have no idea how or why it didn't because the norm for me in previous years if faced with something like this would have been to literally freak out. My husband told me the first time he saw her trach it bothered him, but thankfully was able to overcome that to where he could easily clean her trach area and do manual coughs by injecting saline into her lungs through her trach. He never could bring himself to suction her lungs...I understood completely, but he still felt guilty when she had more secretions and I would be up and down all night suctioning, usually ending up dragging a blanket in her room and trying to catch a bit of sleep on the floor, so as not to keep him up all night too.

We eventually managed to settle into a comfortable routine and our first two years as caregivers went rather smoothly. Home Care provided us with a 4 hour nursing respite each week, later upped to 2 a week, a Home Health Aide came once a week to help my mother with a bath and set her hair, and a Physical Therapist came weekly for the first year to help her with her osteo exercises. How Home Care does the respite bookings was to put up a big chart with who wanted what and when; available nurses would pencil their names in where they were free to work. Our first few nurses left a lot to be desired I'm afraid, and we would arrive back home after our evening out to find a very bored and unhappy looking mother; the nurse usually sitting quietly somewhere reading. My mothers eyes would light up when she saw us, and after the nurse left we had a very wide awake, talkative, usually hungry, mother on our hands....these first few nurses simply did not know how to relate to an elderly person...never thinking that she might like to talk, or that she might like tea and some lunch. My mother was very unselfish and not a complainer so there was no way she was going to ask to stop the respites, but we just felt bad leaving her anyways. This all came to an end into our second year when 3 different nurses began scheduling with us. WHAT a difference!! These nurses actually cared; not just about my mother but about us. They talked to my mother, they played cards with her, they looked through photo albums with her, they had tea and lunch with her, sometimes bringing things from home they had baked, they did a foot soak for her, sometimes they painted her fingernails; one, knowing my mother was an animal lover brought little kittens along, even bringing a 3 day old fawn from her deer farm. We never arrived home again to see her bored and wanting for anything...they were SO good for her, and they all know how much we appreciated that. They still call and come over to visit.

Our days were pretty much the same, as is the case I think with most caregivers, especially of an elderly person. Most of my mornings were spent sterilizing trach equipment and doing extra house cleaning after being told by a Respiratory Therapist that even so much as a stray hair getting in the trach could lead to an infection; meals were also a challenge...How DO you cook without salt? Salt is in EVERYTHING! Anything canned, sodas, sauces, processed meats...it is everywhere. I learned to substitute in recipes...saltless spices for salt; sauces made with fresh vegetables instead of anything premade, etc....OR I would just make 2 seperate meals...one normal one for my husband, his brother and I...and one salt-free one for my mother. Her doctor said it was important to let her have some enjoyment so not to be too rigid, so when her ankles weren't swollen badly we let her eat whatever she wanted...and if they did swell I'd just give her an extra novo-semide(water pill) before bed. It'd have us up a lot during the night because she'd have to make several more trips to the toilet, but sleeping through the night had become a thing of the past for me anyways.

That was one of our first crises we faced upon bringing her home. How was she going to wake us up during the night if she needed help? She would not be able to talk because her trach would be unplugged and the trach mask on, making it difficult to even plug the hole with her finger. I called a couple of Medical Supply companies whose only "devices" were very costly and involved a complicated plan of her pressing a button..which would summon someone on a phone pager..who would then in turn call us. I thought this was rather dumb as we were just in another room down the hall...finally after putting our heads together and thinking, we opted for a 15 dollar wireless doorbell from Radio Shack. She had the buzzer mounted within reach on her bedpole, we had the sound box on the wall in our room....it worked WONDERFULLY!

Early in the year, 1999, there was talk of a nursing strike...I thought "Oh great!". We depended heavily on our nurses, not only for the respites but more importantly they gave us peace of mind each time they were here, listening to her lungs to alert us of any funny sounds or decreased air flow, checking her blood pressure and heart rate. Sure enough, in April the strike began, and the next day the phone wouldn't stop ringing. First was a rep from SUN(nurses union) informing me my mothers nursing would be terminated, next call was a different rep from SUN, informing me my father's nursing would be terminated and that I would now have to look after his meds. Then a Home Care rep called, I told her yes, I know all about it, she proceeded to get pretty mad when I told her how I knew...apparently SUN was not to be calling clients. I sighed; the mixups and disorganization of our medical services not surprising to me any more. I got off the phone and wondered how I was going to manage my mother's care AND do my father's meds without help. I had done his meds a couple of years before this, after he'd had his first stroke and was released from the Rehabilitation Center..and that was precisely why I convinced him he needed Home Care. I phoned him 3 times a day to take his pills but because of his short term memory loss(post stroke dementia), a lot of times he would forget to take his pills even if the last thing I said before hanging up was "GO TAKE YOUR PILLS." I was not even sure any more what pills he was on or the dosages.
I figured I better get busy and organize myself as best I could, not having any clue how long this strike could last. I called the nursing department for his area, asked her to please pull his file and fill me in on his meds. She gave me a list of pills and dosages, none of the names seemed familiar to me but I wrote everything down and said "are those all?"...to which she hmmmed a lot and said "I think so."....I thought yeah....REAL organized.

What we planned to do was... my husband would go over to my father's, gather up all his pills and his weekly pill dosette, phone me, and we would attempt, with home cares list and my memory of doing his meds before to get the right pills and the right dosages in each of the little dosette chambers. That turned out to be futile...none of the medicine names home care gave me matched any of the names of meds on the pill bottles. My exasperation was accelerating at high rates of speed by this time but I finally had an idea...It was my last one so I hoped!...*L*...I called his pharmacist! She, thank God was much more organized and we finally figured out which pills went where. Now...to make sure he TOOK the pills! I decided when I would phone him I would tell him to take his pills while I waited on the phone, then he was to come back and tell me that he had taken them...hoping he would not forget he was even ON the phone. Thankfully it all worked out fine...:)

Patients, even critical ones were being transferred to other provinces and even the states during this strike, important surgeries were cancelled...it was scary. Silly me decided to try to get in to get my mother's trach changed (we went every 2 months to the hospital where a respiratory therapist would put a whole new trach in)...the therapist I spoke with apologized, but said the hospital was pretty much empty, they were doing what usually the nurses would do, and that we wouldn't be able to get in the hospital anyways as the doors were locked. A couple of days later someone from SUN called again, they were planning to interview a couple of caregiving families, complete with media coverage to find out how the strike was affecting them, and wanted us to participate. It would be done at the hospital. I said no without hesitation...I would have to drag my mother along as I had no respites, and we all know where the easiest place to "catch" something is...the HOSPITAL! Then if she did get an infection, and the hospital doors are closed, where would I take her? She said she would look into bringing the panel, the other family, and the media into my home to do it and get back to me. The next day the strike was over, having lasted only 10 days, so we did not have to worry about this interview....I had thought to myself that a stressed out overtired me would sure look cute for the cameras. Everything had went so well, with my father's meds and my mother's secretions stayed watery thin, her ankles had never looked better. I teased her that she looked and felt SO good and no nurses were around to see it..:)