Something else to overcome...on my mother's good days there was no reason why she couldn't go out somewhere with us. She seemed very hesitant if I tried to bring up the subject and finally admitted she was self-conscious about her trach. Aha!! I just KNEW that was the problem and already had a solution....we just tie a silk scarf around her neck as if it was an accessory to match her clothes and noone would see it. She went for that but also admitted that it would just be too much work for us....hauling her, her wheelchair and an oxygen tank along with us. I laughed and said.."And when have you ever known us to run away from a little extra work?" So began our outings...taking her downtown or out to lunch, our forestry park (of which I was shocked to find our large zoo did not have wheelchair accessibility to the washrooms but we managed..:)). It was good for all of us to just get away from the house for a while but we only could if she was having a good day, and I could not get her over her embarrassment of coughing out away from home, even in the privacy of a bathroom stall so if she started coughing we knew to speed up whatever we were doing and get back home.
She felt most comfortable at home in her room though, we'd fixed it up as a bedroom/sitting room....she had a table, chairs and her tv in there...and spent a lot of time there. We hung a lot of her needlepoints and rug hookings on the wall, and tried to give it a homey feeling rather than only concentrating on the medical equipment that was in there. We did have to move her oxygen concentrator into the dining room, and maneuver the length of tubing along the walls though because that machine was so noisy and the heat it through off was unbearable...getting too warm always brought on a spell of breathing difficulties. When my brother-in-law moved in he soon learned to put heavier clothes on in the summer because our a/c was usually cranked to keep her comfortable. That wasn't even enough sometimes in the summer when the humidity was high and we would have to put a fan in front of her. High humidity always seemed to loosen up more lung secretions too; every morning in the summer the first thing I'd do is put our weather station on, check the humidity, and if it was high quickly get my work done because I knew most of the day would be spent injecting saline or suctioning and helping her with her feeling of suffocation.
She kept busy a lot of the time with hobbies like knitting or crossword puzzles, and she loved to watch CNN or the cooking channel, eventually getting my husband and I, and all her nurses addicted to Emeril's cooking show. Most evenings we would spend time watching with her, and talking...and I secretly was glad she was not a soap opera watching person or that woulda drove me nuts...*LOL*. I think she preferred spending time with my husband evenings after being with me all day...:), he would clean her trach each day after supper and I would hear them talking and laughing while I cleaned my kitchen. He was SO good with her, so gentle, and would find my eyes filling with tears some days while listening to them.
Tiring? You betcha! Stressful? Yep..beyond words! But never ONCE did I ever want to put her in a home, not that there was any in our city that would accept a trach patient, even if there were she wouldn't have seen the inside of one. I am sure my blood pressure went up a few notches every morning when my husband would leave for work. I was so wound up...always waiting for some crisis, I was a lot calmer when he was home. I knew I could handle any emergency, I did fine when anything DID come up, but just felt better having someone else around who I knew cared as much about her as I did.
I was so happy we had all these animals..*L*...they would amuse my mother for hours, and make things a bit more fun for her, probably in a roundabout way making her feel better healthwise. She never had to exercise alone with her walker; our first retriever would get up as soon as he saw her making her way around the house and walk slowly right by her side. She'd stop once in a while and pat him...:) Any time she ate lunch or was nibbling on something she would usually have 2 or 3 dogs staring at her, so she would get them to do tricks and give them pieces of what she was eating...I knew this was not good dog training techniques...but it just didn't matter. I think she ate more just because she found it funny the way they mooched..:). She was very attached to our small jack russell and we let Cleo sleep with her at night. I think the dog being with her calmed her; if we peeked in on them after, she would always have one hand on the dogs head, slowly patting her..and in no time would be asleep. Luckily jacks are very clean dogs...being so near her trach caused us a bit of concern but the mask was on at night...and if it made my mother happy then we would just have to work around it..:). When we had to put our retriever down, and it was sudden, instead of being able to grieve for him I found myself putting all my energy into keeping my mother from being too upset about it. She missed him, and so did we. Although I KNEW I did not really need another puppy to take care of, my husband and I decided we would get another golden, and my mother religiously checked the paper every morning looking for retrievers for sale. It gave her something to look forward to...a new puppy! Finally she found some, 2 litters all at the same farm, 16 puppies to pick from...so we packed her up and went out to see them...they were SO cute..and we picked ours out, the blondest and the fattest little guy...*L*. He, even at a young age was so good with my mother and I see now why that breed is used for the blind and disabled. This guy somehow knew she was not supposed to have her legs crossed because of her heart and circulation, if he noticed them crossed he would obediently get up, go over to her legs and either nudge one off the other with his head, or would just put one of his large paws on top of the offending foot and sit there, until she uncrossed. Many a time I would snicker at them...she would get annoyed with his paw on her foot and tell him to GO...or try to push him away...but he was VERY persistent and I knew he wasn't going anywhere till those legs were uncrossed.
Being a caregiver you sure realize your limitations, I had to miss a few weddings, I paced the house like a caged animal when my mother-in-law had a stroke and everyone was at the hospital but me. And nothing can describe the guilt I felt when my husband had to go search for my father. Alcohol mixed with dementia mixed with potent medications is not a pleasant sight to behold, yet occasionally he can't resist popping into a bar..:(. Before my mother was ill we would both go to find him if he was not home late evenings for his pills. He behaved good for the first year or so and then one evening his home care nurse called that he wasn't home. My husband didn't say anything, he just got his jacket and headed out. Sure enough, he found him at the mall nearest his home, in the bar, pretty much "out of it". He took him home and really REALLY bawled him out, tiredness and frustration surpassing common sense, knowing in this condition he wouldn't remember anything anyways. I think his wrath musta scared my father though, because he DID remember the next morning, and called Alcoholics Anonymous all by himself and agreed to go to a meeting; something I had never been able to get him to do. Due to my father's infarct dementia (similar to Alzheimer's except in the way it progresses; usually brought on by a stroke), him attending AA meetings would be of no use as he doesn't quite comprehend his drinking problem. The one meeting he did attend he spent the time lecturing to the rest of the group about their smoking, until the chairperson politely told him they were there to discuss their alcohol problem, NOT their nicotine addiction...*LOL*. My father suffered another smaller stroke a couple of days later and since his release from the hospital (about 2 years ago), has still not taken another drink....something my husband must have said to him is still sticking in his mind..:). I did feel terrible though about him having to handle this alone, he was MY father, but my husband said...we are married, I love you, and your problems are my problems; I honestly do not know what I would do without this man in my life..:)
