the emotional aspect of dealing with an ill spouse and parent

Now, I've been stressed.  We've had such a full plate for quite some time.  My mother is 72 now.  In spring of 2008 I remember my mother calling me and mentioning that her legs weren't working like they were supposed to.  Like one of her legs were dragging and heavy.  She mentioned she was going to see her doctor about it and we kind of left it at that.  My mother, at that time, lived in North Carolina in an apartment by herself, near her sisters who lived in neighboring towns.  So, I would talk to her on the phone once or twice a month.  I didn't hear much about her situation again until shortly before she came up with my aunt and uncle to visit.  My Aunt Lu (her sister) and my Uncle Marty were coming up to go to a reunion so she was going to tag along and visit with us for a couple of days.  She gets to our house and wow...what a surprise.  My mother went from this older woman with energy and spunk to this woman who moved slowly and couldn't talk very well and just to sit down it took a minute or two for her to get her legs to bend at her knees so she could lower herself onto a seat.  She had trouble forming what she wanted to say and she talked very softly.  There was worry that she had cancer. So, I sent her back home with my aunt and uncle with the promise from her to see her doctors and get down to the bottom of this.  It's easy to forget the seriousness of things with other people when you don't see them and she didn't talk much about it to me on the phone and if she did she didn't really get into it and how bad it really was getting.  I imagine she didn't want to worry me or any of my brothers.  So, fast forward to December and I get a call from my Aunt Pauline, my mothers other sister who lives nearby my mother.  She tells me that my mother is real bad.  She thinks she's dying.  I have to get down there and do something.  So, I call my brother Liam and we form a plan to drive down there and bring her back to my house and I'll get my mother seen by my doctor so we can find out what's going on.  But we manage to get my mother on a flight up to Boston and I'll pick her up.  She is so bad that she needs a wheel chair to move about the airports because she just can't walk fast and she doesn't have the energy to move much.  I am shocked but hide it.  She comes to my house and we get her into see my doctor and my doctor, Dr. Fuller, thinks she might have Parkinsons.  She refers her to a neurologist at the Worcester Medical Center.  She manages to get my mother seen before she has to leave to go back home on Jan 8th (the day after Ben's 2nd bday).  So, we go to see this doctor and he confirms that yes, she has Parkinsons or he believes she does by her symptoms.  He prescribes medicine and she goes home.  She's going to move back up to Massachusetts and live with me and my family.  We move Lauren downstairs into the finished basement, with Jenny and my mother will take Lauren's old room.  My brother's Liam and Ray move her up here..driving a UHaul truck and her car all the way.  When she walks through the door it was like night and day.  She was moving, talking and thinking so much better than when I'd seen her less than two months before.  But you have to understand what it is to worry about your parent.  You go through your life counting on your parents to guide you and worry about you and then when the tables turn, it's stressful beyond belief.  You are now the guide and worrier.  My father had passed away the year following my marriage to Andy (1998). so I didn't have to worry about him and when he was ill, I was living almost a 100 miles away and so was removed from it.  I wasn't that close to my dad so it didn't have this huge impact on me like this was with my mother.  I felt like a weight had now settled on my shoulders.  Don't get me wrong; I always knew I'd be my mother's care giver when that time came.  I just couldn't picture any of my brothers taking that on.  I just never thought I'd have to worry about that until I was at least well into my 50's at the earliest.  This all started in my early 40's after having just given birth to our youngest child.  So, not only did I have my two girls and a new baby and my husband to look after, I now added my mother to the mix and I felt adrift; not quite sure how to go about this.  But, her having started that medicine (carbidopa-levodopa) was really working for her. While she was with us in December, she'd fallen a couple of times and that was very alarming.  She was walking and her balance was so much better than in December.  I felt somewhat relieved and felt I could take a step back a little bit and she could take care of herself for the most part.  We, over the course of the year and a few months, had gone back to the neurologist, a couple of times because it seems that the medicine will stop working at it's current dose over the course of three or four months and she'd get to moving slow again and feeling ill.  She was starting to lose faith in this doctor because it just seemed he didn't care.  She was just a patient and he made his money by her and that was it.  I don't blame her.  He was one of those doctors who asked questions but didn't really say much or answer questions well.  In June of 2010 our landlord of the house we'd been renting over the past 6 years said that he wasn't going to renew our lease. So we worked out a deal with him that we'd try to find a place over the course of the following 5 months.  We managed to find a place for us to move in on Sept 1st.  At that time my mother was having issues with her balance again and she really didn't want to see this neurologist again.  So, the last week of August we were moving some totes into the new home.  I was outside with my husband when his friend, Don, who was helping us move the totes over to this new house, said that my mother had fallen on the stairs.  We run up the stairs to find her struggling to get up at the top of the stairs.  Apparently she had tripped on the last step and fell into the corner of a bedroom door to her left, splitting open her forehead.  She'd also held onto the banister and managed to wrench her shoulder as she tried to keep herself from falling.  I rushed her to the local ER.  Thankfully she didn't need any stitches and she didn't have any concussion or internal injuries.  We brought her home.  But now her shoulder was very sore.  A visit to her doctor had her with appointments with a physical therapist.  Then it was moving day.  Thankfully it went off without a hitch.  But I'm telling you..since we've moved in..we've had one friggin thing after another.  The first couple of days we can't get the heat downstairs to turn off.  It's 90 degrees out and the heater is making it like 100 degrees down there...it took almost a month to get an electrician over here to hook up a new thermometer.  In the meantime our landlord has us turn it off via the main electric box. Two weeks after moving in..we have the bathtub and toilet overflowing with waste b/c apparently there was a blockage out under the road in front of the house.  We had to call the landlord (who is living in India)...we get RotoRooter over here and after two days they find that there's a bow of the pipe line that is making it easy for things like grease to build up and cause the blockage.  Okay...we dealt with that. Then Ben somehow gets into my mother's pill box and three of her Parkinsons pills are missing.  We know he had something in his mouth but we don't know if he ingested all three or just one.  Called the poison control number and they say get him to the ER stat!!  So, we bring him over there and spend hours there, having him drinking chocolate laced charcoal to help get rid of the toxin.  He didn't show any signs of overdose or anything , thankfully, but what a day.  The next thing was my mother.  She'd been having pains in her upper chest area under her right rib area.  I had had my gallbladder out in 2002 and had been having gallbladder attacks for over a year before it was discovered I needed my gallbladder removed.  So, I knew about that kind of discomfort. As Thanksgiving approached in 2010 my mother seemed to be having small attacks on a daily basis.  She started altering the way she ate in an effort to alleviate her symptoms; the pain under her ribs and nausea.  She even stopped drinking coffee because it seemed to set off the pain.  November 23rd she felt especially sick and kept to her room most of the day.  She tried eating dinner that night and decided to just go up to her room and try to rest.  Around 11pm that night, she came downstairs saying she thought she was having a heart attack and that the pain was excruciating.  I called 911 and had an ambulance come and get her.  Thankfully Andy was home so that he dealt with the kids.  As we were waiting for the ambulance I hurriedly pulled on some pants and a shirt since I'd been in my nightgown.  I never dressed so quickly.  Within five minutes they were all here..lighting up our street.  An ambulance, a fire truck and at least two police cars with their lights on.  Sigghh...such a production.  Well, they loaded her up in the ambulance and I followed over.  The ER folk wouldn't let me go back to see my mother 'until she was in the system'..frickin a...I was trying to be understanding but all I could think of was how upset she must be being all alone and all...well, without me that is.  Finally they let me back there and she is still in a boat load of pain.  She kept moaning; real loud too.  The doctor was really an intern and he had her go pee in a cup and then took some blood.  Anyone experience how incredibly slow the ER can be unless you are dying on them right then and there?  Jeesh.  Hours go by and finally the doctor comes back and says well, nothing is showing up other than she has a bladder infection which can sometimes get bad enough to cause that kind of pain.  Did you know that a kidney infection is still called a bladder infection??  How stupid...a kidney infection is just shy of some serious shit..like close to deaths door..it's like they downplay it or something.  Well, anyway, just before she was discharged this twerp of a doctor comes back with this lap top like ultrasound machine and tries to see her gallbladder.  He says he can't see her gallbladder and that she should go to her doctor if she continues to have the pain.  It so happens that this was Thanksgiving weekend so you couldn't get an appointment, they sent you to the ER if you felt badly enough..sigghhh.  So, we were practically pushed out of the ER...I had to bring my mother to the entrance in a wheel chair...it was kind of like they were saying 'don't let the door hit you in the ass on your way out'.  So, we go home in the wee hours of the morning.  She is tired from the meds they gave her and went to bed right away.  I do too.  Thankfully it was a vacation from school for Lauren too so I could lay in bed.  I think Andy stayed home that day but I'm not sure.  Anyway, we don't do anything real special for the actual holiday because my family (brothers, their spouses and niece and nephew) were over the house the weekend prior to this for dinner then.  So, Thanksgiving I made a small turkey for our little group but Mom ate very little.  She wasn't as in that much pain as the previous night, but she had a lot of pressure in her mid section and she felt nauseous when she ate or drank.  I made sure she was drinking and tried to get her to eat little bites of anything.  The next day was Friday so I called the doctors office.  The office was closed and there was an on call doctor.  He prescribed a antacid med and when I said she's in pain for Christ's sake...they were like..well, ibuprofen if it's really bad.  Grrrrrrr....so we gave that a try oh yeah..she had antibiotics for the 'bladder infection'...later on that day though, the hospital calls to say that her infection was antibiotic resistant and she needed a different kind of antibiotic..so they prescribed that and off to the pharmacy I went.  I noticed Saturday that she seemed to be jaundice but I couldn't be sure.  The light in this house isn't the best and she seemed to be okay other than she was nauseous all the time.  She'd eat a bite or two and then throw it back up.  I was getting real concerned.  For some reason though, it didn't occur for me to bring her back to the ER.  I should have in hindsight..as soon as I thought she had jaundice.  Anyway, my brothers Liam and Shaun came by for a visit and I made some turkey soup from the leftover turkey carcass; thinking the broth would help her feel better.  By Sunday evening she was pretty jaundiced and dumb idiot that I was I said, lets wait till the office opens tomorrow and we'll go see Dr. Fuller.  So, Monday we went to see her in the mid afternoon hours.  My mother was positively glowing by then and still having a lot of pressure pain and nausea.  She sent us to the ER immediately..but this time to the Memorial campus ER instead of where that twerp was...if I had seen him then I would have knocked him flat b/c all this would have been averted if he'd just had her get a ultrasound from the big machine instead of that dinky thing that he clearly didn't know how to use very well.  Let's just say; I will never go to that ER ever again..they are incompetent idiots there.  So, we go down to Memorial ER and she gets taken right away.  Many, many and many more hours go by...I was there 6 hours before they finally said (after many tests and an MRI and ultrasound) that she had a blockage in her bile duct of her gallbladder leading to the liver.  She was admitted to the hospital.  Apparently a gallstone had lodged itself in that bile duct which is probably what caused that horrible pain she was in that night the week before.  What happened is that now all that bile was backed up in her liver and had no where to go and it became infected.  So, her gallbladder was infected and now her liver was too; it had a couple of cysts in it that were infected...a real mess.  I didn't realize just how close to being deathly ill she was.  It took the hospital/doctors a day and a half before they finally did a procedure (which name escapes me at the moment) where they went down her throat, through her stomach, through the small intestine and up into the bile duct...so they could dislodge the stone, remove it and then put stents in those bile ducts to prevent any more stones from lodging there.  Because of her liver infection she couldn't have the gallbladder out right away or there was a very high risk of infection to other organs.  So, the biggest thing was to get the raging infection under control.  It proved to be very resistant to antibiotics.  Finally after a week of trying different antibiotics they were able to find one that worked.  Her jaundice was disappearing and she was feeling more energetic and able to get up and walk around.  After almost two weeks of being in the hospital she was discharged with the instructions that she had to give herself shots to thin her blood..the infection was causing blood clotting..and she had to take an oral med (but that escapes me what that is).  Because it was such a resistant strain of infection; she had to have antibiotic infusions..so in other words...she had to go to their infusion center every day to have antibiotics administered via IV.  That went on for a month when she went to see the infectious disease doctor (she had several doctors...infectious disease doctor, doctor who did the stents, and doctor who was going to remove the gallbladder) to make sure all the infection was gone.  She had an MRI done a few days before...but she still had infection but it looked like the infection was getting a lot better so they deemed that she could stop the infusions and could take oral antibiotics instead.  That went on for another month...meanwhile she met with the stent doctor who said she had to have another procedure to take out the first set of stents to replace them with longer lasting stents.  These stents would stay in until she had her gallbladder out.  Once she had it taken out then this doctor would schedule a time when they would take them out.  She also met with the doctor who was going to take out her gallbladder and he was like...have to be absolutely clear of any infection before he would do that.  So, Feb 22nd she had new stents put in and then she saw the infectious disease doctor after another MRI and they declared her cured of all infection.  This is when this doctor showed us the original MRI and the stone that was blocking her bile duct.  I asked if that was actual size and he says..yes...folks..that 'stone' was the size of a small marble!!  No wonder it was so painful..it's amazing she survived that.  So, once she was declared cured of infection, she was able to schedule her gallbladder removal which as in previous post, I mentioned it was March 28th.  Now in the meantime; we asked Dr. Fuller to recommend her to a new neurologist.  She referred her to this woman doctor down in Hopedale..about a 1/2 hr drive from here.  She said she was real good.  Well, her first appointment was in Feb sometime and we sat in that waiting room for almost two hours before we had to leave.  I had to pick up Lauren from school, although i can't remember why, so we left the doctors office without seeing the doctor.  We went back a month later and was able to see her but after waiting another hour before seeing her.  She seems like a real good doctor but she has no problem with making people wait.  We were in her office for at least an hour talking with her.  I felt bad for those waiting in the waiting room.  My mother has a big problem with being able to sleep which is an issue that people with Parkinsons deal with.  Nothing seems to help.  She prescribed another pill that should have helped but it isn't. She's still having issues with not sleeping over night.  She used to be up by 7 or 8 a.m. every morning but now I don't usually see her until around 10 a.m. unless she has an appointment somewhere.  One pressing issue is that my mother has high protein levels which can be an indicator of some kind of cancer somewhere in her body.  The year before she moved here she was seen by an oncologist who did all sorts of tests but couldn't find any cancer.  Some older folks just have high levels of this protein and it could be decades before it progresses to anything like cancer.  There's a name for it but I'm not sure.  So, her new neurologist insists that she be seen by another oncologist just to be sure but my mother has put it off till this July.  Frankly...it's a good thing because I have enough on my plate with Andy being sick and all.  I probably will handle it, but if she's sick too...well she is with Parkinsons, but if she has cancer on top of that and..well, that's just so much to deal with.  Now on to Andy...my hubby...my world...my rock.  This whole thing has just turned my world upside down.  I normally am not so weepy and all but the notion that I could lose my husband before we both are old and grey is just too much.  I find myself wanting to curl up in a ball and just bawl my eyes out.  I'll be driving in the car or watching tv or reading and I will be overcome with the need to cry and I'm so sad.  I am trying very hard to be strong for him.  I'm succeeding for the most part but this 'weakness' just hits me sometimes.  I guess that's normal but it sucks.  Big time.  We have been through so much in our little bit of time together.  We've had 3 miscarriages, two births, a death(my dad and two years later, his dad), two moves, I've had two surgeries, Andy has had two shoulder surgeries and a tumor removed from his breast which was thankfully benign...my mother and my brother Shaun moved in and then they moved out, we had to declare chapter 13 bankruptcy (still paying that off)then my mother moved back in and Andy just had another shoulder surgery this past December, then my Mother's illness/hospital stay and now this with Andy.  I don't know how I'm going to handle the upcoming months, but I know that I'm feeling very adrift.  I am determined though, to imagine Andy as an old man, the two of us sitting in our rocking chairs doing 'our thing'.  :)  He and I get annoyed with people and he'll say "Bastards!!" and I'll say "Assholes!!". :)  We're joking around more often than not, but it's usually Andy trying to take the sting out of a moment.  He's so good for me.  He makes me laugh when all I want to do is yell or laugh or cry.  He has always been an active participant of our household.  Cleaning, changing diapers, taking baby duty or now toddler duty on the weekend mornings.  Working from home when I'm not feeling well or haven't slept much the night before.  We have our moments though.  I annoy him or he'll annoy me..just like any other relationship.  But at the end of the day, we never, ever forget to give each other a kiss and hug goodnight and an I love you and sweet dreams.  This challenge that we are facing is turning our world around and nothing will ever be the same.  It sounds dramatic, but it's the truth.  He has a huge mountain to climb and there might be times when he actually falls back.  I pray that I'm to the task of keeping him going and getting up and over this mountain.  Over the coming months I'll post about the physical and emotional aspects of dealing with this horrible illness.  I know that things could be worse...I just hope it never gets to be that way.  Andy says I'm his rock and I honestly don't feel much like one now; but somehow,  I will do my best to live up to that.