An Introduction to Mom and Me

Thedogmama

An Introduction to Mom and Me

Thedogmama
1278-blooming-flower(Editor's Note: We welcome a new blogger today. @Thedogmama opens us to us with her first blog.)

Hi everyone, welcome to my first blog. (Thanks for listening and from the look of it, for all the support, ideas and help soon to come.) I’m going to start in the middle since my caregiving began long distance years ago with both my mom and Dad. It helps to know I am an only brat, er…child. (So is Hubby by the way…that can make life interesting!)

The date of my (corporately semi-forced, buyout enticed) early retirement was met two weeks later with my dad’s hospitalization in June of 2009. Mom and Dad were 89 and 90 at the time and still lived in their own home in another state, two hours from our house. I had been heading north every Saturday for the last several years to take care of the lawn, take Mom shopping and help when I could as Mom proceeded to nearly kill herself taking care of Dad. Sound familiar?

Mom’s medical issues started in her late 40’s with degenerative osteoarthritis in her hands. Progressing over the years to her knees, back, neck, shoulders… you name it, it either doesn’t move, moves too much, or just plain hurts. She had both knees replaced over 15 years ago, she had low back surgery about 10 years ago followed by post laminectomy syndrome, which in essence means that all the pain and recovery of back surgery did absolutely nothing to relieve the pain running across her back and down both legs. This daily pain was being controlled with 80 mg of Oxy ER twice a day with 30 mg of morphine for breakthrough pain every four to six hours.

We went north for Thanksgiving that year, Dad being unable to travel. After dinner Mom’s neck became so painful it was evident she could not take care of Dad that night. Hubby had to hitch a ride home with the kids while he left me with the car at Mom and Dad’s. Mom was crying and immobilized by severe pain. Dad was just confused. How do you look at a crying 89-year-old and tell her 15 minutes isn’t enough time for the second dose of morphine to take effect? The only way for the pain to stop was for her to lie down. Ah... caretaking.

By February, Dad’s battle with dementia, blindness and frail health led us to several decisions. We would find a nursing home near my husband and I where his needs could be taken care of, we would prepare their house to be sold and Mom could move to her own place near him, us and the grandchildren. Oh, the plans we make…

We did manage to find a wonderful place to finally take Dad. (Anyone with a male knows the lack of long term beds in any facility - we women are in the majority and bless the social worker who worked long and hard to facilitate his move from one state to another!) I do have to digress for a moment to say how truly caring the staff was at his nursing home. His dementia combined with his blindness from macular degeneration led him to see images that were not there. Combined with his increasing agitation and belligerence it made him extremely difficult to deal with. It would have been so easy for them to send him to a locked psychiatric facility for the elderly, but they patiently worked with him to make the last months of his life as good as they could be. They were his family when I couldn’t be there. They held me when I cried and comforted him when I wasn’t there. Who says there aren’t angels?

As it sometimes goes, as soon as Mom was relieved of her caregiving role, her body responded by breaking down. She was hospitalized for pneumonia several times over the next several months. (Not helped by the COPD she insists she does not have). I was still running back and forth between two states with Dad near me, Mom still two hours away. It was the running joke that the dog and I spent more time at her house than we did at our own. Hubby was a saint taking care of everything while I was not home. I had to go slowly, decisions about the house, selling it, moving near me, were still her decisions to make. It took so much longer than I anticipated. She came down to look at apartments, small houses and some condos in a beautiful senior complex two streets from my house. (Perfect I thought - she said the hallways reminded her of a nursing home.) She saw Dad while she was here. How painful that was for all of us. I would say it was the last time he knew who she was. He did not recognize his grandchildren that day, nor my husband.

We slowly worked throughout the summer cleaning out the house and finding a real estate agent for the sale. I was there one week after taking her to the doctor (again) when we got a call from the nursing home. It was time to place Dad in Hospice as his kidneys were shutting down. We made plans for my daughter to bring Mom down to visit Dad on Saturday. She called that morning to say she didn’t feel well enough to come. By 10 that night she called 911 and was hospitalized again. She was transferred to rehab several days later. Dad died 10 days later. She never saw him to say goodbye.

Six sad, LONG weeks later, I had cleaned out, packed up and readied their house to be sold. My second angel was the real estate agent who sold the house within days of listing it. Mom never came home to her house again, she moved directly from the rehab to our house. She now has a mini “apartment” in two of the three bedrooms in the upstairs of our house. One room is her bedroom and the other her sitting room. Our upstairs bathroom is hers now…Hubby and I use the bathroom on the first floor.

She moved it on a Thursday. Monday I called 911 for the first time in my life. As you all know, roller coasters have nothing on caregiving. She has been hospitalized five or six times in the past three years. Medication adjustments, unending vomiting, pneumonia and then unrelenting pain in her right shoulder, upper arm and neck. At first it was just a bruise.  It would come and go. It was black, 3-inches then 4-inches then it would fade away again. But the pain… that just kept getting worse. When it happened it was awful. We would get to the emergency room and I would say, “start at 2 mg. of Dilaudid”. They would look at the 115 pound, 93-year-old little old lady and think I was nuts! Nurses would sit there with the antidote and I would roll my eyes. A shot an hour for three, four sometimes five hours to get it under control, sometimes she was admitted, sometimes we went home. She was bleeding internally into her shoulder.

Last summer after a month of weekly visits to the ER we (Mom, our Doc and myself) had had enough. If someone had said amputate, she would have said, “When?” We consulted with an orthopedic surgeon. No one felt she could survive or recover from a shoulder replacement. Our family physician lobbied hard for him to consider removing the head of the humerus to see if that would relieve the pain. Bless the surgeon and the anesthesiologist who successfully operated on her that day… they found that the joint was completely eroded from a bone spur wearing away at the rotator cuff, her clavicle and nicking an artery causing the bleeding. So they cut the humeral head off, sewed her up, sent her to rehab and she came home two weeks later. Her pain diminished and she has full use of her arm and hand, just with limited range of motion. We just have to remember it is only held together by muscles, ligaments and skin!

She has managed to stay fairly healthy since then, but is starting that long steady decline, the progression from a cane to a walker, steady to unsteady, more arthritic pain, slowly losing weight, the short term memory loss, the slight confusion in the evenings. In January I didn’t think she would live the month, February and March she was better. In April we found out wet macular degeneration has taken the central vision in her left eye. Every time the visiting nurse thinks Medicare will deny her services, Mom has a crisis that winds up keeping her on service. It was pneumonia again in July. We find it takes about six weeks for her to get back to feeling good again.

She was finally on her feet again, well enough to get out for a much needed haircut and lunch. We had a lovely time. I was downstairs when I heard the thump. A pretty big thump. Up the stairs I go. There she is, sitting on the floor with her walker down there with her. What happened? Just the normal thing we all do, she was trying to do too many things at once. She was distracted and when she backed up to sit on the bed she didn’t realize she was too close to the end and slid right down on her butt! She seemed okay, she said nothing hurt, just a little pull in her groin. We managed to get her up and she could walk, so we waited for her doctor to come for his regular visit that day. (How about that - a doc who makes house calls!) He checked her out, thought it could be a strain but to keep in touch if anything changed. In three days she could not put any weight on her left leg. One ER visit, two clear x-rays and one CT scan later she was diagnosed with three very small (but painful) fractures around her left pelvis. Pelvic fracture, not a great prognosis for someone pushing 93 - hard! So defying the odds again, she spent three days in the hospital and headed to rehab.

Finally…my first “vacation” since her last stay in the hospital. The weight of being her constant caregiver is off my shoulders for a while. Usually I feel great, what is wrong with me? I just plain feel lousy. It must be those damn hot flashes and the heart palpitations they bring. And of course what about that constant companion stress? After a couple of days I call the doc, of course he is on vacation! So I say to Hubby that night, “After I get you dinner I think I am going to the ER, I just don’t feel right.” That went over like a lead balloon. Needless to say he didn’t think dinner was too important, neither did the ER nurse who took care of me. The only good thing about that evening was I saw the same ER doc who took care of Mom the previous week. Other than the fact that he looked about 12 years old, being as cute as a young Mikhail Baryshnikov was a definite plus in my eyes.

Six hours later I am told that my magnesium is low and that my EKG indicates that sometime since a 2010 EKG I have had a Left Bundle Branch Block. Doesn’t sound too good to me, like something is wrong with the electrical system... you know, the one that runs my heart!! But just go home, give your doc a call for a follow up and bye, bye.

Yeah, whose doc is still on vacation? Mine. Like I want to call his covering office? They don’t know me from a hole in the ground. So I grit my teeth, spend a harrowing week perusing the internet and call the following Monday to say surprise, for the first time in the last 20 or so ER visits, I was the patient. So, yes, why don’t we make an appointment with a cardiologist for you? Oh goody. I must not be dying because the appointment is in two weeks!

I am still feeling lousy. I must say it takes almost as much time to care for your loved one in a nursing home as it does when they are in your own home… you just get to sleep better. By the end of the week I call my doc to beg an appointment. And I do just what I hate to do. They are so accommodating: “Can you come in at 11?” Uh, well, no I have to go with my mother from the nursing home to the orthopedic surgeon’s office for a follow up at 11:15. “How about 2?” Yes, yes, yes…thank you very much. So my doc sees me, is not too happy with my blood pressure, adds another med and says, “Why don’t we schedule you for an echocardiogram next week? That way you will have the results by the time you see the cardiologist.” Okay, do I really have a choice? At least Mom is still in rehab, for one more week.

Mom is now home and the circus begins again: VNA, home health aides, physical therapy and now appointments for myself to balance.

At least the cardiologist is cute.

“So I suppose you didn’t know you have a bicuspid aortic valve?” he states. What, is he trying to be funny? I came in to find out about this here bundle branch block thingy and he now tells me I have a congenital heart defect? Oh great, this is just getting better and better. Of course what does that mean? More tests. A Lithium stress test and a Holter monitor for 24 hours, and all I know is I still have to go see the cardiologist for the results in two weeks.

Mom has been progressing well, coming down the stairs (via the stair lift), walking around independently with her walker and generally feeling better until this week. I am hoping we can soon reduce the 120 mg of Oxy ER back down to 80 and start reducing her breakthrough meds as well. Ha, that would be way too easy, wouldn’t it? Tuesday the physical therapist was here. She is now complaining about pain in her other leg and buttock. He checks her out and is not happy. She says the pain in the right side is at about an 8 when she puts weight on it. Really? Don’t you think she has been through enough? I manage to get her out of the house and down to the hospital for hip and pelvic x-rays. The office calls to tell us report: “Degenerative Changes.” Tell us something we didn’t know. Mom does not take the news well. I know she wanted to hear that there was something wrong that could be fixed, not the catchall arthritis. She has been in tears every day this week. I call the doc back and we adjust the pain meds again, how much can she take, she is getting so tired of this. He comes to visit her the next day and consults with the orthopedist. Either she has pulled a ligament (a possibility since she has been relying heavily on that side while she could not bear weight on the other) or she has fractured something that would only shot up on a CT or MRI. Either way, the treatment is the same. The pain meds are increased, (we are going in the wrong direction here!) she is hobbling along and we will see our poor orthopedic surgeon in two weeks to follow up.

Two weeks seems to be our schedule these days.

If you have managed to plow through this you are up to date in my life of caregiving. Sainthood seems appropriate for you. It feels so self-centered to put it all down in print. Mom is such a sweet woman and thanks us daily for welcoming her into our home. I don’t understand why she has to suffer in so much pain for so long.

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Mar

Just getting to know you now in 2015, in the context of your recent loss of your Mom. She sounds like a strong and stoic woman. Because I chatted with you tonight, I am comforted to know that your heart situation must have turned out well.\r\n\r\nLooking forward to reading through more of your story ...\r\n\r\nMar

Thedogmama

Thanks Janet, good luck with the scan tomorrow, I hope it will give you some answers. Don't you just wonder how you got it all done when you were working?

Janet

Hi I know how you feel I have been caregiver for my mom for almost 5 years, but in the last 6 months it has been constant. My mom is 88 soon to be 89. Luckily I live 2 minutes from my mom house, plus I do have two brothers who live close by, but boys will be boys. My hubby is a lots of help. She fell two weeks ago and has internal bleeding, she will have a Cat scan tomorrow and hopefully we will get the results by Friday afternoon. This is my second time being a caregiver, last time it was for 3 years for my 99 years old grandmother, who moved in with us after my dad died. We were both working full time then so it was tough. Now we are both retired so we can do more for my mom, plus I now know more about the system. Sorry didn't mean to get so long winded. I hope all your tests come out ok.

darciejane

Hi dogmama, welcome! Thanks for a very intense post, which hopefully made you feel better just from writing it all down. Wow! I am fairly new here and I care for my 91-year-old widowed mom. One of the things that has happened to me since coming to this site, is in realizing how lucky my mom is to have relatively good health for her age (well, that's something I already knew). It has been hard for me to remain patient and compassionate with her when she gets whiney over trivial things. I've actually tried to explain to her how lucky she really is, using a few examples from this site and from my place of employment, but.....you really can't tell older folks they are lucky, when they are feeling anything but. In any event, I salute you for all you have going on there, and hope you can take care of yourself somehow!! Remember, it's like the flight attendant says, you have to put on your own oxygen mask before you can help anyone else! Cheers!

Thedogmama

Thanks Pegi. I loved \"I am woman, hear me roar.\" We do defend our loved ones with gusto, don't we? I am looking forward to reading about other caregivers and their ups and downs. It already helps overcome the \"am I in this alone?\" feeling.