I Know Where to Turn for Support…

2011-09-27_10-45-52_642-300x169

This photo was taken during my first first trip to the ocean after my mom’s death.

Hello everyone,

I know that it has been a long time since I’ve posted anything.  A few of you know me, but many blogs are new since I was taking care of my mom, who passed away in July of 2011. I feel like I could write a book about the what has happened since then, but I will try to keep it brief!

For those of you who don’t know my story, I cared for my Mom for about five years. She needed round-the-clock care because of severe arthritis and very limited mobility. She also had moderate dementia. We were able to keep her at home until the end, other than a few short-term stays in rehab or adult family home.  She was my very best friend, and the grieving process has been a huge part of the last year and a half. She would have been 89 years old yesterday.

My blog name, The Unit Known as Shandi, was chosen because my sister and I worked together to care for Mom. My sister is 16 years older than I am, with her own health issues, so she couldn’t do much of the hands-on part of caregiving. But, she was my rock, my sounding board, my person to go to when research needed to be done. And, she loved Mom and I unconditionally and gave everything she could to both of us. “Shandi” is a combination of our names. Mom always mixed up our names, because they sound a like. When she started having memory issues, she would sometimes call us “Shandi”, and the nickname stuck. We teased her that she’d finally solved her issue with mixing up our names.

I wish I could say that life has been easier without caregiving, but that’s not what has been in store for us. I feel like Job from the Bible at times! This is what has been happening for us:

1) Shortly before Mom’s death, we had a major landslide in our backyard (we live on the river). The top of the landslide, because we lost so much of our backyard, was only 12 feet from the foundation of our house. They county “yellow tagged” our home, which meant we couldn’t live in it during the rainy season (where we live, that is much of the year). In December of 2011, we moved our house 40 feet forward on our lot, away from the slide and the river. By last summer, we had managed to put the house and the yard back together enough to pass our final inspection. There is still a ton of work to be done, but it is livable now.

2) My husband, who was amazing with my Mom and provided the majority of the nuts-and-bolts of keeping both our house and Mom’s (we built it for her next door to us 7 years ago) running, had back surgery three years ago. It didn’t heal well, and it was a long path to recovery for him. He did what he needed to do, and went back to work in summer of 2012. A few months later, he had a major fall and hit his head and his tailbone. Long story short, he is in constant and extreme pain. I was working full-time from December of 2011 until fall of 2012, when I resigned because my husband’s health was going downhill quickly and he didn’t seem to be able to manage on his own. He spent five days in the hospital in January in absolute agony. All the drugs they have in their arsenal at the hospital did little to relieve it. He couldn’t even get out of bed on his own. At this point, he’s up and around for limited time with a cane and is driving short distances, but there seems to be little rhyme or reason to when/why his pain shoots through the roof. I’ve driven him to many, many doctor’s appointments in the past few months, gathering information and trying to come up with answers. As of today, we know that:

  • It is his coccyx that is the problem (which is what he’s said all along, but his old spine doctor felt it was related to his previous surgery and didn’t listen to him). It has taken a new spine doctor, who gave him a shot that numbed the area for four hours. During that four hours, my husband had NO pain. We are waiting for approval for a physical therapist that specializes in that area, and a steroid injection under Xray. If that doesn’t work, they will do further imaging. We do have PT coming in to the house, but he needs a specially trained PT.
  • His liver enzymes were elevated in December, so his primary care doctor tested for Hepatitis. In spite of the fact that my husband has absolutely no risk factors (we have been married for over 30 years), tests indicated that he does have Hepatitis C.  Huge diagnosis. This week, we are making decisions about liver biopsies and treatment now, or treatment later when a new drug will be available. More about that later. We have learned that the medical profession is urging anyone in their 50s or 60s to be tested (not a routine test), as there is an explosion of cases in this age group. The theory is that it had to do with medical practices in the 70s. I was tested, and am negative. I asked my husband if I could share this news on caregiving.com, and he gave me permission. We are finding that there is a stigma attached to this disease.
  • His thought processes are not what they normally are. His short-term memory and ability to think ahead are very much impaired. I am working on scheduling an evaluation for that. We had thought it was due to extreme stress with the house move and his mother’s situation (see the next paragraph), but it is not improving, and at least some of that stress has been resolved.
  • I debated about posting about all of this, because I know many of you are dealing with much larger medical issues. I hope to report, six months from now, that my husband is doing wonderfully. But, that is not the reality for us now. I’ve had six weeks of round-the-clock caregiving for him. While I have been able to draw from my experience caring for Mom, caring for a spouse is a completely new ballgame!

3) My husband’s mother, our last living parent, has moderate dementia and major behavioral issues. We have been dealing with this for several years, and she’s refused to allow anyone to help, and was still living on her own until last November. She is now, because of a major financial crisis brought on by her refusal to allow anyone to help, in an adult family home. They are very good to her there, but she is extremely unhappy and still believes she can live alone.  She had four children, but her two daughters are deceased and it is now my husband and his brother left.

4) And finally, my beautiful sister (the other half of Shandi) was diagnosed with mild cognitive impairment in January of 2012. I have tried to support her (and she continues to support me) emotionally, but it has been tough to face this diagnosis (and the symptoms) just months after we lost Mom.

I’m sorry if this is a depressing post. There have been many, many blessings this past few years as well, but I could use your support again. I am caring for my husband, his mother (although she is in an adult family home, her medical needs fall to me), and my sister (although not as much as I’d like to be). I have followed your journeys, and admire your dedication, courage and bravery. I’m so glad that I know where to turn this time around.

18 thoughts on “I Know Where to Turn for Support…

  1. Avatar of JoJo

    Shandi,

    It has been a while. Regardless of what has transpired it is great to read from you again. I’m sorry to hear of the challenging time for your husband and then your sister. Just when you think it has to be get easier, it doesn’t seem to let up does it?

    You’re not depressing, you’re honest. We wouldn’t have it any other way. Glad we’re still a place you can turn to.

  2. Avatar of The Unit Known as ShandiThe Unit Known as Shandi Post author

    Thank you, Jo. I was sorry to read about your Dad’s passing. I have appreciated your honesty, as well, and can relate to the challenge of dementia that you are facing with your Mom. It sounds like your kids are growing up and doing great things. I hope that you are doing well, too. I feel like I have one foot in aftergiving.com, and one in caregiving.com and I know that you can understand that. It is good to be back.

  3. Avatar of @gail

    Welcome back! I have only been here a short time? But I know you have returned where you will and are welcomed back with open arms! Nice to learn your story and getting to know you! :) Your story as all are interesting and helpful. Never depressing!

    Reply
  4. Avatar of DeniseDenise

    Hi–Your story is not depressing at all. It’s a story of a woman doing her best to care for her family. Because of that, it’s a story of love. :)

    I can’t help but wonder: How do you juggle the needs?

    I had a dear friend several years ago who had Hepatitis C. She was also a nun. She was infected by a previous medical treatment. I’m sorry that it’s a worry about what others will think about his diagnosis. I think that I hope he gets the treatment that he needs. I can imagine, though, that the diagnosis was a shock. I’m just curious: How did they discover his diagnosis?

    Well, I think it’s an understatement that your life has not taken the turn you’d like. It’s a lot on your shoulders. A lot to worry about. I’m sorry for that. I hope being here again will help.

    I’m so glad you’re back to blogging. Write away!! :)

    Reply
  5. Avatar of The Unit Known as ShandiThe Unit Known as Shandi Post author

    We discovered that he had Hepatitis C after his yearly physical showed that his liver enzymes were elevated and the doctor did a blood test to rule out Hep C. We were absolutely shocked. That was in early January. We’ve learned since then that many, many people between 50 and 70 years of age are being diagnosed each year, and many of them, like my husband, have no risk factors. The liver enzymes were elevated because he was taking too much Tylenol because of the back pain; they have since returned to normal. Otherwise, we would probably not have known until his liver was severely damaged. That’s why it is called the “Silent Killer”.

    Juggle the needs? My husband is my top priority. I’m also trying to put taking care of myself as a high priority. I was very wiped out after caring for my Mom, and hadn’t had dentist or routine medical tests done in years. My mother-in-law has full-time care at the adult family home, so we know that she is safe and getting food and her medication. Everything else with her will have to wait until we can get him more stable. Thank goodness that we were able to get her on Medicaid and into a very good adult family home before my husband got so much worse. I visit with my sister frequently on the phone, and visit her in person when I can. For the past month, it has been more her supporting me than the other way around! She can’t remember what exactly is wrong with my husband, but she remembers that she is worried about his health and she loves us.

    I am saying “no” more often to other requests. One of our sons just called to ask if we’d watch his male bassett hound for three days. In the past, we would have said, “Of course”! We told him that we just had too much on our plate right now. We do say “yes” to grandchildren almost always, but grandpuppies will have to wait.

  6. Avatar of PegiPegi

    OMG Shandi! I’m new to you, but no less sympathic to your endless traumas. What a brave and strong woman you are. God Bless you, and your family. I, as the others, am here for you.

  7. Avatar of G-JG-J

    Nice to see you again, although I wish you were instead writing about winning the lottery!

    You are right about knowing where to turn for support as so many of us have found. And I agree with everyone else that what you wrote is not depressing. It’s an update of your life.

    I totally understand the stigma feeling. When my husband was diagnosed with MCI at 55, and my friend’s husband with colon cancer in his 40′s, each was embarrassed by their diagnosis and worried what people would think. Moving past that worry is freeing, because as we tell our children when they are young, it really doesn’t matter what others think. FYI, in reading one of Michael J. Fox’s books, he also felt there was a stigma surrounding his Parkinson’s diagnosis at such a young age.

    I can give you more information about MCI and tell you what works for my husband, if at some point you are interested. Send me a message through the site and I’ll answer any questions and share information. How old is your sister (and I totally get it if she doesn’t want you to tell the world her age!).

  8. Avatar of The Unit Known as ShandiThe Unit Known as Shandi Post author

    Thank you for all the encouragement. I’m glad my story wasn’t depressing. In the “regular world” it might be; which is why caregiving.com is such a wonderful place to come when we are experiencing caregiving situations! So many times, people will ask me how I’m doing, and I’ll answer with “Fine” (when I’m really not) because I know there is no way they can relate to my reality, or I don’t want to be a “downer”!
    GJ- I would love to message you, but I can’t quite figure out how to do that with the new format. Could you tell me how?
    Both my husband and my mother-in-law have an initial meeting with a psychologist on Monday. It should be interesting! Ideally, it would be one at a time, not both. However, I am the driver for both of them. There will be a series of three appointments for each; initial, testing, and results. That would be six appointments if I took them separately, and my husband can’t sit for very long because of his coccyx injury without extreme pain.
    His mother has said repeatedly that she will not go to a psychologist. But, if she doesn’t, she can’t stay at the adult family home and will need to go to a dementia wing in a nursing home. Any tips on how to manage getting her to the appointment would be greatly appreciated!

  9. Avatar of ejourneysejourneys

    Hi, Shandi — I agree with the other comments; you are being real here, and are doing an extraordinary amount. My thoughts are with you and your husband on your drive and appointment tomorrow. My partner and I just had a long drive yesterday to her neurologist — she has MS that acts like traumatic brain injury, likely mixed with schizo-affective disorder. My partner didn’t want to see a psychologist for years (due in large part to anosognosia, lack of psychological insight); I finally got her to go by putting myself under the gun with DCF. Does your MIL understand that either way she will probably have to see a psychologist? Can she grasp the consequences? (((Big Hugs))) for everything that you are dealing with.

    • Avatar of The Unit Known as ShandiThe Unit Known as Shandi Post author

      Ejourneys,
      Thank you for your caring. My MIL is complicated (aren’t we all?) and it can be very difficult to know how much she is able to grasp consequences. Some of it is exaggerated, some of it legitimate, and some of it manipulation. I’m hoping that finally getting testing done will help us know how to respond appropriately to her demands.

  10. Avatar of TrishTrish

    Shandi, It’s wonderful to see you again! I’m so sorry for all of your troubles but, as I remember you, you are tough and just keep putting one foot in front of the other to get through it all. You may not know that my husband (who is also on the site and cares for his mom) is disabled due to severe back pain. After years of suffering from pain and being on more meds than I care to remember and procedures that only lasted a short while, his doctor implanted an Intrathecal Pain Pump. It has reduced his pain by half and allowed him to get off of the nastiest of the meds. Email or message me if you want more info. Take care, Shandi!

  11. Bethany

    Hello Shandi,
    It is nice to know what is going on with you so I know how better to pray. People don’t always understand the things we deal with but let us not ever live in shame! You are a loving caring woman and your family is blessed to have you in their lives. May God bless you and keep you, may His face shine upon you and lift his countenance upon you and give you peace. XOXOXOX

    Reply

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