I Know Where to Turn for Support...


I Know Where to Turn for Support...

aking 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.

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The Unit Known as Shandi

Welcome, Bethany! I'm so glad you found us.


Hi, Shandi -- I agree with the other comments_mysql; 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.

The Unit Known as Shandi

Husband's spine doctor appointment is tomorrow, and a long drive ahead.

The Unit Known as Shandi

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\"!\r\n 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? \r\n 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. \r\n 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!


BTW, Such a serene image you posted with your blog.

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