My husband and I moved to Arizona in 2016 so I could take a new job as a nurse educator and be closer to his mother. She was not aging well, and his brother, who she lived with, was not coping with her health issues.<\/p>\n\n\n\n
In the beginning, she would come for extended stays and could take care of herself, but then she was hospitalized with pneumonia. Since my brother-in-law worked long hours, we felt it would be better if she stayed with us while she recovered and got back on her feet. What was supposed to be a two-week stay turned into a permanent living arrangement because of COVID.<\/p>\n\n\n\n
Once she was living with us, it became clear she needed a lot of assistance. She had been mismanaging her medications, taking them and not taking them, which created some significant issues, since many of the medications needed to be taken on a regular schedule. She thought it would be fine if she took all her medications at once when she missed doses. Once we understood what she was doing, we took over her medications.<\/p>\n\n\n\n
After about six months, I began to worry that she may be developing dementia. She was having issues with remembering things and had excessive daytime sleepiness. I scheduled an appointment with a neurologist to evaluate her. We determined that she had severe sleep apnea; she would stop breathing an average of 30 times an hour. She was prescribed a bi-pap machine, and it made a real difference in her cognition and daytime sleepiness.<\/p>\n\n\n\n
For a while, things were okay, but then she began to have significant respiratory issues and several hospitalizations. It was at this point that she was diagnosed with end-stage COPD. Initially, she was treated with outpatient care, but then the treatments stopped working. She required 24-hour oxygen and still had significant respiratory distress. She was evaluated and admitted to hospice.<\/p>\n\n\n\n
During all of this time, full-time caregiving took a toll on my husband and our marriage. We couldn\u2019t leave her home alone, so we had to hire someone to be with her. She began to decline cognitively, which resulted in her having hallucinations, being combative, and sometimes being paranoid.<\/p>\n\n\n\n
The constant worry and day-to-day management of her care left little energy for any intimacy. When we did have time, it was usually when we could get away for a short vacation, but then it felt like we were on a time clock. Yes, we had sex, but it was less intimate than either of us wanted and needed. We were both exhausted.<\/p>\n\n\n\n
For three years we cared for her, and over those three years I can count on one hand the number of times we actually had intimate sex. Every part of our lives was taken up by being caregivers.<\/p>\n\n\n\n
She passed away in 2024. For months, she had been bedridden, not really eating or drinking, and she spoke very little. The day she passed, she went very quickly and peacefully. My husband and I were with her when she took her last breath. The hospice nurse who came to pronounce her was a former student; she stayed with us for a bit and then left for her next home visit.<\/p>\n\n\n\n
We contacted the funeral home and waited in the living room. The house was eerily quiet. Her oxygen concentrator was off, and the TV in her room, which was on 24\/7, was off. It was just us and the quiet.<\/p>\n\n\n\n
It has taken over a year for things to become the new normal. We no longer feel rushed to be back home to relieve that sitter. We weren\u2019t being awakened in the night by her calling out. There was no more medication regimen. We could come and go, and it was now us.<\/p>\n\n\n\n
It took over a year for us to be able to become intimate again. Grief just doesn\u2019t stop after a day or a month. It has taken time for us to feel comfortable being alone together and not worrying. For the first time in years, we were able to take a vacation without worrying about getting back because of the cost of respite care. It was the first time we felt we could have room to breathe and room to be close.<\/p>\n\n\n\n
Most people don\u2019t understand what being a caregiver means and the challenges it can create. Caregivers sacrifice large pieces of their own lives. The impact is why so many caregivers develop compassion fatigue.<\/p>\n\n\n\n
I am grateful that we were able to come back together and find our intimacy.<\/p>\n","protected":false},"excerpt":{"rendered":"
My husband and I moved to Arizona in 2016 so I could take a new job as a nurse educator and be closer to his mother. She was not aging well, and his brother, who she lived with, was not coping with her health issues. In the beginning, she would come for extended stays and […]<\/p>\n","protected":false},"author":1,"featured_media":0,"comment_status":"open","ping_status":"open","sticky":false,"template":"","format":"standard","meta":{"footnotes":""},"categories":[7,1],"tags":[],"class_list":["post-127","post","type-post","status-publish","format-standard","hentry","category-blog-post","category-uncategorized"],"_links":{"self":[{"href":"https:\/\/suemcwilliams.com\/index.php?rest_route=\/wp\/v2\/posts\/127","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/suemcwilliams.com\/index.php?rest_route=\/wp\/v2\/posts"}],"about":[{"href":"https:\/\/suemcwilliams.com\/index.php?rest_route=\/wp\/v2\/types\/post"}],"author":[{"embeddable":true,"href":"https:\/\/suemcwilliams.com\/index.php?rest_route=\/wp\/v2\/users\/1"}],"replies":[{"embeddable":true,"href":"https:\/\/suemcwilliams.com\/index.php?rest_route=%2Fwp%2Fv2%2Fcomments&post=127"}],"version-history":[{"count":1,"href":"https:\/\/suemcwilliams.com\/index.php?rest_route=\/wp\/v2\/posts\/127\/revisions"}],"predecessor-version":[{"id":128,"href":"https:\/\/suemcwilliams.com\/index.php?rest_route=\/wp\/v2\/posts\/127\/revisions\/128"}],"wp:attachment":[{"href":"https:\/\/suemcwilliams.com\/index.php?rest_route=%2Fwp%2Fv2%2Fmedia&parent=127"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/suemcwilliams.com\/index.php?rest_route=%2Fwp%2Fv2%2Fcategories&post=127"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/suemcwilliams.com\/index.php?rest_route=%2Fwp%2Fv2%2Ftags&post=127"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}