Patricia from North Dakota

Pat’s Story

Forty-eight years ago when I promised my husband I would “have and hold” him “in sickness and health,” I had no idea that his sickness would destroy my health. Five years ago he was diagnosed with dementia that was so limiting that someone has to watch over him 24/7. For example, he set a caramel roll on fire in the microwave when left unsupervised for five minutes. For three and a half years he was in a nursing home. In July 2013, however, because he could feed and dress himself, he was discharged as “not needing nursing home care”. His discharge saved North Dakota Medical Assistance $163 a day (Genworth 2013 Cost of Care Survey).

What North Dakota gained, I lost. When I became his sole caregiver, I had to quit my job, leaving almost no money for groceries and my own prescriptions. The stress of constantly keeping an eye on him worsened my arthritis, making it difficult for me to walk. I was bone-tired all the time. My husband is a large, heavy man and repeatedly I wrenched my back, helping him up from bed and chairs.

Yet, even though I was saving North Dakota $4,890 a month in Medical Assistance payments to a nursing home, I received almost no help from the state! By the rules of its Department of Human Services, I only qualified for seven and a half hours of respite services a week (worth $660 a month). Often, I did not have gas money to go anywhere.

Finally, everything came to a head. Since January 2014, my husband has been in and out of the hospital and nursing homes. When he was home, I never got a full night’s rest because I had to sleep on the couch so that I could be available to him. By October when he was finally placed in a nursing home, my health was in shambles. Exhausted by caregiving, I caught a very bad flu virus that made me so weak that I fell, blackening my eye. Since then because of my back pain and the weakness, I have to use an electronic cart whenever I shop.

It did not have to be this way. A little more help from North Dakota would have made such a difference in our lives. With a state surplus of $1.5 billion, North Dakota could have paid for more respite care and meaningful assistance with the activities of daily life. My husband and I are among North Dakota’s 97,863 seniors (14.5 percent of the state’s population) who have worked hard and paid taxes all their lives. Now when we need it, some of that surplus should be spent on us.

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