Category Archives: Caregiver In Chief ALS, Amyotrophic Lateral Sclerosis, is a terminal disease. As with any diagnosis of a terminal disease anticipatory grief begins at the get go. Sometimes the grief is huge, like a king size, unmade, bed with the sheets, blankets, and pillows all piled high. Sometimes the grief is hidden, like under a smoothly made bed that […]  Surviving is important, no doubt about it, without it we have no chance of thriving. Recently, my husband, Tom, that guy who has Amyotrophic Lateral Sclerosis, ALS, went through a difficult illness and surgery. ALS alone is challenging enough, add on sepsis and gallbladder surgery within days of each other after an umbilical hernia repair […]  To be a caregiver is sometimes a choice, and sometimes not a choice. Sometimes being a caregiver is a gift, and sometimes being a caregiver is a painful experience. Sometimes the caregiver experience is all of this and more: a choice, not a choice, a gift, painful, joyful, heartwarming, satisfying, frustrating, and limiting. On […]  Every now and then a good day, and some luck, comes our way. It wasn’t too hot or too sunny today. Tom ‘husbands’ his strength well. In preparation for painting en plein air this morning he physically did almost nothing the last two days. Though his muscles are now depleted of energy after the effort […]  From the day of diagnosis to May 1, 2018, this is how many days Amyotrophic Lateral Sclerosis, ALS, has been in our life. It is a lot of days. It is a long time. It feels like yesterday. It feels like time is on speed. The journey to a definitive diagnosis was a long time […] |
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