There are many stages of this dementia journey and different models outlining the progression in “phases” from three (mild, moderate, severe) to four (early, middle, late, and death) and seven (see below).
Each of these are geared to the patient with the Alzheimer’s diagnosis.
Last year, I came up with my own “FIVE PHASES” of this Alzheimer journey, but geared to the caregiver, me. Here it is.
- Phase ONE: I know something is wrong, even though the verbal tests are negative for dementia. We’ve ruled out the physical tests: a PET scan needs healthier kidneys and a spinal tap seems unnecessarily intrusive, particularly when he’s so confident he is “fine.” I am in limbo, making this the hardest job I’ve ever had.
- Phase TWO: He finally gets an MCI diagnosis, his first, though his diagnosing PCP minimizes this. Still, I feel validated, relieved, and ready. Educating myself is critical, as is gathering a support team; I’m also dealing with my wildly fluctuating emotions and starting to identify the challenges I’ll be facing. I’ve been told I must learn to lie. With my denial often showing up disguised as hope, and the very idea of lying to the man I’ve been nothing but honest with for over 30 years, this quickly becomes the hardest phase yet.
- Phase THREE: (Where we are today.) He has the Alzheimer’s diagnosis and it’s time to answer the many questions I’ve collected: How do I make sure we are not wiped out financially? When does he stop driving (and how! He thinks there’s nothing wrong with him)? When do I take over his medications (and how)? How do I learn to lie? What kind of marriage is this? What will our sex life wind up like? How do I keep his brain stimulated? Is he getting the best possible care? New challenges greet me regularly and I address each one, making this phase the hardest so far.
- Phase FOUR begins when I hire others to help care for him physically. Or place him in a home. I expect this will be the hardest phase for me, at the time.
- Phase FIVE will begin with his death. I have no idea how this phase will go for me, but a phase in this lengthy journey it will be, and the hardest it will be, undoubtedly.
You get the idea. There’s not going to be an “easy phase.”
I know how important self-care is. Let’s start to explore that next time: Finding Ways to Feel Gratitude and Joy in the Midst of This Unexpected Journey.
Janet Morrison
Oh, Janet. Now I know the change in your life that you referred to recently. I am so sorry. I truly cannot imagine what it is like to live with a loved one who has been diagnosed with Alzheimer’s Disease. My sister-in-law has Alzheimer’s and now she and my brother are both in the memory care unit in a retirement facility 300 miles from me. I cannot imagine the stress, worry, and conflicted emotions you have and will continue to experience. Know that you and your husband will be in my prayers.
Janet Givens
Thank you Janet. This has been a challenge, a journey I’ve often said that “we never packed for.” One big thing I’ve learned is that there are more of us out there than I ever before realized. I don’t know if the testing is better, the memory meds make the diagnosis easier to seek or if there really is an increase in actual numbers. All I know is that every time this subject come up, I hear of yet another person who has it. Fortunately, the Alzheimer’s Association is keeping track of all the research going on. Here’s hoping the funding cuts do not diminish what they are learning.
Janet Givens recently posted…Educating Myself: My Five Phases