The Fickle Phases of Family Caregiving

Let’s play Caregiver’s Clues. If you are family caregiver, take a look at these phases and see which one you are in right now. If you aren’t a family caregiver, and know one or more who are caring for a loved one, see if you can figure out which phase they are in. Identifying these phases has been helpful for me to adjust my workshop, coaching and upcoming online program materials so that I can be more effective in supporting you through your caregiving time.

Not every caregiver will go through each phase. Family caregiving is full of unexpected twists and turns, both positive and negative. It is normal for a family to jump from phase one to three or four in a short amount of time. It is also normal for a family to stay in phase one for an extended period of time. The important thing is to know where you are in relationship to how your life is going as you care for a loved one with a life changing medical diagnosis.

Phase 1 – New to Caregiving

In this phase, you are brand new to caring and supporting a loved one. Or you are a past caregiver and now have a different loved one recently diagnosed with a life changing medical condition. Some things you might notice are:

  1. You have an unquenchable thirst to learn everything about the life changing diagnosis.
  2. At times you feel absolutely paralyzed with fear and worry.
  3. You wonder how you/your family will be able to handle this.
  4. You have thoughts about your own mortality.
  5. As you get your answers from the medical professionals and a treatment plan is place, you start to feel some relief and may feel hopeful that life will be somewhat “normal” again.
  6. You love your family member and are proud and willing to do whatever it takes to care for them.
  7. Eventually you and your family have adjusted to this “new normal” and this new part of your life becomes one of routine.

Phase 2 – The Bump in the Road

In the phase you are faced with dealing with your loved one experiencing additional medical crises, worsening health conditions or one or more new health conditions. You may experience some of the fear, worry and paralyzing thoughts previously experienced in Phase One. You may also experience:

  1. Ongoing disruption in your regular routine at home, work, with extended family and in your community relationships.
  2. You are starting to turn down social invitations and limit visits with family and friends.
  3. You start to feel more weary, occasionally overwhelmed, and don’t seem to get as much accomplished as you used to.
  4. As things settle down, you have an unmistakable feeling of “waiting for  the other shoe to drop.”
  5. You tell yourself, and everyone else, that you are managing, and don’t need any help.
  6. You jump between fearing the worst, and wondering how long the “better times” will last.
  7. Eventually you and your family make adjustments to this “new normal” and this new part of your life becomes one of routine, though there seems to be no real routine anymore.
  8. You are starting to resign yourself to this life, because it is your obligation to care for your loved on.

Phase 3 – The Other Shoe Drops

It might be weeks, months or even years before you enter this phase. In this phase your loved has had another significant and worsening change in their health condition and it’s had a significant impact on you, your family and your normal schedule. You may experience:

  1. Feeling exhausted and wondering when was the last time you had a restful, full night’s sleep.
  1. You may experience any of the things experienced in Phase 1 and 2.
  2. Fear, worry and guilt start to become your predominant thoughts.
  3. You start to wonder if you have what it takes to get through this.
  4. If you are working, you may be considering asking for some flexibility in your schedule, or in decreasing your hours at work.
  5. You continually push down your feelings, and it feels as hard to do this as it does to keep a beach ball under water.
  6. You start to feel like you might be cracking under the pressure – the beach ball of emotions erupt – and sometimes you scare yourself when they do.
  7. You start to have daydreams of a different life.
  8. Your pride, love, and commitment to caring for your loved one has moved through the obligation phase, and into feeling like there are too many demands on your time, energy, and life.

Phase 4 – No Turning Back

This phase is characterized by transition and knowing that your loved one will not be getting better. There may still be some good days, but the long term outlook is that the good days will eventually decrease as the health of your loved one continues to decline. This may happen rapidly, or may happen over weeks, months or years. This phase is common for families impacted by progressive diseases like MS, Parkinson’s, Alzheimer’s, Dementia, cancer, ALS, etc. In this phase you may experience:

  1. Overwhelming thoughts of fear, worry and guilt for thinking about life after caregiving – after your loved one has passed away.
  2. Sometimes wishing it would all just end – followed by immense feelings of guilt for even thinking that thought.
  3. You may feel a lot of guilt for getting extra help for your loved one, from additional home care hours to considering a long term care placement.
  4. Feelings of anticipatory loss and grief, especially when the medical condition includes cognitive impairment and memory loss.
  5. In some cases, there is a pendulum that swings from when things are better than ever expected to sudden medical crises where you wonder if this will be the last medical crises your loved one will face.
  6. You feel completely overwhelmed and your major focus is on just making through the day.
  7. You continue to believe you are managing fine, and when asked, tell others you are doing fine.
  8. Your loved one may want to talk about what they want at the end of their life. You might be ready to do this. Many caregivers feel that they have “given up” if they have this conversation with their loved one.

Phase 5 – After Caregiving

This phase can take 2 forms. You might go through this phase after a long, rehabilitating treatment program that your loved one has been going through, and now they are back to a full life, no longer requiring intense care from you. This also is the phase you will go through after your caregiving ends because of the death of your loved one. You may experience:

  1. Loss of connection with colleagues, extended family and some friends.
  2. Concentration and memory problems
  3. Feeling quite exhausted. This is a different type of exhaustion than felt in the other phases and is restorative and healing.
  4. Disconnected from the world in general. You may not have been aware of major world events, perhaps even family events, while you were in the highest intensity of caregiving.
  5. You may feel a great deal of relief that your loved one is no longer suffering, and then you feel guilty for thinking that way.
  6. Your grief will take many forms. It is unique as each person is unique.
  7. You may feel like you are just going through the motions of every day life.

 

These lists are not complete or exhaustive. They describe what I have experienced as a caregiver and what I have seen when working with other caregivers. I believe these are important phases of the caregiving journey, and it helps you to know what to expect when your family experiences any of these phases.

In upcoming blogs I will share important warning signs of each phase that suggest you would benefit from outside help, and some key steps you take to avoid caregiver burnout. It doesn’t help the person you are caring for if you become a patient, too.  You can avoid burnout and I will support you. Keep an eye out for the announcement of the soon to be released online program coming up in the next couple of weeks.

Please let me know what phase you think you are in by leaving a comment below. Please leave a comment if you disagree with what I say – I am open to learning new things and changing my mind!

May you find peace, hope, and joy in every day.

Lorna

3 Comments

  1. Phase 4
    Palliative care has been requesting by me for my husband. Waiting on doctor’s response.

    I work full time, and my employer refuses to work worth me to change my hours. Currently 8:30-5.

    No family within 300 miles.

    It’s just the3 pig us: myself, hubby, and daughter. (Daughter is Bi-polar)

    Husband had Parkinson’s Disease/LBD

    I cry at least every day on the ride home from work. (20 miles One way)

    I’m continually drained.

    • Thank you for your comment. I apologize for being late with it. I am sorry to hear of your husband’s diagnosis – and your daughter’s illness. You have a very full plate and it is very unfortunate your employer isn’t helpful. Congratulations on taking the steps to request the move to the palliative care program. Most often there are more resources available once they are in the program. I hope you don’t mind my asking – is your husband living with you? Have you had a chance to ask for any other help?

      If you are interested, I have a free PDF copy of my book available (if you don’t have it already) http://www.thecaregiverslighthouse.com/wjtafreepdfbook

      May you find peace, hope, and joy in every day.

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