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“I feel so alone and even though I attend a support group, the feelings of loss, anger and love make my head spin.”
“It is hard for me to articulate my feelings of confusion and it seems like a betrayal to the man I have loved so deeply for over 50 years.”
Being a spouse, wife or husband of someone with a dementia is a trial, not just a journey. The well spouse often feels guilty for their honest feelings – this journey of love and care needs a “professional” guide. It would be a gift to both the well spouse and the person in need of care to consult with a Professional Geriatric Care Manager at least once a month or every 6 weeks.
The well spouse needs to be affirmed, re-directed at times and given permission for self-care. Because, without “self-care”, well spouses can end up in the cardiac or stroke unit of their local hospital and then who cares for that “beloved” husband or wife?
The dementia journey can be 10-20 years. It can be a time of love and moments of joy if the well spouse can find balance and ways in which to affirm themselves. This takes some coaching and guidance often by a professional very aware of dementia behaviors and the interventions to use for each situation.
It also means that well spouses have to share the care with other family members (and ask for specific help), community programs and caregivers trained in dementia care (often these come from agencies with excellent training programs).
All of our caregivers are given training and are exposed to the family journey of “dementia” care. Be sure when you do hire an agency they can tell you they have provided this training and they provide 24/7 assistance with any behavioral issue.
Be a real loving spouse – take care of yourself and check in with a professional to be sure you don’t get off track!