What would be some of the hard realities Joy’s House has identified in facing the challenges specifically associated with dementia and Alzheimer’s?
Surprisingly (or maybe not so surprisingly) the biggest challenge that stands out to me is not what the individual with the diagnosis experiences, but what the caregiver goes through. Whether their relationship is spousal, adult child and parent, siblings or another relationship, we have found that they often struggle with their new role of caregiver and decision maker. A son caregiving for his mom will find that their traditional roles haves reversed. He may struggle if he needs to assist with personal care issues. Caregiving can also be an incredibly isolating time. Often family and friends do not know how to act around this person that they have known for a long time but is now changing into someone that they may not recognize anymore. And the new reality that these caregivers are living in can be scary, intimidating and sad. They often feel that their new normal is not something that their friends and family can relate to. Additionally, the caregiver has a strong tendency to lose him or herself in the care of their loved one, often neglecting or ignoring their own needs.
How does Joy’s House provide hope in facing these challenges? (Could you share a personal story or two?)
We let families know that we support them wherever they are – if they are feeling hopeless or isolated, we let them know that they do not need to be in this alone – we are now part of their village. If they feel guilty that they cannot shoulder the burden of caregiving alone, we give them permission to accept help and grab the life preserver so that they are no longer drowning.
A few years ago, a gentleman in his 80’s came to us. He was caring for his wife of 50+ years who had been diagnosed with dementia. He was resistant to utilizing us – he took his marriage vows very seriously. In his mind, this was the “for worse” and “in sickness” part of their lives. However, she had a geriatrician that wisely wrote him a prescription for 2 days a week of adult day services for her, so that he could have a break. At their next checkup, the doctor asked how he was doing. He left the office with a new prescription for a 3rd day. I believe that because of this brilliant doctor, our caregiver was able to keep his wife at home longer, as he was prescribed orders to take care of himself.
I had a wife who was caring for her husband living with dementia. As she was nearing retirement, I encouraged her to continue to bring him to Joy’s House, as we could see the benefits of him attending – he was more social and got the stimulation and engagement that he needed to have a great quality of life. Since she was looking at having more time on her hands, we talked about things that she had always wanted to try, but always seemed to have excuses for not pursuing them. One dream of hers was massage therapy, so she signed up through a school and got her license to become a massage therapist. He is no longer with us, but because her identity was more than just caregiver for him, she now is able to live a fuller life through this second career.