I’m Widowed Yet My Husband is Still Alive – a Spouse’s Life Dealing with Huntington’s Disease

By Fredrick P. Niemann, Esq., a NJ Elder Care Attorney

Often I have listened to a client’s moving story about his or her service as primary caregiver to their sick spouse.  Each speaks with both passion and pain, describing their care giving as “the loneliest time of my life.”  For this reason, each wants to speak out and be an encouragement to others who might be on the same road.

Managing spouses whose husband and/or wife have been diagnosed with Huntington’s Disease, a long-term illness that strikes at an average age of 39 is hard.  To paraphrase their words, “My husband/wife had the diagnosis, but the disease took them away from me.  I no longer had a lover, a soul mate, someone who could really share with me.  Our days as a couple were at an end.”  During this time of increasing illness, their spouse’s were not able to hold them, kiss them, or care for them for many years of the disease.
Each shared that during this illness, they had to sacrifice their own feelings for the benefit of their spouse.  An area of greatest hurt was the abandonment of their spouse by their own extended family.  Their burden could have been lighter if family and friends had stayed more involved.  Each related that when they called their husband’s or wife’s brothers or sisters and reminded them of how important it was to them to be able to see them from time to time; many responded with, “I just can’t stand to see him/her that way.”
“I was a widow with a living spouse,” each stated with sadness.

It seems to me that we could all do a much better job in helping others carry the load of long term illness.  We need to be more aware of what family members are going through during what may well be the loneliest and most difficult time of their lives.  We need to come alongside them and provide sympathy and support.

On a more positive note, I learned of another man who has been diagnosed with Huntington’s disease and whose male buddies have rallied around him.  They have intentionally gone out of their way to work together to take this man out of the house and to sporting events with them.  They have specifically set up time to talk with his wife to make sure they understand his care needs.  They work together to make it possible for him to go on their annual fishing trip.  These men are an extraordinary example of what it means to truly be a friend.

I hope that each one of us would choose to follow this model of true friendship if someone we know and love develops a long term illness.

For further information and advice in any elder care matter, do not hesitate to contact me toll-free at 888-800-7442, or e-mail me at fniemann@hnlawfirm.com/.

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