Partner to a Caregiver

redlily · January 22

I am new here and looking for support for myself. I am caregiving my partner who is and has been caring for his wife, diagnosed with FTD in 2016. I have been with him for over 4 years. I would never have chosen this path for myself, except I have known him for 16 years and know the beautiful soul he is. I worked with this man for 8 years. I was able to learn and witness his character, integrity, deep compassion for the people he worked with and supervised and the love and commitment for his family. We became friends and supported each other through some of life’s most difficult moments. I was one of the first people he shared his wife’s diagnosis with. He didn’t want our whole workplace to know in the beginning and our unit supported and worried about him for years. It surprised us both when at the end of 2021, he chose to open himself up (strongly encouraged by his oldest son) and we began to share his journey together. His children, extended family and friends have welcomed me with open arms and have been encouraging and supportive of our relationship. We have even travelled with his wife’s sister and her husband. In that aspect, I am very lucky and grateful.

I have been seeking to find someone in the same situation (caring for the caregiver). People are empathetic but until you have actually lived this, you just don’t know. Is there anyone out there that understands just how hard it is to honour and hold space for her, yet having moments of jealously and resentment that I have to share every day with her.

I should add that he cared for her in their home until he just couldn’t manage anymore. He and the children living in the home made the very difficult decision to place her into longterm care in 2020. He goes every day to feed her supper, after working a full day. He also attends to feed her lunch on the weekend.

Jgirl57 · January 22

Welcome; I can’t offer any advice but I do want you to know there is no judgement here. This is a very difficult disease for caregivers . Each caregiver has to do what works for them and their loved ones.

redlily · January 22

https://alzconnected.org/discussion/comment/264165#Comment_264165

Thank you, Jgirl57. I have watched this disease devastate so many.

JDancer · January 24

I just want to say, bless you for bringing some light to the very dark life of caregiving. Your partner is lucky to have you.

debriesea · January 25

A while back a caregiver posted about having a supportive partner that shared in caring for his wife. I recall it was a difficult decision for him to make but it supplied him with the much needed intimacy that we caregivers loose. I don’t remember if he brought up any issues that his partner had which you are feeling.
l know you are filling an empty space for him as he grieves the slow loss of his wife. This is not an easy journey for him. You are only human to feel some jealousy and resentment. Our hearts are not designed to share in this way. It takes a special kind of love to be in this situation, even better to have the support from his loved ones.
Perhaps someone else has more insight.

redlily · January 26

https://alzconnected.org/discussion/comment/264411#Comment_264411

Thank you, debriesea. It should be made clear, that my partner's wife is in a long-term care facility, not at home.

As I mentioned in my first post, I have known my partner long before we began a romantic relationship, and I have ALWAYS said he is the best human being I know (he hates it when I say that😏) He has shown a level of commitment and compassion, that I am sure not every husband could sustain. Seriously?! How lucky is she? How lucky am I to be his partner?! I entered this relationship wanted to lighten his burden in any way I could. It has been said "you KNEW what you were signing up for", which is like telling a brand-new Mom struggling in her new role…"Well…this is what you wanted!" There is no manual, map or guide to navigate with. No one can know the depths of despair, grief, exhaustion and loneliness caregivers and their families endure and most certainly didn't know at the beginning of their journey. I truly am honoured to be supporting this man and his family through this journey. But as you said, I am human. I have yet to find anyone that is also travelling a similiar path. There are support groups for caregivers, and I guess I was hopeful to find a kindred soul here.

I appreciate hearing from you.