Growing needs, growing guilt
Dear Doris,
I have cared for my spouse for over 17 years. Gradually, his needs have grown, and I feel I am pouring water into a bucket with a hole in the bottom. I know putting him in care will hasten the process. I feel guilty for even thinking about it.
When is it time to let go?
Thank you,
Karen
Dear Karen,
Seventeen years is a very long time to pour your heart and soul into caregiving. There are no easy answers to your questions, but I do hope I can provide some perspective as you move forward.
First and foremost, the word “guilt” caught my attention. During the Powerful Tools for Caregivers class series that NYSCRC hosts, we spend time helping caregivers unpack that word. First, know that feelings of guilt while caregiving are very common. Also, there is a big difference between guilt and regret. Guilt implies that you actively did something wrong or hurtful. You have been lovingly providing care for 17 years. Be gentle with yourself. What you’re feeling may in fact be “anticipatory grief” – emotional pain and mourning leading up to a loss.
You mention that you know that moving him to a higher level of care will “speed the process.” The effects of major changes can be felt on many levels, for both you and your spouse. If you decide to move him, you may be surprised to find you have room to be present with him in a more patient and loving way. Making a choice that is ultimately in your own best interest, even without input from your husband, is ok. I wonder what your husband would say if he understood the exhaustion you are feeling? Would he want to ease your burden as you have eased his?
I can’t tell you when it’s the right time for you to let go. I know that for me, it was hard to say goodbye to my husband, but I absolutely needed to initiate a move to palliative care. Many people think that palliative care and hospice are one in the same. They are not. Palliative care can be provided at any stage of a serious illness and aims to help patients live as well as possible. It can help with symptoms, pain, and side effects, and can also help patients understand treatment options. Palliative care is available to people living with ANY serious illness or long-term chronic condition.
If you have not sought out a palliative care consult, ask your primary care provider for a referral or simply look up a local organization and reach out to them. It is usually paid for under Medicare, depending on your plan. This link might be helpful: https://hpcanys.memberclicks.net/find-hospice-care-map
Also, I recommend contacting someone for your own mental health support. A therapist can help you put your feelings into perspective and think through all your options. Visit https://mhanational.org/caregiving/ for resources from Mental Health America specifically for caregivers.
In the end, all I can tell you is that taking care of your own needs will only help your husband in the long run. Seek out support, follow your heart.
Best, Doris