Living with and possibly leaving a sick spouse - a heartfelt story from a reader looking for advice

Michelle, thank you so much for sharing this story! The emotional aspects of her letter are very familiar to me and I wish I could reach out to embrace her and let her know that her feelings are very normal. Both are going through different stages of grief which are typical when people and love ones face a loss, a terminal or degenerative condition. These stages are actually the start of a healing process which may last longer with conditions such as MS.

I had to understand my own grief process when my hubby was diagnosed ALS three years ago. The sense of loss and frustration was beyond measure. I felt cheated and angry at him for getting sick. The prognosis on ALS is 3-4 years of life. With two young kids I often blamed him for not taking care of his body and for leaving all the burden of the house and his illness to me. To better understand this grief process I read a book by Dr. Elisabeth Kubler-Ross "The Five Stage of Grief" Here is a summary in a nutshell:

1. Denial and Isolation.
At first, we tend to deny the loss/terminal diagnosis has taken place, and may withdraw from our usual social contacts. This stage may last a few moments, or longer.
2. Anger.
The grieving person may then be furious at the person who inflicted the hurt (even if she's dead), or at the world, for letting it happen. He may be angry with himself for letting the event take place, even if, realistically, nothing could have stopped it.
3. Bargaining.
Now the grieving person may make bargains with God, asking, "If I do this, will you take away the loss?"
4. Depression.
The person feels numb, although anger and sadness may remain underneath.
5. Acceptance.
This is when the anger, sadness and mourning have tapered off. The person simply accepts the reality of the loss.

During grief, it is common to have many conflicting feelings. Sorrow, anger, loneliness, sadness, shame, anxiety, and guilt often accompany serious losses. Having so many strong feelings can be very stressful. But denying the feelings, and failing to work through the five stages of grief, is harder on the body and mind than going through them. When people suggest "looking on the bright side," or other ways of cutting off difficult feelings, the grieving person may feel pressured to hide or deny these emotions. Then it will take longer for healing to take place.

Not everyone experiences all stages and these are not necessarily linear, they can be experienced in not particular order at any given time. From depression back to bargaining, back to denial for example. What is important is to recognize them and find ways to cope with each stage. The hardest part for me was to learn to separate myself from the disease and for my husband to delegate the things he had always done himself, like managing the finances.

I also had plenty of those "bad" days where I wanted to just take off to never come back but I gave myself time to reflect and accept my feelings for what they were. His disease has given me the greatest opportunity to find the true purpose of my life while I am on this earth. I believe in a higher plan and without this disease and this journey, I would have not sought spiritual growth. I have learned to be more patient, empathetic, and love in a way I did not know I could. I am learning to step outside of myself and be of service to the man who I promised at the altar to be there in "sickness and in health". Those words now were not meant to be taken ligthly.

Her husband's behavior is not unusual. He needs to come to terms with his own illness and she needs to de-personalize or detach herself from his disease. There are many support groups and online chat rooms where both of you can participate and learn from other's experiences. MS is managable and there are many new treatments offering hope. These are ususally discussed on those forums.

Our journey was also challenging but we have found times to laugh and make fun of the situation. For example, since he is totally paralized we need to use a hoyer lift to transfer him to/from the bed to the wheelchair. We call this moment the Disney ride. When he needs to have a bowel movement, the kids call it daddy's poopy time. We laugh a lot and he smiles. My favorite is when we need to suction his trache and his oxygen saturations drop from 99 to 57 (pretty bad), while the lips are turning blue and he is gasping for air, the lady that helps me who is from Kenya and I work on his chest and calmly I tell him it is time for the Kenyan drums on his chest.

We are in a better place now after 3 years despite the fact his disease has continued to progress at a fast speed. But as a caregiver, spouse and mother, I have re-defined what is "normal" for us today. My hubby's journey is different than mine, but we both bare the burden of dealing with the disease in our own way. On his end, the disease has taken his identity, his physical abilities and his manhood, and for me it had robbed me of a husband who was the breadwinner, the protector and my lover. While he is beginning to see that those around him love him with unconditional love I force myself each day to see the bright side of this experience. We may have settled for a new way of living with his disease but not every day is perfect.

I think women are better equipped to be caregivers, and men do worse when they are the ones experiencing the serious illness, especially at such a young age. The feeling range from seeing themselves as failures to being a burden to their family. Nature design the programming of men to be the hunters, the protectors and they do not do well when disease hits them.

Grieving and its stresses pass more quickly with good self-care habits. It helps to have a close circle of family or friends. It also helps to eat a balanced diet, drink enough non-alcoholic fluids, get exercise and rest. I meditate and read self-improvement books. One of my favorites that has also helped greatly is Eckhart Tolle's books. http://www.eckharttolle.com/eckharttolle.

If good self-care habits are always practiced, it helps the person to deal with the pain and shock of loss until acceptance is reached. It has been 3 years for us and during this time I have learned more about who I am and what I am made of.

There are many other books I read throughout this journey but one that had a major impact on me was this one. You do not have to be of any particular faith to benefit from reading it.

"Don't Waste Your Sorrows" by Paul E. Billheimer (Author)