Valentines Day is on the horizon and many of us are thinking about buying cards and gifts for our loved ones. We often hear the heartwarming stories of a spouse who is caring for their partner through dementia and they still love them as much as when they wed. But this is not how everyone gets to feel and we thought it is important to be frank and discuss the realities of the loss of love that can occur. For caregivers of people living with dementia, love can be complicated, and fraught with guilt, remorse or sadness. Valentine’s Day celebrations may be a painful reminder of something that is no longer the same.
Dementia affects everyone in a unique way. For some, they may simply become more forgetful or confused while others may experience a dramatic change to their personality. For these individuals, dementia can dramatically alter the person that existed before, to the point where they seem like a stranger that only looks like the person you fell in love with. The rigor of being a caregiver can simply change the feelings one once had. It is important to recognize that although caregivers may not be alone, they may in fact feel quite lonely.
My mother-in-law was diagnosed with dementia several years ago, and lived at home until she passed away last summer. Between her cognitive challenges and her hearing impairment, she found it difficult to follow social interactions, and as a result she would often sit in silence. As her disease progressed, she was sleeping more during the day and gradually withdrew from the world. My father-in-law was her caregiver, and although he did an amazing job of looking after her daily needs and was very patient and understanding, he was also very lonely. I often thought sadly of this slow deterioration of their connection.
In a recent blog for Home Instead, caregiver and dementia awareness advocate Karen Garner responds to a letter from a caregiver who shares that she has lost the love she once felt for her husband. His dementia has changed their relationship to where there is no conversation between them anymore and she feels ‘emotionally divorced’. She asks if this in normal. Karen’s response is below:
[Writer], please rest assured that your feelings and emotions are actually not only common, but normal. As dementia progresses, the person who is faced with caring for a loved one changing daily into someone they no longer recognize must live with, care for, love, try to communicate with and be on call 24/7 for a person who can now be a complete stranger to them.
It can be emotionally challenging and likened to someone with post traumatic stress syndrome. It is difficult to say the least to start each day not knowing what the day will bring. Who will your loved one be today? How will they respond to daily interaction and how will they have changed and progressed? At times, it can be lonely, overwhelming and exhausting and then you don’t have your loved one to confide in and lean on to help with such an overbearing task. How ironic, the one person who would have been your “go to” for such things is now the one you need support and understanding dealing with. Guilt and loneliness are also huge side effects from being the care provider for a spouse and to not like the person they have become is understandable. They might have different personalities, likes, thought processes and they just aren’t the person you have grown with and gotten to know and have expectations from through the years.
Yes it is normal, but the one thing to keep in mind is you will survive this very difficult time and must live with the choices and decisions you make now. That being said, you must also do what you need to do to survive each day as best you can. Do you have a support group? The Alzheimer’s Association in your area should be able to provide you with a group or a local church may offer one as well. If possible, talk to your clergy, a counselor or someone you trust and can be open and honest with. Exercise is also a great way to help yourself and if you are not already, try to start a routine that includes some sort of physical activity (other than laundry, dishes, yard work, etc.) Take care and stay strong.
To read more from Karen Garner https://www.helpforalzheimersfamilies.com/author/kgarner/
If you know someone that is a caregiver for a spouse with dementia, show them your love and admiration this Valentine’s Day, and every chance you get. Though they are caring for their partner they are often doing so with a very different dynamic than what they anticipated for their senior years.
If you are a caregiver in Calgary, Edmonton or Kelowna and you are struggling to cope, Proactive Seniors has the resources and expertise to help you find the support you need. Call us at (403)809-1971 or email us info@proactiveseniors.ca. We want to help.
