This week marked one year since my first symptom of slurred speech started. Seeing all the Facebook Years in Review makes me think of what mine would look like. So much has changed in a year! A lot of it has already been covered in this blog. And through it all, Stan has been my biggest support.
We read an article in Neurology Now (Aug./Sept. 2016) about spousal caregivers. On the cover it lists some of the articles. It says, “The Caregiver Spouse: Save Your Marriage and Your Health.” So of course that caught Stan’s eye so he brought the magazine home . The article is called Tough Love (a term usually used by parents of teenagers). The subtitle says, “Succeeding as a spousal caregiver means knowing when to ask for help, finding time for yourself, and making peace with your partner.” All three of these tasks can be hard.
Health challenges for a married person can cause disruptions to the relationship with the spouse, including shifts and losses in areas such as intimacy, responsibility, and communication. Diana Denholm, PhD, a psychologist in West Palm Beach, Florida, and author of The Caregiving Wife’s Handbook (2012) is quoted as saying, “I always recommend that couples talk about the changing relationship openly and honestly and as soon after it starts changing as possible.” It’s important to review the list of household responsibilities and divvy them up based on the changed circumstances, and decide whether to hire someone to handle a task you or your spouse once handled.
While Stan and I haven’t always had the best communication, we are trying, even with my communication challenges. I recently saw the NBC Dateline story about the movie Gleason and Steve Gleason and his wife Michel and how they are living with Steve’s ALS while parenting. Michel said the hardest time for their marriage was when he couldn’t talk anymore. For us this has come very early in the progression of my ALS. When asked about how she does it (spousal caregiving), Michel said, “It’s our life. It’s what we do.” I watched the episode of Dateline in the car with Stan driving. He patted my leg when he heard her say this, which I found to be very supportive.
The article continued with: Spousal caregivers should resist taking on everything and shouldn’t neglect self care and should consider how the spouse with the health challenge can still contribute. We had a family meeting on this early on and I am still doing some household duties. At the meeting my son asked , “You want to do these as long as you can, right?” And I nodded – yes that was right.
It is also important for spouses who become caregivers to avoid isolation. Dr. Denholm recommends talking about your challenges with people you trust so the anger doesn’t build up and erupt. There are online support groups dedicated to spousal caregivers: The Well Spouse Association – Who Cares for the Caregivers (wellspouse.org) provides a list of telephone support groups on its website. Connecting with caregivers in the same situation can offer much-needed emotional support. Talking to a therapist is also a good way to share your difficulties and get help managing emotions.
The next point in the article is to cultivate healthy communication, which is important in any marriage but is very crucial for couples in which one is taking care of the other. They may need to discuss delicate or difficult topics such as toileting or the changing nature of their intimacy. Ignoring problems or avoiding conversations can lead to anger and resentment. Avoid unloading your frustrations and anger on your spouse. Then pick a specific time to discuss thorny issues and know beforehand what you want to discuss. Also important: Use “I” statements and not “why” statements. As an example, instead of saying “why don’t you hold my hand anymore?” say “I feel closer to you when we hold hands”. It’s important to learn to speak your partner’s language according to Dr. Denholm. Generally men respond better when asked for their thoughts rather than their feelings. Wow, that’s one that could also help me with my teenage son.
Intimacy can be another problem. Some spouses may want to maintain the same level of intimacy they had before while for other couples the sexual part of their marriage may be over or on hold. In any case it’s important to talk about sex and intimacy so that each partner understands the other’s needs, and to manage expectations.Touch can become a really important way to connect.
It is normal to feel sad when watching your spouse’s health decline and your relationship change. Caregiving has its ups and downs, but if emptiness and despair take over you may be experiencing depression.
Signs of depression include a change in eating habits or sleep patterns, feeling tired, a loss of interest in people or activities, agitation, anger, and thoughts of death or suicide, according to the Family Caregiver Alliance (caregiver.org). These are all signals to take action by talking to your doctor or a friend or therapist.
It is also very important that caregivers schedule their own personal time. Without breaks, a caregiver may fall apart emotionally and physically. After a break, a caregiver may be rejuvenated and be better at caregiving. It is also important to ask for help to ease the burden of caregiving. There are groups that volunteer a few hours a week to give in-home caregivers a break. So unless you already have an extensive network of helpers, seek out care. Family Caregiver Alliance lists family care resources by state including respite programs. When Andy was a special needs preemie baby we were able to use RAVE foundation here in Reno which provides 2 hours a week of respite childcare for special needs kids. That allowed me to go to the gym and work out which relieved my stress greatly.
To help ease the burden of caregiving, figure out what resources are available from family, friends, and the community. It can be hard for self reliant people to ask for help. We have a list of friends who have offered to help. So far, we have only accepted offers from people who stepped up without us asking. I am sure that after we return from Holiday travels we will need to ask friends to bring a meal for Stan and Andy once a month or so. Menu planning and grocery shopping was my job before my diagnosis and it has been challenging for Stan to take over (understandably with his own health issues and spousal care issues). Thank you to those who have already stepped up – you know who you are and we can’t thank you enough!
Please consider a donation to the ALS Therapy Development Institute on my fundraising page. ALS Therapy Development Institute and its scientists actively discover and develop treatments for ALS. It is the world’s first and largest nonprofit biotech focused 100 percent on ALS research. Led by people with ALS and drug development experts, the Institute understands the urgent need to slow and stop this disease.
Right now, AT-1501, the most effective treatment for ALS that the Institute has ever tested, is sitting in a lab freezer (Freezer 4 which I saw on my tour of the lab in October) because ALS TDI does not have the funds needed to advance it. $11 million is needed to push it into phase one. ALS is not an incurable disease. It is an underfunded one.