Romina Oliverio advises one caregiver whose husband’s outbursts are distressing a 17- and 7-year-old, not to mention the caregiver herself.
Question: My husband was diagnosed two and half years ago. He was immediately retired and our entire lives changed. I have two boys at home, 7 & 17. We have adult children and 6 grandkids. Our teenager is often the focus of my husband’s rants and over the summer could speak viciously to our 7-yr-old. Husband has a tendency to be more and more immature, and this is hard on us all. Any strategies for children when it’s a parent in their own home?
A. My heart goes out to you and your family. As adults, we rationalize the life-altering journey that is Alzheimer’s. But, unjust as it may seem, your children have been put into a position of having to do some fast growing up. This isn’t to say that children aren’t capable of handling changing family dynamics.
First, let’s address your husband’s behaviour.
Dealing with your husband
Your husband is undergoing an enormous adjustment period. Within the span of almost three years, the life he knew has been turned on its head. Feelings of worthlessness, uselessness and a crushing loss of independence are normal for anyone whose routine has been drastically altered. If your husband is experiencing symptoms of depression or his anger increases, I would suggest to consult your doctor immediately.
Keeping his body and mind busy may help to take away some of the stress he is feeling. Perhaps there are Alzheimer’s day programs in your area or there may be an early-stage Alzheimer’s support group he can attend. If he enjoyed certain hobbies, try to incorporate them in his daily routine now or find other activities he may enjoy.
Dealing with your children
Children are resilient and when faced with trying circumstances, they are often wiser beyond their years. Nonetheless, children tend to internalize much of what they see. Due to their limited life experience, they may not have sufficient coping mechanisms. Here’s how you can help.
Education is key.
Children need to understand that whatever may be happening, it is NOT their fault. It’s common for a child to blame themselves for their parent’s behaviour or to distance themselves from the primary caregiver so as to not become what they perceive as an “added burden.” In an age-appropriate manner, explain to them that whenever their dad rants, it is not out of a lack of affection, it is the Alzheimer’s disease speaking. Dispel any myths they may be holding on to (e.g. Alzheimer’s is a part of regular aging) and tackle the hard questions in frank terms (e.g. ‘There is no cure but there is a lot we can do to make dad feel better”).
As the disease progresses, keep your children in the loop about what they can expect. Children have an exceptional ability to detect when the truth is being hidden.
Dealing with your children’s wellbeing
The onset of Alzheimer’s, without any real preparation, can leave children filled with questions and worry. They may bury these concerns in order to spare you. Invite them to talk openly and honestly. If they’re not comfortable enough to verbalize their feelings, suggest journaling. Ask a trusted teacher or other family member to check in on them regularly, or arrange for a visit to a counsellor or social worker.
– The situation at home may impact their school performance.
Speak to your children’s teachers and principal and explain what is happening. They may also be able to flag behaviours (lack of motivation, tiredness, apathy) that should be addressed.
Keep the family dynamic as normal as possible
It’s important to keep things flowing as normal as possible. Your children are not only dealing with their dad’s disease, they’re also dealing with growing up. Make time to mark the special occasions in your kids’ lives, such as celebrating a good grade; encourage them to remain active with school activities and other hobbies.
– Spend time with your children alone.
If one of your adult children or a trusted friend is able to look after your husband for a few hours, take your children out for an afternoon with a fun activity. It’s common for younger children, especially, to feel afraid they may be losing both parents. The bond between you and your children needs to be stronger than ever.
– Looking after someone can take a toll.
Make sure everyone in the family stays healthy, eats well, and gets enough sleep. If your children are showing signs of exhaustion or depression, speak to your doctor immediately. This applies to you. Not only are you the care partner of someone with Alzheimer’s but you now have the job of two parents.
Activities and involvement
Make the most of the ‘good days’ and involve the entire family. If your husband gets to a calmer place, or you even notice he is quieter at certain times of the day, try these activities.
Involve your children.
Shielding them will only make them feel scared. They may be unsure of how to help. Think of small tasks they can: Ask your older son to go for a short walk with his dad, or encourage your youngest to help your husband fold laundry or make the bed.
Encourage bonding time.
Plan activities that can be done together with your husband, such as reading or looking at old photos, gardening, doing small crafts, or listening to favourite music together (an excellent way to decrease anxiety and agitation).
It can be exceptionally painful to be on the receiving end of insults – even if your children understand that the vicious comments are provoked by brain damage. These moments will cloud happier times. But you can soothe distressed feelings by keeping old memories alive. Sit down with your children and reminisce about the “good old days.” Look at photo albums together, recall funny family stories, ask your children about their favourite vacation, make a memory box together.
Nothing you’re going through is simple. Please hang in there. You’ll soon find a process that works for you, your children and your husband.
Keeping your family in my thoughts. All my best.
About the author
Medical disclaimer: The advice given in this column is for informational purposes only. The content is not intended to be a substitute for professional medical advice, diagnosis, or treatment.