A friend of yours is going through a new chapter in his life and you don’t know how to support him. You want to encourage him, but your words don’t seem to help. In fact, you know you haven’t been able to say the right thing and in this regard you feel inadequate and you start to distance yourself from him.
That same friend calls me for a consultation. He explains his wife recently was diagnosed with Alzheimer’s disease; but admits that he’s known things were changing for her for quite some time. At one time she put the milk in the cupboard, another she tossed the garbage in the laundry hamper, and on a few occasions she left the burner on the stove turned on. She’s trashed a few unopened pieces of mail and she’s been making some bizarre comments. Plus, she’s been getting lost when she’s out in the community.
The caller is scared. He knows enough about Alzheimer’s disease to know it is progressive and sadly he knows his wife is not going to recover. He has made the difficult decision to take early retirement so that he can look after her. This wasn’t what his hope for their shared retirement had been. He tells me that their dreams for the future have quickly turned into a living nightmare.
He is frustrated; not just with her confusion and repeated questions, or even with her clinginess to him; but with the lack of understanding from his friends, family members and acquaintances. They don’t understand! They offer platitudes – they offer unsolicited advice – but they just don’t get it! He feels alone.
How a caregiver consultant can help
As a caregiver consultant, I listened when he called. I gave him a safe space and permission to vent out his frustrations. He had so many pent up emotions. Afterall, as he sees his life partner’s skills diminishing he feels he is losing pieces of who she was. He is grieving, and he is having to take on new responsibilities as her caregiver.
He is looking for help and understanding. He needs someone to tell him how to walk through his new reality, supporting his wife while not losing himself in the role of caregiver.
Thankfully, I had a few suggestions. First and foremost, I suggested a podcast for him to listen to called “Life Does Not End With a Diagnosis of Alzheimer’s” featuring Dennis Dulniak. Dennis’s story echoed some of what I was hearing of this caller’s current situation. By listening to this podcast episode, he would hear that he’s not alone and that there is hope in and for his future. He knows his future will look different – as the present already does! I suggested he connect with a support group, and if there isn’t one readily available to meets his needs, he could find one online or consider starting one up with at least one other caregiver. I did not leave him stranded and asked him to let me know if he needed further assistance.
What about those well-meaning friends who just don’t get it?
I think if we’re honest, we all at one point or another have offered a platitude or even a cliché. We can only offer support and words of encouragement from our experience. That is, until we are taught how to support a caregiver. These lessons can be learned quickly, in the instance of becoming a caregiver ourselves, or they can be learned by listening to voices of wisdom from folks who have been caregivers.
Instead of distancing from a caregiver for fear of saying the wrong thing, I would suggest there is a better way. Caregivers often feel isolated and alone and they need their friends and supporters.
Caregiver voices of experience
Heidi Rome, as a caregiver for her son, described her observations:
“…people disappear, people you thought were good friends, even relatives. All of a sudden you don’t hear from them anymore. You’re not invited for the holiday or you’re not invited to the dinner or the whatever and it’s not that they’re evil or bad. They just often don’t know what to do or how to be.” (Heidi Rome, “You Just Have to Love Me: A Mother’s Caregiving Journey” Island Treasures podcast)
She also offered this great advice for those of us who may not be sure of how to support someone. She says we can ask:
- How can I be of service?
- What is needed in this moment?
Heidi offers more advice pertaining to caregivers: “Make sure you ask for help from the right person”! Furthermore, whether caregiving or supporting a caregiver, we can all focus on love not fear.
By learning the best approach for your caregiving friend you will help prevent them from feeling alone, abandoned and isolated. Ask your caregiver friend what he or she needs. If you’re unsure, and asking such a question is foreign to you or makes you feel awkward, you can always do what a friend of Dave Iverson’s did.
Dave Iverson spoke to me on the Island Treasures Podcast in “Telling the Full Story of Caregiving“. He told a story of Sheryl Sandberg who’s husband had died unexpectedly. She had stated that the best thing someone did for her was call her up to tell her they were bringing her a cheeseburger. All she had to do was tell them whether she’d prefer mustard or mayo on the burger. Dave says that supporting a caregiver can also be that simple. Simple gestures remind caregivers that they are not forgotten or abandoned. That’s huge for caregivers.
“Sometimes just a cheeseburger makes you feel like you’re not alone” (Dave Iverson)
Dave Iverson adds that rather than saying ‘let me know if I can help’, a friend of a caregiver can say “I’m going grocery shopping, can I pick you up a quart of milk?”
Caregiver Mentors
Caregivers are a great voice of experience. They’ve walked the walk and they know what helped them, what didn’t, and what could have helped them in their caregiving journey. That’s why I suggest that caregivers, such as the one who I spoke about earlier, get connected with a caregiver support group as soon as possible. If it’s not possible, I suggest they speak to another caregiver, either past or present, as they have the lived experience that can be invaluable as they mentor a new caregiver.
Naturally we want to support our friends as they take on the role of caregiver. We don’t want to be the one who says the wrong thing. Most importantly, we don’t want to abandon them. In order to provide that support we need to be as understanding as possible. So it may be time to ask your caregiver friend, “How can I be of service?” and “What do you need right now!” Failing that, you could always bring them a cheeseburger!
