HOW TO HELP A CAREGIVER OVER THE HOLIDAYS – OR ANY OTHER TIME

Here are a few suggestions for how you can help the caregiver of a person with dementia. These are things that worked for me, but every caregiver’s experience is unique to that person, just as every person with dementia presents differently, and what helped me might not help every caregiver. (This is where Suggestion 4 comes in.)
 

1.  Listen without judging or suggesting. Caregivers don’t expect and often don’t want answers. They just need to vent.

 

1. Always consult the caregiver before visiting or bringing something. Because caregivers are with the person they’re caring for day in and day out, they will know if something is going to agitate or soothe that person.

 

1. Most caregivers find it hard or even impossible to ask for help. That doesn’t mean they don’t want or need it. However, receiving help often becomes an obligation they believe they must repay, and this adds to the mountain of responsibility they’re already hauling around. To help counteract this:

 

• Don’t offer or agree to do something then fail to show up. This can be devastating for a caregiver who has used every scrap of courage they had to ask for help. If you can’t do what you offered, find someone who can do it.

 

• Try to make it easy for the caregiver to accept your help.  I baked too much lasagna last night. Can I drop some off to you? or I need some exercise today. Can I mow your lawn?  One day a friend stopped by and asked my husband if he’d like to go for a drive. John was delighted and off they went, giving me an unexpected but very welcome few hours of freedom. And believe me, I didn’t spend those few hours mopping the floor. I went for a long, energy-restoring walk.

 

• Suggest that one day when things are better, the caregiver can pay the kindness forward by being kind to someone else. Since most of us are kind on a daily basis anyway, this is not a burden.

 

1. Be aware that while open-ended statements such as Call me if you need help, or I’m here for you, are comforting, they are generally something a caregiver can’t respond to.  What do you need the most right now?  is more helpful.

 

1. Most persons with dementia don’t know they have dementia, so they don’t see the sacrifices a caregiver is making on their behalf. But caregivers are like everyone else—they like to have their good deeds acknowledged. So, one of the best gifts you can give a caregiver is to let them know that you see what they are doing and what they are sacrificing to do it. 

 
Wow! You were so patient with your husband when he asked you four times where his glasses were that he was wearing all the time.
 
You work so hard all day looking after Aunty Jo, that I bet you hardly ever find time to look after yourself.
 
It must be so hard to walk slowly with Bob when you are usually such a speed demon.
 

1. Most caregivers want to connect with the children in their lives, and it is heartbreaking when visits must be limited or cancelled because of the distress their noise and energy cause to those with dementia. The caregiver is pulled in multiple directions, trying to pay attention to the needs of the person with dementia and the needs of the children while simultaneously carrying on a conversation with the adults accompanying the children. (See number 8). 

 
But it helps the caregiver when the family provides reassurance that they understand these challenges and how hurtful and stressful they can be, and also assures the caregiver that she will not lose a meaningful role in the family.  
 
This applies to visits by friends and groups. Caregivers often feel cut off, and it helps to let them know their place will always be there for them.
 

1. When visiting, remember there are two people with very different needs involved in this situation:

1. The person with dementia, who functions best in a calm atmosphere, familiar surroundings and routines. This person may seem happy and cognitively normal, because they are performing at their best, but visitors take a toll on them and after a while exhaustion sets in.

 

1. The caregiver, who must deal with upsets during or after the visit, ranging from the person in their care being just a little grumpier than usual, or going to bed and sleeping for a full day to hallucinating and being agitated, resulting in the caregiver doing double time trying to calm the person in their care down again.

 
Always consider the extra work a caregiver has to do to accommodate your visit, such as making up the spare bedroom for you, preparing meals and cleaning up after your visit. If possible, talk with the caregiver prior to your visit about ways to reduce this extra work. Offer to bring a ready-made meal or a sleeping bag and pillow or to help with meal prep and cleanup. 
 

1. Be aware that the following can create confusion, anxiety or simply exhaustion, for a person with dementia:

 

• A visit by multiple people that the person knows he should know but often doesn’t and so has to fake it.

 

• Children. While they often delight the person with dementia, children’s natural high energy and noise can be exhausting.  (My young granddaughter used to take a story book, sit on the couch with her grandpa and read to him. He often fell asleep and that was perfect.)

 

• Noise such as loud music or multiple conversations.

 

• Fast movements. The world for persons with dementia has slowed down. It takes longer for them to comprehend what is being said or to understand who or what they are seeing.

 

1. Sometimes, the best and only thing you can do during a visit is to be present. 

 

• Hold a hand. (unless the person with dementia is opposed to being touched). 

 

• Give a hug to both the caregiver and the person being cared for. Again, ask permission. When a caregiver is barely holding it together, a hug can be the breaking point.

 

1. Don’t exclude or talk about the person with dementia as if they aren’t present. Asking the caregiver, “How is Uncle Fred?” when Uncle Fred is sitting right there is hurtful to both. Direct the question to Uncle Fred, then give him some time to respond. Or wait until he is asleep or in another room to make your inquiry.