Someone You Know Has Dementia - What Can You Do?

Last summer, I read a book that mirrored so many situations that reflected a family dealing with a loved one’s struggle with dementia, We Are Not Ourselves by Matthew Thomas.  As the character begins his descent into another realm of reality, his friends begin to disappear - one finally stating, “We just don’t know what to do, or say, or how to deal with the situation (I am paraphrasing).  This is quite typical.  In fact, you would begin to believe, that with the research and all the knowledge that we now know about dementia people might be able to better cope or find ways to help the families with a loved one in this predicament.

Social withdrawal is one of the signs that a caregiver is experiencing stress.  Why would they withdraw?  Well, to be honest, it can be incredibly consuming to take care of, not only the household chores, but helping and working with someone who has no idea of what they or their carer is actually going through.  When people decide they’re going to be “paying their respects” and visit, those with a patient in the home could find this hopelessly stressful - now they need to make sure the house is clean, have refreshments, and “pretend” all is well - it’s just natural.  

When asked if the carer is free to do something, there may not be a right time - there may be no one or no service possible to provide a few hours of respite in order to slip away.  It can be quite difficult, and the guilt is overwhelming.  I know of a man whose wife is suffering from LBD and he tries to take her out to the movies at least twice a week, then they go for ice cream.  However, aside from her ability to be with him, he also needs to contend with her running out of the house - sometimes while he’s trying to bathe!  I’m sure there’s nothing more telling than an afflicted person trying to run down the street with an older man in a towel chasing her.  He can laugh about it, but the chuckles soon turn to tears - he’s so frustrated.  His children are trying their best to help him - and it’s been more lately, but still - the stress is tremendous.  

Many of those carers are also sleep deprived.  While they may not sleep in the same rooms, or bed, they awaken to the alarms, to the loved one performing acts (slamming doors with OCD behaviours, relieving themselves in improper places, hurting themselves in the dark, or a myriad of other activities that we can only imagine) that keep them awake, or that they need to help the patient to ensure safety and an ability to sleep, again.  

Many people state that there are many who say, “Let us know if there’s anything we can do!”  Well, that’s fine, but if the carer calls you and you put them off, what do your words mean?  How can you support them?   I’ve made a list of ideas that could actually make the carer happy that you came over!

1. Offer to help clean the house at no charge and do some shopping for them.
2. Locate a service/trusted friend to care for the patient while you go out to listen and to help them enjoy a bit of freedom.
3. Offer to care for the patient and help them have a massage as a gift - believe me, this might be the ultimate gift.
4. Come over with refreshments and listen.  Find out what they truly need/want.
5. Offer to drive to appointments both the carer and the patient.
6. Yard work?  Handyman chores?  Chances are there are projects that haven’t been addressed because of their situation.

In other words, find ways to support them that really count.  

Be a friend, not a ghost - there are enough in their lives at this point.  

Do NOT offer advice unless prompted, then be very diplomatic!

Below, I have placed the list of Rewards & Challenges from HelpGuide.com:

Caring for Someone with Alzheimer’s (or Another form of Dementia)
Challenges:	Rewards:
Overwhelming emotions as capabilities lessen	Bonds deepen through care, companionship, and service
Fatigue and exhaustion as caregiving demands increase	Problem solving and relationship skills grow through experience
Isolation and loneliness as independence disappears	New relationships form through education and support
Financial and work complications as costs rise and resources are challenged	Unexpected rewards develop through compassion and acceptance

I have also copied, from the same site, the 10 Signs of Caregiver Stress from the Alzheimer’s Association:

10 Signs of Caregiver Stress

If you experience any of these signs of stress on a regular basis, make time to talk to your doctor.

1. Denial about the disease and its effect on the person who has been diagnosed. "I know Mom is going to get better."

2. Anger at the person with Alzheimer's, anger that no cure exists, or anger that people don't understand what's happening. "If he asks me that one more time I'll scream!"

3. Social withdrawal from friends and activities that once brought pleasure. "I don't care about getting together with the neighbors anymore."

4. Anxiety about the future. "What happens when he needs more care than I can provide?"

5. Depression that begins to break your spirit and affects your ability to cope. "I don't care anymore."

6. Exhaustion that makes it nearly impossible to complete necessary daily tasks. "I'm too tired for this."

7. Sleeplessness caused by a never-ending list of concerns. "What if she wanders out of the house or falls and hurts herself?"

8. Irritability that leads to moodiness and triggers negative responses and actions. "Leave me alone!"

9. Lack of concentration that makes it difficult to perform familiar tasks. "I was so busy, I forgot we had an appointment."

10. Health problems that begin to take a mental and physical toll. "I can't remember the last time I felt good."

Source: Alzheimer's Association

So, please be patient with these people.  You might find yourself feeling uncomfortable, but you also might earn some wings if you reach out and find out how you might impact them in a positive way - that they need, rather than what you believe they need.

Listen - that’s the key.