A friend told me shortly after Thanksgiving “Last year my husband was helping to prepare a beautiful meal with 10 guests.  This year his dementia has him close to moving into assisted living.   I can’t believe how fast his decline has been.”

I get it.  That was very similar to my experience with my dear husband Richard, who had Parkinson’s and Lewy-Body Dementia.  Holidays can be a gut punch.  Things will never be the same no matter how much you wish they would.

Here’s what I learned (the hard way)

• Grieving starts far before your loved one leaves the earth.  Be kind to yourself and your emotions.  Seek support groups if those are helpful to you.  I often said “I want my husband back, but he can’t make it.” It still makes me sad.
• Pre-position people who haven’t seen your loved one in advance.  Don’t surprize them as they come in the door.
• There is nothing to be ashamed of or embarrassed about. Dementia is an common disease just like heart disease, cancer or diabetes.  You have nothing to hide.
• Guilt is not your friend. Perfection is impossible.  Just do your best and that’s all you can do.
• Create new expectations and new habits.  For example, most people with dementia do better in the first part of the day.  So schedule activities, visitors, meals, etc. for brunch or lunch, not dinner.
• People with dementia do not do well in large crowds.  Schedule events with small groups of people.  That might mean having a few more gatherings over time, and it might mean that some people don’t get invited.  They will understand, and if they don’t, that’s a reason in itself not to invite them.
• Let people help you.  Don’t be the martyr.  If you prided yourself in making a big meal for everyone all by yourself, get over it.  Ask for help.  Be open to offers for help.  All you need to do is say thank you.
• Never talk about your loved in in the third person when they are right there.  It’s rude and they know it.
• Don’t talk down to your loved one as if they were a child.  That’s rude too and they know it.  I knew some people who talked with Richard in a louder voice.  He had dementia, but his hearing was fine.
• Have an exit strategy.  If you and/or your loved one need a break, just leave if you are at someone else’s house, or move to another part of the house if you are in your own.   There were times when Richard and I left before the food was served.  The stress for him to stay would have been too high to manage.  There were other times that we didn’t show up at all.  Our friends understood.
• As they say on the airplanes “Put your own oxygen mask on before helping others.”  Take care of yourself.  Its not selfish, its survival.

NOTE:  

You will find my book Parkinson’s: A Love Story with Dementia for Dessert on Amazon.  https://www.amazon.com/Parkinsons-Love-Story-Dementia-Dessert-ebook/dp/B07K4RLC2D/ref=sr_1_1?ie=UTF8&qid=1542135434&sr=8-1&keywords=Parkinson%27s+A+Love+Story+with+Dementia+for+Dessert&dpID=41xS3edPH0L&preST=_SY445_QL70_&dpSrc=srch  Your feedback and reviews are most welcome.

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