My Parent has Moved in! OMG Now What? Dementia 101

Take a deep breath.  You can do this.

First each person is an individual and Dementia can be caused by injury or disease.  These suggestions are designed to be general information, a good general starting place only.

If it is brought on by disease many things will change over the course of time.  What you can expect from the Person With Dementia (PWD) today, will not necessarily be what you can expect from them next week.  If it is caused by Alzheimer’s the stages are fairly predictable so learn what to expect at each stage.  If dementia  is caused by injury in may steadily get better not worse.

Mostly confusion in the beginning will be PWD main problem.  This will cause them to become irritable and depressed.  So easing their confusion will translate to a happier more pleasant living arrangement.  Spouse will often need to be reminded of this simple concept.

Conversation will need to change.

1.  Speak in short sentences.  Translating normal conversation speed down to PWD brain speed takes effort.   Complex sentences will vary in length so you will need to determine what seems easily understood and adjust from there.

2.  Pause between sentences.

3.  Don’t ask open ended questions.   Such as what would you like to eat?   Instead limit your questions to choices.  Mom do you want hamburger or Chinese for dinner?

4.  Learn Mom’s new buttons.  What kinds of things cause the person distress and stay away from those topics.  If they are things the PWD must do we will discuss how best to put it in the best way to keep anger or distress at a minimum.

5.  Don’t cause them grief if possible.  If people who have died are brought up as if they are still around, consider allowing the PWD to NOT be brought up to date about the loss.  If they will only forget tomorrow is it worth the pain of learning of their death all over again, and again.

6.  Stay in their moment.  If you are being confused with someone else, perhaps it is just as well to take on that role,  if it keeps harmony in the home.

7.  Keep distractions to a minimum.   Turn the radio / TV sound off while talking.

8.  Outings are a great idea.  Going to the park, out to dinner or even shopping for a few house hold items are all activities that should be encouraged.  None is better than adult day care.  Senior centers often have programs set up for those with dementia.  Never drop them off without warning the staff about their cognitive condition.  Never allow them to be without identification on them.

9.  Avoid  loud, chaotic, and crowed places.  Basketball games may have been great fun in the past but more than likely you will find that at some point they have will become frightening and worse still, dangerous.   PWD’s when frighten are likely to take matters in their own hands by running away and hiding.  Yes, even Dad who was a Green Beret  in the Army so many years ago.

10.  Trust – You will likely have to earn it over again.    Remember you didn’t lose it, the  PWD lost it.  It’s more important for the PWD to know you are someone who has their best interest at heart than to know who you are.

a) Tell the PWD every day that your glad they are living with you.  How nice it is to have them there.  LIE IF YOU MUST!  Tell them you love them.   Don’t assume they know it, or assume they remember you told them just last Saturday.

b)  Surprise them with gifts once a week.  A Flower,  A box of chocolates, A DVD, A Blouse, game whatever.  Just be sure to present it as a gift because when you were out, you were thinking of them.

c)  Give them the gift of self-worth.  A chore, something that tells them they are not only apart of but also helping the family unit.  Get Mom to tear the lettuce for salad.   Clear the kitchen table, maybe Dad can help wash the car or take the trash to the outside garbage can.   What ever the chore is it should be something they can do.  No matter how well it is done, you will receive it with praise and they will feel as if they are not just a burden to all.

d)  Play with them.  Maybe a card game like Gin or simple game of War.  Bingo may be to hard for them but “Flip Bingo” is designed for low vision and low cognitive abilities.

e) Interact with the PWD each time you see them.  Conversation is not necessary sometimes a smile and a wink is all it takes.  The idea is to avoid feelings of being ignored.

f) When your at their Doctors appointment with them make sure you engage the PWD  before during and after you speak to the Doctor.  It can be spoken word, a look or a small squeezes of the PWD’s hand.   The number one fear of most PWDs is being put in a nursing home.  So keep that in mind while you help them at the Doctor’s and keep their trust.    Of course if Dementia is caused by disease they will no doubt end up in a professional care facility at sometime so this fear is not an unreasonable fear.

“When Momma’s not happy – No one is happy” unknown   Making the PWD happy is key to having a happy home.

11.  Listen to your spouse.  Really listen, its hard on you but even harder for them.  Understanding and Compassion goes full circle.

12.  You can’t do it alone.  Schedule regular breaks.  Time off is critical to your health as well as the PWD.  Everyone needs time apart.

13.  Be flexible.  You may want the PWD to take a bath every day but settling for once or twice a week may work out better for everyone.

14.  Live in the now.  Forget about trying to make a schedule that the PWD can keep up.

a) Hand her, her pills when she needs to take them and know that you can’t make her responsible for taking them on time.

b) Wait until the day of the doctor’s appointment.  Then an hour before you need to leave say “OK Dad it’s time for us to get ready to go to Doctor”.

15.  Become an expert at forgiving yourself.  Every caregiver makes mistakes.  Let me repeat that every caregiver makes mistakes.  All caregivers are wonderful because they are trying to do something that most people shirk away from.   You have earned my respect and that of the Medical profession by trying to tackle this job.  Forget about the rest of the family’s opinion.  Most likely it will be clouded with guilt on their part and have little to do with what you are doing.

16.  Find a way to spend alone time with your spouse.  Your marriage will suffer from this task you’ve taken on.  It could end, if you don’t take steps to make your sure he /she knows that you love them and give them the care they need.

“What doesn’t kill ya, will make you stronger.”  unknown  So it is with this, many marriages end up stronger from this experience.  Both parties walk away with a stronger belief in the other parties loyalty and respect.

17.  Make your home safe.

a) Have some way of knowing if they leave the home.  In-expensive chime/alarms can be put on the doors above or below eye level.

b) Similar to child proofing for a toddler you will need to take steps to preventing falls.  See “Help I have fallen and I can’t get up”

18.  When reason fails.  Anger management.   No, not yours. the PWD’s.   Getting older is hard.  Watching ones own body waste away is hard.  However knowing your losing your mental facilities would be far worst.  So try to be understanding that the PWD may get fed up being confused and angry now and then.  No one wants to lose their adult status for a child like status.   When possible, give in and let them keep some dignity.   When you can’t try…

a) Agree with them until they stop fussing.  Agree to any and everything.  Get them to see you understand their point of view (it is not necessary to think they are correct or logical to understand their point of view).

b) Once they are calmed down change the subject.  Food or a drink works well.   Perhaps a game of cards.

c) Change the room they are in.  Have them follow you in the kitchen, or where ever.

d) Try again a little later, sometimes they will be in a better mood after a little food or some “one on one” attention.

e) If they still are not agreeable try get them to back down just this once.  “Dad remember last week I gave in on this so this time it’s your turn”  Try a bribe.  “Mom if you take the pills I will get you those donuts you like so much”

Bottom line try to win the war not just the moment.  Sometimes you giving up today’s battle is the best way to win the campaign.   Sure you may want them to eat a healthy meal, or even just a meal but forgetting the meal and concentrating on winning the PWD heart may cause an outcome that everyone would agree is better for all parties.