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This is my synopsis of Dr. Rabins Special Report from John Hopkins…To list his qualifications would be a post in itself, so I choose not to….lol|
He starts by suggesting as soon as you have a diagnosis of any dementing or debilitating illness, educate yourself. You may get different diagnosis from different physicians and this adds to confusion. The better you understand the diagnosis of a disease the better it is to dispel fears and worries, and helps you plan for the future.
Your next step is finding a physician who can take the time and interest required to care for your loved one. As we all know is a struggle in itself. He offers that we shouldn’t settle. If we feel the doctor isn’t up to what we want for our loved one, to try and find another. I know that in our case it has been almost a 4 year battle to find a neuro around here that knows anything or even cares. Also with dementing illnesses you might want to find those with special skills, social worker, nurse, recreational, occupational or physical therapist….
It is important especially with a disease that progresses, much can be done to provide a quality of life for the patient. The key with dementing illnesses is coping with the different types by using common sense, that sometimes being close to someone fogs our mind and doesn’t give us the opportunity to look at it openly. We think of the person as they were, not as they are and tend to think they are doing things on purpose to aggravate us. At other times there is no one better THAN a family member to see what can be done to alter lifestlyes. Here are some general suggestions.
Be informed: the more you know about an illness the effective you can be as a caregiver
Try to solve the MOST frustrating problem: single out the one thing the puts you at the end of your rope and go backwards from there.
Get enough rest: well…he lists all the things we all know about but somehow just can’t afford…..
Use common sense and imagination: ADAPTATION.is the key word here..if something can’t be done one way..try, try again..as an example.. if a person can’t use a fork or spoon and do better with their hands..let them…don’t fight it..serve as many finger foods as possible….
Maintain a sense of humor: I personally love this…if we couldn’t laugh at all the things going wrong, the “perks” of PD and dementia..boy oh boy…I’d be face down in my own tears….
Try and establish an environment that allows freedom but at the same time structure: in caring with those with dementia, the best thing is NO change in environment…if they choose to keep their wallet by the bathroom sink… leave it… it’s not hurting you and it’s not hurting the wallet….
Change routines only when the old ones aren’t working: Keep the persons surroundings simple. Leave furniture in it’s place. Put away clothing.. or if they like it out on the dresser.. leave it…Change for the sake of change often presents them with something unexpected and challenging which throws them off….
Remember to talk to the confised person: SPEAK CALMLY AND GENTLY…Avoid talking about the person in front of them and remind others to do the same…..
Keep the person active but not upset: don’t sit them in front of the TV and walk away…he stresses this more than once. While keeping active won’t stop the disease it can slow it down…keep activities within their cognitive limits…because “learning” may be an issue new games or activities that one has to be taught should be avoided. Go with things the person knows or knew…eg… playing cards…say a person loved to play rummy at one time, but says they now don’t want to.. invite a few folks over to play.. they might not join in at first, but as they see the “good time” going on they will probably want to join in.
Too much activity or pressure often upsets the person and everyone around…the key is balance….
!. accept the skills lost as gone for good…(the ability to cook) BUT…if they can still peel potatoes, cut carrots or anything to “help” with a meal…let them join in.
2. sometimes small amounts of excitement can upset a person, yet on the other hand, socialization can be rewarding…take a walk, visit an old friend..as examples…
3. Look for ways to simplfy activities….. playing cards at the dining room table may be uncofrtable but try a table next to their favorite chair in the living room….
4. look for things the person is still able to do and focus on: for example..if a person can’t find a word to explain and uses gestures…let them point out to you the things they can not come up with the words to.
5. Find someone to come in OR find an adult day care……
Caring For Yourself
This section really didn’t add anything new to what all of us already know… the “sick” persons well-being depends on OUR well-being….
OF course the usual list of: sad, discouraged, frustrated, trapped, tired, over-burdened are all there…. Multiple responsibilities..family-job-children…and you have been short changed….
Try to find ways to deal with annoying behaviors that irritate, provoke and simply exasperate you….changing the person’s behavior is often
not possible..to cope… rest and getting away..we’ve all heard this before
Behavior problems are often damage to the brain and can not be stopped or prevented….but you may be able to lessen the frequency…YOUR mood during these instances can effect their behavior. If you are rushed, tense or irritable they sense it causing them to be anxious or more irritable.. move slowly, talk slowly and softly…yelling begets yelling…anger begets anger… frustration begets frustration…..
Biggest thing for caregivers is the feeling of failure… that you have failed because you are not caring as you should…asking for help is not a failure… you need rest… you need to get away… and finding places through social services and community groups is a necessity in full time caregiving for you to get the rest and breaks you need….
TO those of us who having been doing this for a time…this is old news but for those of you more recently involved these suggestions may help you even more……