You Have Been Diagnosed Now What? Dementia Notes

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How to handle the time when you first get a diagnosis of dementia or another life changing situation..by francy Dickinson

senior walkingDear Francy: My dad just got a diagnosis of dementia and my mom has just found out she has cancer. I know they are both depressed and upset…what should I do now?

First its the shock. No matter what your age or how long you have felt out of sorts…when a doctor looks at you and tells you, your body is not functioning — it is a big change to your life. There will be depression, sadness and worry…there is no getting over that…but how you deal with it all, is the key.

Mental processes have to follow through with it all and talking it out to a few friends, family or a faith adviser is really the best start. Then its time to roll up your sleeves and find out what all this means.

Here is your list:

  1. Actively talk about the diagnosis and let the senior feel the pain, worry and fear. They have to accept and process through it. After that time has passed and they can get out their feelings progress onward. Its always OK to be sad, its just as important to try to end the conversation with an up tone.
  2. To heal, or to live on with tough medical news the mind needs to know what that diagnosis means. No matter if the age is 6 or 86 the person needs to understand the name of the diagnosis and be able to visualize what it is. So, you need to go online and read about it…find out the main points and bring those points down to understandable language. The idea that you can “save” a person from the stress of knowing a serious life condition is long gone…now we face truth and work through it.
  3. Talk about the options that are now on the table. If the doctor has not done this…you can make another appointment for a consultation or go to the net and find the answers yourself. To know the different procedures, medications, surgeries, or other options is something that makes the problem into a “situation to solve” instead of a “dread to face”.
  4. Get a second diagnosis from a professional in the line of specialty- for the problem. A family doctor can tell you there are dementia problems…but a neurologist will tell you more specific details and explain the process of treatment. The family doctor can say you have cancer but a specialist in that type of cancer can give you ideas for treatment and prognosis. This way…you have a firm understanding of what is really wrong. When this is done the mind will be calmer…knowing is very important.
  5. Record doctor appointments on your cell or with a little recorder. Many times we are tired or nervous and we forget what the doctor has said. Tell the doctor you want to share the information with your family and get it down on tape. This way you do not forget or over emotionalize the consultations. Some times the mind will zero in on one word and the rest of the conversation is lost. This recording keeps you clear of mind.
  6. Always ask what this new condition will do to the other things that the senior already is dealing with in their life. If they have a heart problem and now dementia…does that mean medication changes, treatment changes etc. If they are a smoker, drinker, or even on heavy medications, does that mean a different type of treatment for the problems? If they now have cancer does that mean that their special “diabetes diet and drugs” can continue or is there a conflict with the chemical interactions? The specialist will know these things…and you will find support groups online that will share their journey with you so you can make changes. When you understand all these details…your own mind will be calmer.
  7. Understand that the body has to fight the invaders of what ever diagnosis that has been given. So a sincere re-think of diet and supplements has to be made right away. Keep in mind you have to boost the body’s ability to fight the new problem. So new supplements and new ways of eating and exercising will simply boost the ability to fight the invading problems. This step is not in place of medication…it is in addition to medication that will help the body absorb and heal faster. As everyone ages…we all need a boost of help with quicker healing. To ignore this step is many times to hasten the end of life issues.
  8. Talk and talk again. There are lots of things to talk about. There are business things…home, care, money, investments, insurance, and care giving. It will all be needed in the future. So talking about it right now…gets it out in the open and you can seek help from local services of needed. Do not delay in this important part. A person who is extremely ill or under mental/emotional stress does not make choices well. So do it now.
  9. Talking about end of life issues is always hard to do. To make sure a Health Care Directive is agreed on and understood by the family – will mean you can set that hard part aside and deal with the healing and everyday issues. Find out if the person, wants to extend their life, relax and let things take their course, be tube feed, resuscitated, or in the end – cremated. Once again…this is what you do as soon as you can so the ideas are set, papers signed and then it is put aside and you don’t dwell on it.
  10. Is there something an older person wanted to do before they are really unwell? A bucket list type of thing? Maybe they always wanted to visit a family member or see a special place, or return to their home town. Ask the elder what they had hoped to do and make sure you can try to make arrangements for this to happen or something like it. A brother can come to your town…instead of a big trip to his town…or a place can be seen via the web cams instead of a big car trip. But allowing the senior to dot the i’s and cross the t’s of their life, is very important.
  11. Make sure the family knows about the medical conditions. If a child has not spoken to the parent in years…this is the time to write them a letter to let them know the situation. This way they can make a decision to come and visit and let the hurt and years of upset – lay to rest before the senior is no longer with them. You may not care for the family member…but the senior loves each child and each family member and its not for us to judge.
  12. Take pictures of the senior and make video or audios of the senior and their childhood stories and family knowledge. It helps the senior sort through their life choices and leaves you with a remembrance that is very dear. This is a ritual that will really help the senior in their life journey.
  13. Put together what you will know as the dream team of health care. A good specialty doctor that you can talk to, a nurse practitioner that will help with the everyday things, your senior and you and any other person that will give care. Then make a pact that you will all work together to keep the energy and emotional levels up and support each other through the journey.
  14. If end of life issues are being spoken about…call Hospice…do not wait. Too many families wait and do not get all the benefits that Hospice gives. They will come to you and make an evaluation…if they feel it is not time for them…they will put you on hold and check in with you every month. If it is time, they will assist you in ways that really allow you to be with your family member, not only be the 24 hour care giver.
  15. Hurtful family history should be put aside. Thinking about how to make the senior as strong as possible in their mind, heart, and body is the key. Remove guilt and anger. Try very hard to just be in a settled and joy filled mind set each time you visit the senior. Things that happened years ago…are now gone…today has time for joy.
  16. Medic-alert systems are a must if the senior is starting on a downward journey and living alone. These systems will allow you and the senior to be assured that someone will come to their aid in an emergency.
  17. Since both of your parents may need health care…here is advice on how to deal with partners in care together. Click Here for information if your parents can not care for each other.

I hope this list will be of help…I know that all the things on it have happened to me over and over again…and when you tick them off the list…your mind and heart feel free. I thank you for caring for your senior and I wish you well on the journey…francy