100 Dementia Caregivers Tips You Wish You Knew

Caregiver Relief offers practical approaches and collective knowledge from both family caregivers and medical professionals for caring for someone with dementia. Learn about the pitfalls of the medical delivery system and how to identify long and short-term goals.

100 Dementia Caregivers Tips You Wish You Knew

100 dementia caregivers tips was developed after years of working with clients. We at Caregiver Relief try to  provide insight and guidance to family caregivers. We offer practical approaches to caring for someone with dementia. We address at home from the earliest signs of forgetfulness, through to the end stages of the disease. We are providing you with collective information. This comes from both the family care giver and a medical professional point of view. This information is caring, practical and you will find, from many different perspectives.

We have worked with many family caregivers over the years. We have learned that you are the real experts. Medical professionals lack the real knowledge of caring for a person with dementia. There’s an old saying “Those that know, DO”.

We have developed this site to make you aware of the pitfalls of the medical delivery system. You do not know what you don’t know. But we have collective knowledge that might overlap your circumstances. Let us help make you aware of the likely problems and pitfalls you will face, so that you can prepare for the future.

Allow Caregiver Relief to assist you in identifying your long and short-term goals.

The collective wisdom you will discover on this site is a must for survival. Especially for anyone caring for someone with dementia.

As you learn, we hope that you will share your experiences on our site with others. So that they can benefit from your knowledge.

Did you know that:

  1. That 50% of the family caregivers actually die or become seriously ill BEFORE the person they are caring for dies. This is due to the stress.
  2. That most family care doctors /Primary care physicians do not know anything about dementia. Most will not refer you to a specialist. You will become the “expert”
  3. That a day may come when you may actually be envious of the friends that have parents that have already died. This is because they can have a life.
  4. That there are many different types of dementia. Your family member may not have the right diagnosis?
  5. That there are some medications for dementia that once started, if stopped, and restarted, will no longer be effective?
  6. That you cannot count on coverage or help for anything from Medicare or Medicaid?
  7. The right doctor can prevent or diffuse problems, or even eliminate a crisis situation?
  8. how to find the right doctor?
  9. How important it is to remember that there is a life after care giving. That life needs nourishment and attention everyday, now. Do not neglect it.
  10. Never be embarrassed by your parents actions or words. Realize early on that it is the disease, not the person acting or talking. Just make those around  you aware of that.
  11. For every problem there is a solution. You just need to give yourself an opportunity to allow the solution to present itself. With Care Giver Relief it will come a lot faster.

Life as a care giver is filled with appointments:

  • Going to medical appointments
  • Going to the pharmacy to pick up medications
  • Shopping
  • Cooking
  • Cleaning
  • Paying bills
  • And being on the phone to coordinate care or find resources. Then there is the meeting of the physical, mental and emotional needs of another human being 24 hours a day. This leaves the care giver feeling as if they are on a constant treadmill of care giving. All this and they have not met their own basic needs let alone, wants and desires.
  1. There are systems you can put in place to care for a parent, as a long distance caregiver?
  2. How important support groups are to arm yourself with knowledge and confidence. It is important to be as proactive as possible. That most caregivers become socially
  3. Things may not always appear as they seem. Some with dementia become very good at covering up their cognitive deficits. Other family members may not believe you that your parent has dementia.
  4. How important it is to catching changes early can make a difference with early treatment.
  5. How important it is to have your parent with dementia do as much possible, for as long as possible.. When they loose the ability to do something, it will not come back.
  6. All  the alternatives that are available to you?
  7. That dementia will bring out the worst in family dynamics. You must be aware and sensitive to how you communicate within the family unit.
  8. That there is a fine line between “allowing your parent” to be independent… and not “allowing” them to get into a potentially dangerous situation.

More dementia caregivers tips…

  1. Family and friends will disappoint you. Everyone has limits and boundaries. You must learn to set your own. Acknowledge and let go, some things are not worth getting upset about.
  2. Many times a family care giver needs to ask for help. Be specific about what it is you want and need and when it needs to be done. Do not hesitate to ask, do not feel guilty, or angry that you have to ask- just do it, because it needs to be done.
  3. That guilt is a wasted emotion and negates all the good you do. Work on getting rid of it. It strips away joy and other pleasure in your life.
  4. Family caregivers go through a grieving process As they see they are slowly loosing the person they are caring for. Realize this is normal. At the end, you may feel relief and sadness. Sometimes, emptiness at starting all over again can be a common theme.
  5. That one day, you may realize that there is something worse than facing death?
  6. How important it is to be prepared for future care needs? Do research into facilities long before you need them?
  7. Finding a dementia care facility is not easy.

A facility may say is does dementia care. If your parent:

  • acts out
  • or is aggressive,
  • is sexual
  • verbally abusive
  • a wanderer,

you may find the facility hesitant to accept your family member. You will find that most dementia care facilities have untrained staff. The staff is not trained in how to handle behavior problems. Most dementia patients exhibit some negative behavior during the course of their disease. (they should not call themselves dementia units, but they do)

  1. If you have a parent that is sexually active in a community or facility… neither party is privy to the other person’s HIV or hepatitis status
  2. Getting to know the staff and administration in the facility. It is important to know the dynamics of the facility and who the key players are.
  3. Do you know what legal, medical and financial papers are important to have in place?
  4. Know if quality of life or quantity of life is of concern to your family member? Will your family member want to continue to have preventative care testing? Or do they want to be treated should something newly discovered?
  5. Do you know how to deal with a difficult parent?
  6. Do you know how to deal with difficult siblings?
  7. Do you know when to introduce end of life care?
  8. Do you know where your family member wants to spend their last week, or months?
  9. That there are days when you must accept that you are only human, have limits and needs like everyone else. You cannot make everyone happy or meet every ones needs. The sooner you realize this, the healthier you will be as a caregiver.
  10. How to have enough energy to meet the demands for everyone in your family?
  11. That there are tests you can do at home to check your stress level?
  12. That there are tests you can do at home to test your memory and your family member’s memory for decline
  13. Wished you were able to separate your parent from the disease
  14. Knew how to handle all the physical needs and not hurt your own body.
  15. Realized how not to argue with someone with dementia, even in the very early stages.
  16. Dementia may be hereditary, and as we get older we worry that we will become what is happening to our family member.
  17. You will have regret and guilt. You may wish you had spent more time with your family member with dementia. You may wish you had an opportunity to make amends, express gratitude or forgiveness. Do not hesitate to take opportunities now. Do not wait. Remember, guilt is a wasted emotion.
  18. Wished you were better prepared to handle angry outbursts.
  19. Knew how to handle all the behavioral issues of your family member
  20. The first steps every care giver should take?
  21. How to handle the difficult behaviors?
  22. What sun downing is and how to deal with it?
  23. That bathing, dressing, eating can become a battle?
  24. That toileting can be a problem?
  25. How to make the home environment safe?
  26. That 6 out of 10 individuals with dementia wander. Meaning they could leave home and get lost
  27. Do you know the difference between pacing and wandering?
  28. Are you aware of the medications, what they are for and when they are to take them?
  29. Are you aware of all the important medical information of your parent?
  30. Do you have a mandatory evacuation plan in place, if there is a mandatory declared mandatory evacuation?
  31. Do you have weather safety programs in place in case of emergency?
  32. How are the communications between you and your parent? Driving, finances, need for future care
  33. Are you aware how other medical conditions may trigger behavioral problems? Do you know what those conditions are?

More dementia caregivers tips…

  1. Your reaction, your response, can have an impact on the behavior of your parent with dementia?
  2. The environment- TV, lighting, a mirror, can have an impact on the behavior of a person with dementia?
  3. Do you know how to respond when… a person with dementia becomes physically aggressive, violent, or sexually acts out?
  4. That this disease can break the the family without preparation and support. Consider having family can giving meetings.
  5. Caring for a person with dementia can be financially There is little, to no medical insurance coverage for the care that is required.
  6. That a once kind and sweet person can transform into a mean and nasty individual in a few seconds?
  7. Those most medical professionals do not necessarily understand dementia. Networking with other family care givers is key to support and properly treating and caring for someone with dementia.
  8. Do you have a fire safety system in place over the age of 65 years old?
  9. That the transition from one stage of dementia to another is not always a slow progression.
  10. Keeping a parent mentally, physically and socially stimulated is more important than medication?
  11. When to increase the level of care or change the short term goals for your parent?
  12. How and why family meetings are important?
  13. A person with dementia loses their short term memory. They are living in the moment. You must help them create a moment of happiness- for when it is gone, so is the memory.
  14. That you should prepare for caring for some one with dementia as if you were preparing for a triathlon. You need patience, endurance, and a sense of humor to make it to the finish line.
  15. Do you know all the resources available to you?
  16. Do you know the benefits of music at the different levels of dementia?
  17. Do you know the benefits of pets with some one with dementia?
  18. Do you know all the things you should consider before you move your parent in with you? or before you move in with your parent?
  19. Do you know how to respond to your parent if they are expressing delusions or seeing hallucinations?
  20. Do you know the difference between a delusion and a hallucination?

21. Do you know how dementia may affect the grandchildren in your family?

22. Do you need some ideas for special projects? Maybe, something a grandchild may be able to work on with a grandparent with dementia?

23. Keeping a gratitude journal and focusing on mindful living can provide the caregiver with a greater sense of well being,. More energy, enthusiasm, and sense of optimism are also benefits of keeping a journal.

24. Know stress relief techniques to keep your health at its optimal level?

25. Know how to prepare for life after care giving?

26. When caring for a person with dementia, it is important to focus on what a person CAN do, not what they can no longer do. Laugh, smile, hug, walk etc

27. That it is normal to feel angry at a situation and take it out on your parent and those around you. Your parent cannot help that they have dementia and how they are behaving.

28. How beneficial it is to live in the reality of the person with dementia and not try to re orient to the present.

29. Can you determine how your parent with dementia is feeling?

30. How to advocate for your parent in the doctors office, hospital, nursing home, assisted living or ER?

31. Are you aware of the benefits available to you through the Veterans Administration?

32. Do you know what to do when a person with dementia shows no interest in eating?

33. What to do when a person with dementia puts everything into their mouth

34. How to identify that a person with dementia is in pain?

35. A person with dementia forgets to eat and drink?

36. What to do when a person with dementia loves to cook – and forgets to turn off the stove?

37. The person with dementia may be able to cover up their memory loss and judgment. Especially if they have developed more social skills. Some are better at it than others.

38. That laughter is the best medicine – do not be afraid to laugh and find joy in things everyday. Your parent will benefit from the positive energy. And you can avoid caregiver depression.

39. That you should never move anyone into an AL or NH on a Fri because the weekends are understaffed?

40. Check your long-term care policy. It may not have a cost of living rider and care provided may be only during certain times in certain settings?