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CARENOTES / Past Carenotes / Discussion Forum / Let's Talk


Welcome to CareNotes. In this special section we will feature a reader's letter and provide an opportunity for an interactive exchange that will help find some answers and possible solutions to concerns. If you wish to respond to this letter, simple follow the link provided at the end of the letter and add your comments and thoughts to our CareNotes Board.

This Week's Carenote - 08/19/09

I am about to become the full time caregiver for my sick mother and I don't know what to expect.  I have read about the hardships associated with such a job and am sometimes petrified.

What can I do to prepare myself for this role?  I know there is no set answer, but I would like to hear from other caregivers how they prepared for their roles.

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Name: Brian
Location: Binghamton, NY
Date: 08/19/2009
Time: 09:06 AM


I went to Anacortes, WA to assist in caregiving for a friend. She had hospice and a loving husband that was in denial about the terminal cancer. Set boundaries, schedule time for yourself. GET SLEEP. DO NOT try to do everything on your own.

Name: Nora
Location: Kansas City, KS
Date: 08/19/2009
Time: 11:50 AM


You will probably think me paranoid, but one of the first things you should do is contact an elder law attorney. They will help you make a lot of decisions that will save you time and grief in the future. I'm not an attorney--just someone who wished she'd had this advice early on. Next, take help when it is offered. You will need help. Learn to count to 10. It is frustrating and challenging to deal with an older loved one who has difficulties communicating. Make lists. Your lists will get longer and longer, but if you are used to making them, it will come easier, and you will forget less. Laugh as much as you can, especially the laughter with your mother. Find at least one person you can say ANYTHING to without fear or guilt. It will save you sanity. Find a hobby you can do while close to your mother. Mothers sense your mood and they often mistake your boredom for sulking. Find the TV programs she likes and make note of them, then find a TV guide so you know when they are on. Encourage her to keep in touch with friends. Leave the room when she is talking with them so she can gripe about you. Brush your teeth and comb your hair every morning. If need be, get a baby monitor or some type of monitoring system so you can "rest" in another room. Help her keep up with her hobbies. When she can no longer do that, share your hobbies with her. Make sure she eats well--my mother wants cookies and ice cream all of the time, so I have to make deals with her about eating veggies and then the cookie. Be patient with her. Be patient with yourself. Some days you'll know why you are doing this and other days you won't. But take opportunities like this one to remind yourself of what it means to care for someone who cared for you and who you love. Good luck and God bless!

Name: sj
Location: chicago, illinois
Date: 08/19/2009
Time: 12:43 PM



Name: Karen Twichell
Location: Newport Beach, CA
Date: 08/19/2009
Time: 03:57 PM


I am an author and speaker on family caregiving and I always tell new caregivers to start with three things: Education, Record Keeping and Taking Care of Yourself. See my website for more information and suggested resources. My best to you on your journey.

Name: Lewis
Location: Western Australia
Date: 08/19/2009
Time: 04:34 PM


Hello fellow Carer. I have been a carer full-time for almost 10 years, I look after my father who is 84 and my mother is 86 Every situation is different. There are no rules that you can start with. What has been cope has. Have a good family doctor, and establish a good relationship. This is often the best asset to nuture. Your family doctor helps. Take time out for your self, that is a must. You will know what true fatigue is, but take a break, respite is essential for your own health and maintenance. Make sure you have an EPA (An Enduring Power of Attorney) Keep accurate medical and financial records. Keep up, (it can be done), all social and recreational activities. Ask family and friends to help wherever and when they can. Join your local Carer Association, they have support networks, with counselling services, etc, where you can meet other carers. You will find the first few months and so on demanding to say the least, but eventually a carer does find their way to meet the awesome things we take on. Hope this is of help.

Location: Ohio
Date: 08/19/2009
Time: 06:53 PM


Depending on the Physical health needs of your Mother, see if you can take a Nurse's aide Class at a nearby Nursing Home, Learn how to transfer to and from a wheel chair, to and from a hospital bed, use of a walker and gait belt, you might be able to learn some of the above from a Physical Therapist, see what is available for your home- wheel chair ramp, bath benches. Hospital Bed, raised Toilet seat....Also send for Senior clothing catalogs for people with disabilities-they have Great Adaptive Clothing for ease of dressing both men and women...these can be found on the internet. Please do not think that you have to do it all by your self.' Ask your Mother's doctor to give you referral/names of several local Home Health Agencies- go talk to them about your Mother's and your needs and what they offer in the way of hourly help in your home....They could even come to your home and assess what the needs are... if Hospice is involved now or in the future, go talk to them and find out what they provide assistance for, better to do that now instead of waiting until you are so tired and worn out and at wits end... Talk to a nutritionist/Dietitian about your Mother's special needs... Again do it now so you wont' be overwhelmed when the Day comes when Mom can't help you with decisions...include her in some of these decisions. as well as a Geriatric Lawyer who will help you make necessary legal decisions about guardianship, and POA for financial concerns/ banking/bill paying etc and Medical POA... Also ASK friends and family and neighbors/ and church friends who would be willing to give you a couple hours a week of their time to sit with Mom while you have some free time for yourself.. Hope these ideas/suggestions help.

Name: Celia
Location: Buena Park, California
Date: 08/19/2009
Time: 07:05 PM


I left my job and moved in with my Father to care for him after a stroke. I went along for a year without any help, thinking I could do this on my own, and my family gave no assistance. I am an only child. I thought I could be "super" caregiver...I found out you can't be...My advice to you would be to network with other caregivers and Associations that offer groups and respite. Reach out to those who have experience. Do not feel guilty, nor let your loved one make you feel guilty, when you take time for yourself. It makes you stronger to face your daily tasks of caregiving when you get a break or some time away. Also, pray a lot for God to give you the strength to carry on. I won't lie to you, it is exhausting, frustrating, and at the same time rewarding and heartwarming to care for a loved one.

Name: Robin
Location: Baltimore, MD
Date: 08/20/2009
Time: 06:18 AM


Sometimes it's difficult to be prepared because you can't always predict what the situation will be like. Every body experiences something different, every relationship is different. Try to get as much help as you can from what ever source is available. Try to set aside time for yourself (very very important). I find routines are very helpful once they are established. My Dad does much better with consistency and when he know what to expect. The hardest part in my opinion, is the emotional stress. I wish I were better equipped to handle this part. This is when it's important to have someone you can rely on to take over when you need a break from it. Build yourself a support circle. Best wishes.

Name: M
Date: 08/19/2009
Time: 03:070PM


This week has taken me on a journey I never wanted to take. For the first time my mother does not know me. She has lost all connection to my face, my identity and my voice. For the past five years mom has been suffering with Alzheimer's and lives in a Rest Home near by. Every day my husband and I have visited her and taken her out for a ride or for tea. It has been a special ritual that helped her quality of life and sensory stimulation .. and it has given us the satisfaction of knowing she looked forward to our times together. In December she became 100 years old and yet she was able to walk without a cane and chat about the simple joys of nature, streets, sunshine, clouds and changing weather. I often joked that she is my best teacher in focusing on coming into the present mom.

The date July 2009 will long live in my memory. It the beginning of an ending . It marks the beginning of a end of life as we knew it  and an ending of a life as an only child daughter. After returning from a few days vacation - my husband and I  were both shocked to find that my mom  has "Lost" any memory of us and the fact that we are married. She has forgotten entirely that we have been coming to see her daily for the past five years and continues to ask me who I am ,  if I know where her daughter is and why her daughter never comes to visit.

I am familiar with the symptoms of Alzheimer's and I know that this could happen one day, although one is never prepared for the emotional impact of becoming a total stranger to your own mother. These changes are further evidence that the disease in now progressing full scale, taking away even the smallest consolations we had a caregivers and  she had, as an Alzheimer's Victim.  Unless one has had an "Up Close and Personal Encounter" with a family member with dementia - it is difficult to imagine the heartbreak it creates.. or  the amount of emotional  readjustment it demands from both care giver and patient.

I have been told that the best way to approach our visits now is to avoid making any reference to being her daughter.  Unless she brings it up I do not mention that I have been there to see her each day.  In spite of the personal pain I am feeling , it is important to confront the reality and not walk away from her at a time she is most vulnerable. So I must focus on the calmness and comfort I can bring to her and let go of titles and relationships -

We are now just to pilgrims on this journey and our focus is  to relate only at the heart level - finding the moments of comfort in the midst of pain and suffering of lost memories.

May you never have to take this life changing journey and
May you never put off making time for those you love and 
May appreciate your loved ones --  while you still can.


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