For About and By Caregivers

Subscribe to our bi-monthly publication Today's Caregiver magazine

  + Larger Font | - Smaller Font

LET'S TALK ABOUT IT  |  Carenotes | Let's Talk Archive

Let's Talk

Welcome to Let's Talk About It.  In this special section we will feature the question/topic of the month and provide an opportunity for an interactive exchange that will help find some answers and possible solutions to concerns. If you wish to participate, just follow the link provided at the end of the question/topic and add your comments and thoughts.

Question/Topic for Jan/Feb 2012

How should a caregiver approach the subject of advance directives with their loved one?


Caregivers Reply

Shared by:Cristina
Plantation, FL

Roy, Thank you for your tip, what a great idea I'm always worried I do not hear my husband when he gets up at night.

Shared by: Jack Sladkey

Remember he is doing the best he can. Keep saying you are sorry. You will try to do better. He is not lying in his mind. It is the Alzheimers not your husband. Be mad at the AD, not your husband.

Shared by: Jane Mades
Wellington Florida.

If you are already in the role of Caretaker, this is a bit late. If only everyone could and would face the reality of the threat, just as we face other realities in life. That being said my advice is to engage a well respected lawyer who is current on these issues to find out what is needed,(I suspect Gary Barg and his staff might be able to guide you), then,bring the topic up without delay if at all possible. If not there are other things that a well informed Lawyer may suggest. Above all be sure that you yourself are covered, and keep these documents under review for update at least every three years. With respect to the dilemma of is there ever any joy in care giving, yes there is though it will likely take a long time for you to realize it. Take to heart all the words of real wisdom that have been already posted and remember that you are not alone.Good luck, God's speed and read the Optimist's creed everyday. You can easily find it on the internet.

Shared by: TJ

It is difficult when dementia changes the person you used to know into someone who is different and has negative behaviors. It is hurtful even when they become angry, lash out verbally and physically, but you have to remember dementia is a disease and it changes a persons inhibitions. When he becomes angry and exhibits behaviors, walk away for a few minutes, most likely his behavior will change in a few minutes. One day he will forget who you are and then he will be gone. You need to distance yourself away from the negative behaviors, do take time for yourself, get a manicure, read a book, take a walk, take care of yourself. When you do visit your loved one, make the visits brief as his attention span has probably shortened, discuss pleasant memories and remember to not take his anger personally.

Shared by: Mary

We both realized that 7 years ago things were changing. I am the caregiver/wife so I approached it as a necessary item on "the list ". I called a lawyer we knew not all that well but he was able to understand that this was the right time, he was a member of our church. We knew the importance of making choices, as to what we both wanted from this meeting. It is now 7 years later and I am having a review with a different Lawyer as we have gained so much from talking with others so much to take care of that we may have missed other points of view. We have both signed advanced directives to help each other and our children as to what our wishes are to be. Don't wait. Do it now. Its one item off the list plus after 7 years I belive it is out of date. Be good to yourself it is a most difficult time in every caregiver's life.

Shared by: Toni

I have read everyone's thoughts on the subject but still do not know how to approach the advanced directives issue with MY SON. He is only 37 but has progressive ms and is quadrapalegic.

Shared by: Donna
Brockton, MA

I am a middle-aged caregiver and have been taking care of my chronically ill and physically disabled husband for the past 7-years. It has been a roller coaster ride of hosptializations, and near death experiences. My husband despite it all remains in good spirits that encourages me to provide him the best care. This expereince has made me stronger, motivated and determined to create a well-balance lifestyle for him. Although, sometimes overwhelming this experience has made me a better woman and I have a different perspective of worldview. Thanks for the article!

Shared by: Kathy

My Dad, who suffered from Alzheimer's for many years, always carried his wallet. He didn't want to give it up. It was part of him and he had always carried one. It didn't matter that he didn't need it any longer, it made him happy to have it. On the days when I'd take him for a ride in the country and we'd stop to get ice cream, he'd always reach for his wallet to try and pay for the treat, bless his heart. I knew we only kept a couple dollars in there.I'd just say, "Dad you treated me last time, this one's on me" or I'd take his $2. and go pay for the ice cream and then put the $2. back in his wallet. Dad and his wallet are one of my fondest memories during his Alzheimer's.

Shared by: Jane Reed
Pittsfield, MA

A caregiver should always approach the subject of advance directives with their loved one with sensitivity. My mother in law recently passed. She was 93 and died peacefully with Hospice. She had a long standing history of dementia. Whenever I would attempt to approach her about advance directives (this was when she was much younger- perhaps in her early 80's) she told me she would be in God's hands. She called me Dr. Krevorkian and told me she had nightmares and was up all night thinking about this. I know for many elderly people it is a tough subject to approach. Please know I did not describe anything traumatic and just asked her if something happened and her heart stopped would she want to have life saving measures. Of course she did and felt this should not even be a question, nor should it be her decision, only the doctor and God. Of course I became her healthcare proxy and in the end, she did not want heroics and hospice was very involved and helped her through this difficult time. I think having advance directives is a gift we can give to families or significant others and relieve some of the stress and help to understand the choices. As a care giver, I think it is important to share information so that your loved one can make informed decisions while they are able and to have these conversations with a sensitive and gentle approach.

Shared by: George Johns
Piedmont, Alabama

This is indeed a crucial subject to address as early as possible between your loved ones and family members. I am speaking from experience on this and trust me putting it off is dangerous and could even be life threatening, let me explain. My wife suffers from a rare progressive genetic disorder called Arthrogryposis Multiplex Congenita. Her disorder has progressed throughout our 24 year marriage from leg braces to the wheel chair to being bed bound for 8 years now. We casually talked from time to time about her preferences if something should ever happen but we never got real specific about the details. Then one evening it happened, something worse than any nightmare I ever had. A simple urinary tract infection caused her meds to stack up and although she was 4 hours late for her next dose she OD on her Morphine and her O2 levels crashed and she suffered congestive heart failure. She coded on the ambulance and the EMTs brought her back and we went screaming to the nearest ER. It was there that I heard the single most life changing question ever, ”do you want us to revive her or just let her go peacefully?" without a clear directive to guide me it was my understanding that she did not want to be resuscitated and I tearfully choked on the words “let her go”. It was truly by the grace of God that she recovered on her own that dreadful night. Some time later we did have a VERY clear and specific discussion and much to my horror I learned that she wanted them to perform every effort to revive her but she didn’t want to be on sustained life support for more than 10 days. So please, please! have that discussion as soon as possible and be VERY clear and specific. I wasn’t and I nearly killed my dear wife and soul mate because of it.

Shared by: Nita
Washington, DC

I think advance directives are essential for everyone, and whether caring for a loved one or professionally it should be approached with gentle but firm priority. No one should be rushed into sorting this out, but neither should it be set aside and neglected.

Shared by: Jean Lenard
Durham, NC

My husband was diagnosed in March 2010 with Pancreatic cancer. We have developed a strong attachment with our church that has helped us and I in turn have a stronger believe in faith and God. Also a strong family love & support does help. I believe having that support & faith will help, should the need arise. Don't be afraid to get your friends and of course family involved for that further support. A caregiver alone cannot do it without that help.

Shared by: TJ

Life is to fragile and can change in an instant. Everyone needs to document their wishes in the event they would become unable to tell others. We never know, life is always changing. We make decisions about our life all the time, this is just another part of that, advanced directives, living wills do make a difference. Mine has been completed for some time, it's not an easy subject but families need to discuss. Remember it's your choice to make and it makes it easier for your family; they don't have to agonize over a decision they have made on your behalf. Discuss it and do it, complete your advance directives today.

Shared by: Jaleyn Dobbs
Creston, IA

I think it is VERY important to have this discussion with those we love! We as caregivers cannot do what they want if we do not know it... I have in my life had the opportunity to care for my grandparents and my Father whom I loved dearly. I miss them every day of my life however I do not have any quilt I know that they were able to die peacefully with dignity because they were cared for by someone who loved them!

Shared by: Orlando
Calistoga, CA

This is not about advance directive, but i need help My person who has demenca ask to see his Dr or wants to do something for example: Needs to see Dr for relief of pain so i set up appointment and all the way to appointment his tell me how much pain his feeling so i am telling his Dr this but once we're at dr. office, Dr will ask him How his feeling and he say's everything is fine and he has no problems,, What do I do ?? this happens often and not only with his DR, help!

Shared by: Dorothy Sellers

I believe it starts with a persons beliefs. If a person believes in God and believes that he or she will go to heaven when they die, I believe that the conversation will be a more comfortable one.

Shared by: Carole Bartoo, RN

I'd love some advice about what to do with resistance to best efforts to have this conversation. My stubbornly independent 80-year-old father stops us short whenever we bring it up by saying he fully expects for us to keep his last toenail alive, mechanically if needed, so that he won't miss any opportunity for extended life. He will joke, or firmly end the conversation and won't talk about finances, who he will trust to carry things out or the impact on my mother, who is 76 and has little income/savings. They do not talk with each other although they live under the same roof, and both have stubbornly resisted a serious conversation about dad's wishes. Thankfully we know what mom wants for herself. We live in another state and don't know how dad's finances are set up, how to access them or even how much there is should something terrible happen. This concerns me greatly because of the potential impact on my mother. Any advice, or anecdotes from similar situations (good or bad) would be appreciated.

Shared by: Rubetta Miller

We were at Baptist Hos. @ OKC,OK and my husband/Earnie had a heartattack ...on dialysis, enlarged heart, several hard things we had to deal with. The Dr ask about a DNR...Earnie was never ready to complete one nor talk about one. Two daughters of ours had their views of what they wanted which were different. Earnie heard the views & told the Dr his wishes. As soon as we got home he got his hospice family to come & he wrote his wishes. It was hard for us, but a blessing that it was his wishes and not ours to make. No daughter/son/wife is ready to say let them go without a long drawed out illness. Even then it is very hard! Thank GOD for DNR's & folks that push getting them completed & the will power to complete our own!


Follow Us on Facebook Follow Us on Twitter Follow Us on Youtube Follow us on Pinterest Google Plus