03.05.15 Some Things I Learned About Alzheimer’s – Making end of life decisions

happy fridaySome of the end of life decisions that should be addressed are:

Advanced directives – Living Wills, General Power of Attorney, and Durable Power of Attorney for Health Care

Feeding tubes? DNR – Do Not Resuscitate? Hospice Care?

All of these and more are discussed in a document on a wonderful website:

http://www.alz.org/national/documents/brochure_endoflifedecisions.pdf

Another link to their website about Alzheimer’s specific hospice care.

http://www.alz.org/care/alzheimers-dementia-hospice.asp

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Our experience with end of life decisions:

When mama’s overall condition started deteriorating about two years before her death we had a Living Will, an Act10993455_821131654621733_4917288774200550534_n of Procuration (general power of attorney) and a Medical Power of Attorney drawn up, signed and notarized.  This doesn’t have to be something you have an attorney draw up (it’s very inexpensive this way) at least not Louisiana.  Look into your state’s laws regarding these documents to see the correct forms for your state and the least expensive, yet binding, option for you.  I do not know if in other states the DNR and the Living Will have the same wording but in Louisiana it does.  I believe that Living Will is the most common term used now.  Perhaps it’s the nice sound of it as opposed to a Do Not Resuscitate!

Everyone, regardless of age or mental condition, should take care of these things for yourself now so that your family does not have to deal with it later in your life.  These are the types of forms that you can and should advise your loved one who has Alzheimer’s to take care of long before their thinking makes them unable to legally make those decisions.

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Hospice Care – Our experience

If you paid no attention to anything else I’ve shared with you this has to be at the top of the list of things you DO pay attention to.

It is one of the most important things you can do for your loved one who deserves their last months and weeks to be the best we can give them.

Hospice care is offered when a patient is terminal and has 6 months or less to live.  If they live more than 6 months they just re-certify the need and you continue receiving help.  Don’t think that asking about hospice is a sign of giving up.  It is not, it is a sign that you care so much for your sick loved one that you want THE VERY BEST care you can give them.

10396286_830004430448484_7403771438852782976_nWe only had hospice care for one week before mama died.  How I wish we had known more and had this amazing assistance much longer. We did not know any better and I surely hope you’ll listen so you’ll know better.

Calling her doctor, before hospice care came in, resulted in anxiety and so much stress.  A regular doctor’s aim in treatment is to make someone better.  They are just not going to get better with Alzheimer’s and neither the patient nor their caregiver should be subjected to the trauma of having to deal with a regular doctor.  When you call with a problem either they don’t call you back for a day or so or they want to see the patient.  When that happened I wanted to scream “She can’t go anywhere, stop asking to see her, just do something.”   They wanted to solve her problems with medicine and kept her on diabetes, high blood pressure and cholesterol medicine even though she was skin and bones and probably didn’t have any of those problems any longer.   I cried and cried, feeling so helpless to do anything for this woman who gave me life and loved me through my whole life.

The first day we were with hospice and were exposed to a medical staff that immediately responded I cried again, this time tears of happiness and joy.  They immediately knew what we needed and their whole purpose was to provide comfort, reduce pain and help us understand what Mama was going through.  They provided us with an emergency kit of  medicine that could be used without having to call the doctor, wait for them to call in medicine and go pick it up.

We are Southern Baptist and mama had been Southern Baptist for 87 years.  Our hospice spiritual person was a 10685542_851843131542168_6166661955711688889_nCatholic Nun.  I can’t for the life of me remember her name but I remember how amazingly comforting and PERFECT for us she was.  She respected our religious beliefs and did not in anyway do anything Catholic which would have thrown mama for a loop.  She listened to me and I can’t tell you what a relief it was to have someone who had been there, done that with so many others in my situation.  North Oaks Hospice was our hospice provider and every since one of the medical personal who helped us were absolute angels sent from God.

She and others in the medical team came to mama’s funeral and we received periodic visits from the nun throughout the first year after mama’s death.  They also have grief support group meetings we could have attended. I was able to receive so much support and understanding from our church members who also recently lost their mama’s and my God that I felt I didn’t need to go to the support group.  You may need to so don’t hesitate to take them up on that service.

We signed a Do Not Resuscitate Order (since we had her medical power of attorney) and were provided signs saying that and also DO NOT CALL 911 to post in locations where any visitor or caregiver would see in case she started to die and someone might be tempted to call 911.

Through all the information we originally provided to hospice and the decisions we made when signing up we didn’t have to do anything other than call our nurse when mama died.  They called the coroner and the funeral home, they came and bathed mama’s body and dressed her before the funeral home came.  Because she was in hospice with documentation of her illness by their medical doctor there were no questions about her death to answer which would have been horrible as we were starting to grieve our loss.

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MAKING FUNERAL ARRANGEMENTS

We wanted to have mama’s funeral arrangements made prior to her death.  We almost didn’t make it.  Not having10299138_10152688213756198_8107683129242871037_n hospice early enough to help us know that when she started going down hill the end would happen so quickly we didn’t go until December 18th, the morning of the day she died in the evening.  My sister and I were able to make the arrangements with a clear mind not deep in grief.  It wasn’t easy but I’d highly recommend doing it before.

I asked my mama early on before we realized she had Alzheimer’s to let me know what she’d like her funeral service to be like (names of songs, who would speak, what Scripture would be read, who she’d like as pall bearers) so we’d be prepared for whenever the time came.  She handled it so well and with such sweetness that I was very relieved.  I think doing this while their thinking is still fairly clear will provide such comfort when the time comes that you are indeed carrying out their wishes.  Getting your loved ones wishes down on paper will provide them and you comfort.

To show I’ve put my recommendation into action in my own life I’d like to share this:

I went with my son to the local funeral home a few months ago and made all my arrangements (and my husband’s).  This is ideal since I got to choose what I want and my son is relieved of making decisions wondering “What would mama want?”

I’ve already written up what I want in my funeral service including who I want for pall bearers.  My wishes are clearly expressed and it feels really good to have this taken care of.  Why don’t you go ahead and take care of that now for your loved ones to have?

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My overall thinking on this end of life subject is: Whatever we can do early enough for our loved one to know it’s taken care of, will give them significant comfort when their mind is everywhere and they can’t express their concerns to us. Hang in there, draw on your faith in God and do every loving thing you can for them.

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Please come back next time when I’ll share some topics about end of life matters.  If you want to get an email whenever I post a blog (I write about other things, not just Alzheimer’s) find the “FOLLOW” box which is usually to the right hand side somewhere, enter your email and respond when the confirmation email is sent to you.

If you are in need of prayer for yourself, in your role as a caregiver, or if you have any specific questions please send me a comment with whatever information you want to share or ask about. I’ll say again that I’m not expert, but I probably experienced with my mom a lot of things you’re going through and will try my best to help. If I don’t know the answer I will tell you I don’t know. I’ll never judge, I’ve been judged enough to last a life time and would never do that to someone else. My email address is rosalyn@selu.edu if that is an easier way to communicate.

Until next time,

1-john-3-18

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