How do you accept the decline of dementia patient even though you know it was coming?

3 answers | Last updated: Oct 01, 2016
A fellow caregiver asked...

How do you accept the decline of dementia patient even though you know it was coming. Making funeral arrangements so when time comes one less thing to do. My mom has slipped so badly. Praying the lord takes her as she is not able to do for herself and she acts like she has given up. How can I make her happy with time left.

Expert Answers

Audrey Wuerl, RN, BSN, PHN, is education coordinator for Hospice of San Joaquin in California. She is also a geriatric trainer for the End-of-Life Nursing Education Consortium (ELNEC), which promotes education in geriatric nursing and end-of-life care.

Living with dementia can be very difficult for families. You want to do everything you can for your mom, but accepting her decline"”which is part of the disease process"”can be physically and emotionally taxing. And, it is the behavioral changes, like needing help with dressing, toileting, and eating and even wandering away from home and getting disoriented, which cause families to institutionalize their loved ones. And, then dealing with all the guilt that follows.

With dementia, such as Alzheimer's disease, the brain is actually shrinking, and losing brain cells or neurons. This results in the loss of being able to perform even simple tasks such as dressing or eating. The inability to recognize family members or be forgetful or confused most of the time can create a great burden for the family. You already are trying to get some things out of the way like funeral arrangements.

This is where hospice can help you so much. Many people think of hospice care as being for the dying, and therefore not appropriate for someone who has "only" been diagnosed with dementia. However, hospice care can help greatly in the day-to-day living of a person with dementia. Ask her doctor if he feels hospice is appropriate for your mom. This will require his/her certification that your mom has 6 months or less to live. If she is appropriate, the hospice team is there to provide support to you as well as your mom. More than anything else, hospice is supportive care"”care that is tailored to help your mom and you enjoy the rest of the time together.

It is admirable that you are trying to make this time the very best for your mom. In the process, however, don't forget to take care of you!

Community Answers

A fellow caregiver answered...

I am caring for my husband in the final stage of Alzheimer's Disease. In our case the disease progression has been very rapid, the diagnosis made May of 2009, and enrolling him in hospice care has been an excellent choice. I have found all of the staff to be very supportive of both his needs and mine, and the greatest benefit for me is having 24/7 access to a nurse to help with problems that may arise. Prior to enrolling in hospice I called 911 twice to get my husband to the emergency room for treatment of an urinary tract infection because I could not physically transport him unassisted. Now I call the nurse or talk with her on the weekly visit to address any problems we may have. She can collect urine for analysis and the hospice doctor can order appropiate medication. This is so much less stressful for both my husband and me.

I strongly suggest that anyone dealing with an Alzheimer's Disease patient consult with hospice providers. Your loved one will not be enrolled if they do not meet the eligibility criteria, if enrolled every effort will be made to keep the enrolled patient and family as comfortable as possible, and grief consuling can continue for up to one year following the death of the patient.

Daisytcam answered...

I commend you on trying to prep yourself however you can for what will eventually come. My sister and I made arrangements for my father after my mom passed away suddenly and we were stuck with having to make arrangements while feeling numb from her loss. They were married for 56 years and since he is so much older than she was, we were concerned he may not survive musch longer after her passing. We made his choices for final arrangements with an emotional attachment and a clear head because we had had some time to recover from mom and he was still with us and at the time holding up well. Now that he is older and more frail, we have the one comfort that we do not have to do that again under the same circumstances when his time comes. You don't need any more added stress during a grieving time than necessary. Find your mom's life insurance papers now if she is insured, do you know what her preference is as far as burial? cremation or what cementary she would prefer or where you may have family buried? Does she already own a plot? Look into different locations and get prices, they DO vary i found out where i live. Speak to a funeral home for pricing and find someplace you can afford and feel comfortable with. Do as much or as little preperation as you feel ready to handle at the time. If you have never made final arrangements for someone before, ask funeral home and cementary about how they accept payment, if funeral home will wait for insurance check to cover expenses etc. Best of luck.