My mom has dementia compounded with exaggerated grief syndro

My mom has dementia compounded with exaggerated grief syndrome, hard of hearing and just recently stage 4 renal failure. I’ve read some posts and agree it is very hard when you can’t communicate with your best friend, live far away (normally it’s 3.5 hr drive, but we’re currently snow birds in Florida), and your in disagreement with your only sister, who’s the health care proxy. It’s been a long year. The last 4-5 months have been awful. I actually filed a. NYS dept if health complaint against the nursing home my sister put our mom in. Things have improved, but now with Mom’s renal failure there’s no hope of moving her to a decent memory care near me. Before Christmas I was trying to move her, which mom wanted. She recognized her neglect, and was trying to assist me in changing her health care proxy. I even obtained a lawyer. It got ugly. I’m a Christian and my sister is agnostic, but that shouldn’t affect how we care for mom. Very frustrating!

2 Hearts

I can understand how hard this is for you. I did not like how my sister took care of m mother many times. When she was dying my sister was upset with me because I told her Mom complained the air condition was too cold. Eventhough I talk to my sister now my Mother is in heaven I can never forgive or forget. It is frustrating.


My beautiful Mom passed Monday night, 1/27 at 11:30 pm. Today is actually the 5 year anniversary of Dad’s passing. She didn’t want to wait. In fact she was early! And that would’ve satisfied Dad tremendously. As a band/marching teacher, we used to always shout “To be early is to be on time, to be on time is to be late, to be late is to be dead.” As a believer in Christ, I know Mom ( & Dad) are very much alive and reunited. They are hugging each other once again. Mom is the happiest she’s been in years!!!! of us left here have had this same image. My parents were 2 love birds attached at the hip. My mom was never the same after Dad passed. She stopped taking care of herself, stopped eating, socializing, and that exaggerated her aging and dementia. It was not fun to watch. The last 5 years have been a nightmare, especially for my older sister, as her main care taker. I tried to offer her respite but she refused and even fought me the last 2-3 months.
I’ve told my kids, we’re going to have a concrete plan. My husband, my 2 beautiful children, and I are going to have a plan spelled out. Possibly notarized and kept safe alongside our will. I know I need to surrender my fear of dementia, this hideous disease, to my God and Creator. Otherwise it will consume me.
I am grateful Mom passed peacefully in her sleep. That was not the case for my Dad. He suffered terribly with sepsis. Though he had a DNR, the ICU kept putting him through a gamut of tests and procedures. I still to this day can see him with a respirator in his mouth, Eyes looking in fear, in pain from the sepsis, Drs probing and poking, 4 days later he was so dehydrated his tongue was hanging out of his mouth. Mom couldn’t even stand by her beloveds side. Those 4 days in ICU were awful, a nightmare. I am grateful mom passed quickly and quietly. And....early. Or was it. I always felt Dad was only kept alive by the machines. Ik this is morbid, but when the respirator was removed Dad gagged immediately, the lively nurse had to rush to get us. They put the respirator back in so we could saw goodbye. We already did, for days prior. I held my Dad’s hand, talked to him, and told him it was ok, that we loved him and knew he loved us. I told my mom that too!!!!! Numerous times. 10 days ago, mom was very lucid and said “I love you sweetheart!” I will treasure those words forever.
If you, or your loved one has dementia, get them to a specialized memory care facility, operated independently by a church, that is trained daily in how to love & care fir their guests. No one should have to suffer in a nursing home, with 4 grey walls, in a wheelchair alongside others groaning and neglected because the facility is under staffed and their families don’t visit.
I’m angry, and ik I’m being bold. Yet I don’t want to go through the same, nor have my husband go through the same. Nor have my children disagree in how I should be cared for.
Get a plan, be unified and let’s fight for our loved ones to have the dignity they deserve in they’re last days here on earth!

1 Heart

I agree with everything you said. As a matter of fact, I am actually filling out everything for my memorial, and my cousin has information on me living at home, rather than a nursing home if I become really ill.ake plans while you can or others will plan how you are taken care of. SO SORRY TO HEAR OF YOUR MOM LEAVING but she is at peace with your father. Monique8

So sorry that your mom has passed but your description about your parents is so lovely. Glad she didn't suffer. It does sound like the hospital ignored your dads DNR wishes. I wonder why. Must be something legal wise. I have heard from one person that it is good to have long term care insurance but I know I cannot afford it right now. HUGS to you!

I am so sorry for your losses. I too am a Christian and my Mom is in a SNF. We don't really have the "churches" here that can deal with this. This snf that my Mom is in is not perfect but they do care and have the same staff for years now, I know this because both my Aunt and Uncle were in the same facility, Not everyone can keep their loved ones at home. It is our job to find the best possible place for them

@zee4ward This is true, not everyone can care give at home. Of course visiting them often is a good idea so you make sure they get the best care.

I did not agree with my sisters treatment when my Mothe was bedridden and he jut made it impossible to see my Mother even when she was dying, My poor mother wanted to see me I can never get over it.

1 Heart

@Monique8 Families are tricky, aren’t they? When it comes to siblings, there is no knowing how it will go. I have seen many families who either don’t care about the one person who is caring for the parent or they are so bitter and angry about past hurts that the parent is neglected by the adult child. It is so sad to me. I guess that is why I am grateful to walk this journey alone. I am an only child, and although that is tough in and of itself, I am also not in any heated arguements about my Mom’s care. I have seen that more often than I ever cared to. I don’t understand why. Sometimes it goes back to childhood jealousies. Sometimes it goes back to chilidhood hurts. Either way I wish everyone knew that at this time, it is about the parent with the illness. I am sorry you went through that.