LO's grief; Any thoughts about what I might experience over the next few days?
My husband was diagnosed two years ago with FTD and Mild Neurocognitive Disorder. He denies it (I know, there is a name for that). Because of that I have not told many people.
His brother (3 years older) died two days ago. My husband's grief is off the charts. I'm not sure if this is normal grief or whether the dementia is exaggerating the grief. For the last thirty years, he has only seen his brother once or twice a year and talked to him on the phone a few times each year, so it is not like there was a lot of contact. We will be traveling four hours away to be at the viewings tomorrow and the funeral Friday. I am apprehensive of how his behavior and emotions are going to be. The family is unaware of the diagnosis.
We are staying in a hotel rather than accepting the invitation to stay in his brother's home. We've only been to their home once in 43 years, so it is not familiar to him at all and will hold evidence of his brother's life everywhere. Besides that being emotionally overwhelming, I also felt that a hotel room would give a degree of safety should he wander during the night. He gets lost in our bedroom, I can't imagine if he were in a house with a stairway.
Any thoughts about what I might experience over the next few days, especially at the first viewing and how to respond to the high level of emotions that I am expecting? His behavior in public is increasingly inappropriate (I hate going to restaurants with him) and I'm concerned that he is going to be a spectacle at the viewings, family meals, and funeral.
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Before my mother was diagnosed with late onset bvFTD (@ 86) my Dad had been keeping lots of secrets about what was going on for years. We knew my mom’s memory was bad - and were constantly rolling our eyes when her behavior was unexplained - but it wasn’t until about a year ago when I moved them in with me to provide more help for them that things went from bad to horrific! First of all - the move got her so confused & disoriented that she began having “episodes” as my Dad called them - several times a day. My Dad has had “bruises” that were unexplained, except he told us that his Dr said it’s from one of the medicines he was on. Once they lived with me I discovered these bruises were REALLY from physical abuse he was taking from my mother. (Mostly from fending her off & trying not to get either of them hurt!!) She constantly accuses him of infidelity - which is absurd, constantly thought my Dad & I were whispering about her - even when one of us was not at home, was paranoid of everyone & everything. Also has hallucinations, mostly bad ones!
When her sister died last August things got even worse. She began throwing anything she could get her hands on at everyone near her - for no apparent reason, tried to choke my Dad in his sleep a couple times, was always trying to find a knife to kill herself & everyone near her (she would say this so we hid all sharp utensils) - she ended up in the hospital in January following a Doctors appointment, and from there went to geriatric psych & is now is in MCF.
im not sure if the grief from her sister’s Death was what sent her over the edge - an edge that she couldn’t return from, but the psychiatrist feels it may have contributed to it. & by the way - moving from the hospital to the MCF was a 2 1/2 hour drive, she had to be sedated and someone had to sit in the back seat with her. The last couple of times she rode in the front seat she tried to open the door while we were moving.
I guess what I am saying is TELL YOUR FAMILY! Do you have children? If so, IMO - they - and everyone else - deserve to be able to spend the last bit of quality time they can with him. AND you need the emotional support! I hope you have a therapist - if you don’t, think about getting one.
You are brave to make this trip. I hope it goes well.
I would say the Dementia has progress to the part of his brain where emotions are. He probably has no filter either.
The brother that died is the only one on that side of the family that I told about the diagnosis. I am thinking there is one nephew that I may be able to confide in if necessary.
my dad was with my mom when she died but had forgotten what was going on an hour later. I didn’t take him to her funeral as we would have been making him relive his grief every few minutes as we reminded him what had happened.
Nonetheless.
The level of grief has to do with the original family connection rather than the amount they'd seen each other recently.
Keeping ALL of this information from the family is not working in your favor. It's time for some transparency. Either they can handle it or they can't, but if you pretend as if there's nothing wrong then the reaction is definitely going to be negative. If they know there is a diagnosis then at least they can be supportive and also possibly understanding.
I agree that going on this trip by yourself with your husband is probably too overwhelming and stressful, especially for one person. It doesn't sound like you can get any sleep at all if you're worried about him roaming. I'm not sure what the remedy is for that, but are there any other family members or hired caregivers that would be able to go with you?
If you feel that your LO is going to be a spectacle then it's not worth attending family gatherings UNTIL you let them know what is going on, and then it might be best if you limit it to private homes rather than public restaurants.
Wishing you the best of luck, and again, please report back!
There have been many instances where a person becomes so agitated that they try to take the wheel away from the driver or they try to open the door and get out while the care is moving. Being in a confined space when a person becomes agitated can be problematic.
My fear when going anywhere even the local store...if I even went into the next aisle he would not know where I was and would wander looking for me. There were times that he would start following someone else thinking it was me. I wold ask him where he was going and he would say..."I'm looking for my wife" and I would just say I will walk with you until we find her. I would leave the store with him and as soon as he saw the car he would get in and that would be the end of it. (He was so easy going!)