LO's grief; Any thoughts about what I might experience over the next few days?

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LO's grief; Any thoughts about what I might experience over the next few days?

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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.

Anosognosia Dementia Behaviors Grief Relationships

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Let the family know of your husband's illness so that they'll know and act accordingly.

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I ended up letting my sister-in-law's sister MJ know since they both shared the care of their mother as she progressed through AD. I simply said to her, "J (my deceased brother-in-law) knew this but I don't think he shared with anyone else. If I tell you that my husband has been on donepizil for several years now, does that tell you anything?" She grabbed hold of me, I felt so much compassion from her, and she said, "I did not know but that does help me to understand. And you are doing a wonderful job with him." I told her that if / when the time was right, she could tell my sister-in-law (but obviously this past week was not a good time to tell her). I felt so loved and encouraged my MJ. I only wish she didn't live three hours away.

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Even with his dementia, there is probably some sense of "My big brother has died--I'm next.". My father did not have dementia, but when his older brother died, it took some of the wind out of his sails.
Is your husband eager to go to the services? If not, you can certainly decline and explain to family that your husband is not able to travel.

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We did go to everything. The graveside service was the hardest because his physical disabilities were more intense due to being tired, cold, and the long walk to grave site which then made his emotions more overwhelming. As far the idea of "I'm next" -- he wants to be next, even before his brother passed, he was saying he doesn't have much longer and is eager to be gone from this life.

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Since your husband' emotions are labile, easily aroused and off the charts, I would opt for smaller group opportunities: maybe view the body privately with only a few family members present, opt out of the actual funeral ceremony, smaller group for family meals in more controlled environments (private room, no buffet, less people dining together). Then, you need to prepare yourself and others for your husband's behavior issues. Let others know your husband's diagnosis and behavior issues in advance of the trip. Expect that your husband will get upset and be OK with it. Enlist other family members to help console your husband - taking him to a quiet room, telling him that it's OK to feel sad, escorting and helping to restroom...

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We survived the trip. Because he was so weak physically, he spent much time sitting during both viewings. Folks spotted him and approached him asking if he was a brother (the resemblance is strong). And then the told wonderful stories about him which really gave him a boost. The repast was a buffet and we sat with family. I did notice one niece watching him closely. But he carried on conversations and didn't say anything too off.

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My mom accepted her diagnosis and decided for herself that she should not go to my sister's funeral, afraid she'd cause too much trouble in a strange place by getting confused. Also, it would have been a plane ride and simply thinking about the crowds made her feel ill. My mom has always been on and off totally aware of her declining memory issues. This must be extra difficult for you that your husband denies his condition. A thought about his seeming to over react to his brother's death: he may be only remembering his brother at the time they were children. So, the fact they were not close as adults doesn't register in him.

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I do think that his childhood memories are overwhelming the memories of the last forty years. He talked a lot about the old neighborhood, the ball fields, the friends they had, etc.

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In our case, we told his family and they really don't believe it and some just don't care. My husband has served his family well. We have friends who help and understand and we have family/friends on my side who are very supportive. My husband gets more agitated and we have had to make other arrangements to view the body with only a few family members prior to the family night or the actual funeral. Keeping my husband calm is my first priority. While his family is not around, they would certainly see it if they had actual contact with him. My husband's sibling, has frontal lobal dementia and her illness is faster and they are in shock. We no longer make the drive even though it is two hours away. It is imperative for me to do all I can to provide a less stressful environment. We kept it quiet for 8 years (we are now on our 11th year) because he could cope better.

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As Grandma 1954 stated, it could become very dangerous if he gets agitated in any way while you are driving, presumably on a freeway... any stops you make might also be difficult if you are in the ladies room - without him of course - the list goes on and on. I would strongly advise against taking a drive of this length alone with him under any circumstances. And as others have said - no reason to not share his condition with his family. Why should it be treated like a shameful secret?

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I never had a problem taking my Husband into the women's restrooms. Many places now have a Family restroom so I would look for that first though.
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!)

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To Sapphire15:
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.

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I experienced that when he was having seizures. I learned quickly to get off the road the second I was aware he was going into a seizure.

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If you are the driver, this is NOT a safe situation. Don’t go unless someone else goes with you, and let his brother’s family know about his diagnosis. They will understand your absence. No need to invent an excuse. There is no shame in it, and you could use every bit of support you can get from those around you, You can visit them in a week or two when it will be quieter and you can spend some quality time... and please do not do that drive alone.

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Why us this nor safe?

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Please do let us know what you decided to do, as it's not clear what the timing is or if our answers will be of immediate use.
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!

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We made it there and back without any traveling issues. He didn't get too loud too often and only once was it extremely inappropriate -- in the church when he recognized someone from high school. He forgot that you don't talk like that in a Catholic church. Once he spent too much time at the casket -- he was singing to his brother. I knew that if I went up to him to tell him to come away there would probably be a scene. A line he often uses in a situation like that is to snarl, "You are NOT my mother." But my sister-in-law, the widow, went up to him and told him other people wanted a turn, and he then came and sat down.

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please check in and let us know how it turned out. I don’t understand who it is a good idea to keep this from family. DH can be in denial but his behavior will clue them in. But it does not sound like a very close family so probably not that hard. Believe me, they will know after today. I would have used Coronavirus travel restrictions to avoid going at all. But hopefully it goes well.

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I am waiting to see if I heard from anyone asking about him. All went well. Not perfect, but not a disaster either.

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This is probably too late also, but I'd contact his doctor and get something for anxiety. If you have already left, contact them anyway and have it filled when you arrive.

You are brave to make this trip. I hope it goes well.

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I thought about that. I will keep that in mind for the future.

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Maybe a little late in chiming in here but it doesn’t seem to me like a good idea to make this trip with your husband. Sounds like it has the makings of a disaster.

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.

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If my dh was further into the progression of disease, I can see that being an issue. I visit a lady at the nursing home who believe her parents are still alive. I know they aren't, I know where they are buried, but I figure if I tell her, she'll grieve again. So I just turn her "I wonder why my mother doesn't want me" ramblings into, "Tell me a story about your mother." Better to get her to remember stories than to remember her passing.

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Have you thought about calling the nephew, explaining the situation and keeping hubby home? That's a lot of travel that can be stressful under normal situations add hubby's condition and the emotional stress of loosing his brother and throw him into a gathering of stress strangers! Think not only of what it will do to him to have his routine completely gone and be in strange place but the stress you are putting onto yourself! Maybe arrange to visit family a week or two after the services. You will have more control over what is going on. You will be able to sit and visit with family and he can reminisce with them about his brother. A smaller group will be more understanding of his illness and can help support you to get him through it.

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Since you didn’t mention it, I don’t know your ages - and at what age your husband was diagnosed. I can tell you that keeping this secret may end up causing a catastrophe, as it almost did in my family.

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.

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My husband is 66. I started tracking his behavior in 2015, he was diagnosed in 2017. My kids all know. One moved away last year because she couldn't handle him being around her family -- when a good job opportunity availed itself, they jumped on it. :( One moved away years ago after a big dispute between her husband and my husband took them in a different direction for their life. Another one plans to relocate in seven years. And the last one is the proverbial prodigal son who now lives in our basement. He has been a big help several times (and a source of agitation many others, lol). So the kids know, and I told my father but at 89, he forgets. He is full-time caretaker for my mother who is on hospice. The trips down to see them (five hours) are very difficult. I did go to counseling for a bit and was able to keep it a secret from him but someone slipped and said something and that was the end of that.

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2 years is a long time to keep this from family.
Is there someone you can trust to tell now and gently notify close family?
You may have to leave in the middle of the services.
I really don't think taking him to the viewing is a good idea is there any way that the "car won't start", "he overslept"?
Is your husband on any anti anxiety medications or any that will calm him? If not a call to his doctor might be in order. Taking something might help him with not just the long drive but also in the hotel. Being away from home, not in his own space can be very upsetting. Not to mention large crowds of people, lots of noise and confusion.

One of the important things "we" as caregivers can do is EDUCATE the people that we come in contact with on a daily basis. I believe being upfront and honest is one of the best ways we can educate family, friends and even strangers. Friends and family know something is not "right", they notice changes and they will ask what's wrong. As a caregiver you will need the love, help and support that friends and family can be.( even the irritating ones) So if close family asks what's wrong I suggest being honest, explain that he in in denial about the diagnosis and ask that they not talk to your husband about it.
(the bad way for family to find out is if it comes to a point where you can not care for him and you have no choice but to place him in a Memory Care facility and they find out then.)

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If someone asks, I am more than willing to tell them. None of the family is nearby so there is no potential support from them.

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Four hours is a long drive. How will DH do? The hotel is a good thing. I would suggest not going to the funeral until you have to. If there is a luncheon, be ready to leave. I would also make someone in brother's family aware of your DHs diagnosis. Explain that he denies his condition but he is not in controll of his emotions at this time. So, if you need to leave without saying goodbye, please understand.

I would say the Dementia has progress to the part of his brain where emotions are. He probably has no filter either.

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He does not handle long drives well. That was part of the reason I wanted a hotel room (we have noted on the reservation that we are arriving early and they said room will be available at 10, how great is that???) so he can decompress after the ride.

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.

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I think you’d be doing your husband a great favor if you explained his diagnosis to family and friends. The changes in him will be apparent, people are likely already wondering, and it would be a kindness to give a name to it and reasons for his behavior. He doesn’t need to know you’re doing this. Sadly, his situation won’t get better, letting people know will help them understand and hopefully be of help to you

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My only concern is if someone inadvertently says something to him, then there will be scene. Not everyone gets it when you say that they shouldn't talk to him about it. They know he has had ongoing health issues since the mid-90s, they just don't know his more recent diagnosis. I will bear in mind that if his behavior does get out of line, then it may be necessary to clue some folks in.

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LO's grief; Any thoughts about what I might experience over the next few days?

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