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vjw

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M1

This sounds extremely volatile vjw, and likely not safe for you or your grandson. I had to hospitalize my partner last year when she threatened me when I would not let her drive, and she went from there to memory care. I simply could not care for her at home any longer, and you may be nearing that point.

There are other threads about staying safe that are worth looking up. identify a room in the house that you can lock, and always have your cellphone charged and with you. Hopefully you have POA? Because it's very likely that he would benefit from hospitalization to get on a better medication regimen. At the very least, you should consider researching what medical facilities near you have a geriatric psychiatry ward where he could be treated. And, frankly, he would need to be regulated before any facility would accept him.

Remember that your life and your grandson's life are just as valuable as your husband's. there are limits to what any of us can do. Call the doc who is prescribing for him and tell them what's going on, it doesn't sound like the medications are sufficient.'

Please keep us posted.

Denise1847

Dear Victoria,

I am grieved by your experience. I am so very sorry. I would be terrified to have this experience. It sounds like the meds are not working and the doctor needs to intervene with adjustments or a different med. Please protect yourself and your grandson in any way possible. Please keep us informed of how you are doing. I will be praying for you and your situation.

eaglemom

I so wish I could change this situation for you and your DH. But, alas, I can't. Does your DH see a neurologist? I would definitely notify them about your concerns.

You have been married to him a long time. But when dementia enters the picture everything changes, they change. I would hope your grandson understands somewhat the ugliness of dementia, especially since he's living there. You have to make certain you keep yourself safe. Safe from your DH's outbursts and temper.

You've received some wise council, please take it to heart. No one wants to be ugly, we have your safety and frankly your grandsons safety at heart. I will give you the ALZ Helpline number. 800-272-3900. It is answered around the clock, ask to speak with a care councilor, that it is urgent. That will be difficult if you DH is beside you, I realize. Put the number in your phone.

eagle

Ed1937

Please follow the link above to Lady Texan's post. It is important to know what to do when you have to do something. I would only add that if you use a room as a "safe room", be sure it has a window that you could crawl out of if he breaks the door down. You don't want to be stuck with no way out.

Also add my voice to having his meds tweaked by a competent doctor.

easy23

"We have been married for 40 years. He is a recovering alcoholic. 35 years of sobriety. I feel like I'm reliving the past. Walking on eggshells. His temperament reminds me when he drank."

Is there any chance that he's been drinking again? My DH was sober for 20 years and started sneaking vodka. Dementia made his drinking behavior much worse. I didn't know he was drinking until he had to be hospitalized for hepatic encephalopathy - elevated ammonia levels in his blood. Once he stopped drinking again his behavior changed for the better.

Caro_Lynne

Please listen to advise regarding his meds. My LO was baker acted for a violent outburst back in April, the one positive outcome of his stay was an adjustment to one of his meds. He was taken off of seroquel and prescribed risperidone. Since then his violent/aggressive behavior has subsided. I was amazed at what a difference that change made!

I was lucky to find an excellent geriatric psychiatrist that is now further helping me adjust his meds as needed. He was previously tested by a geriatric psychologist, (which ended after 30 minutes of what was supposed to be 2-3 hours of testing) concluding he was significantly cognitively impaired. Since he was not an MD he could not prescribe medication.

This forum is an invaluable source of information and support.

Quilting brings calm

The person that needs to leave is your DH. It’s is not safe for you or your grandson to be there with him. It’s not safe for you if your grandson leaves and your DH does not. You’ve had your warning episodes already.

In addition to it not being safe…. What happens if your grandson tries to protect you or himself and your spouse is injured as a result? Or even if he is not injured, the police detain your grandson? Your spouse is old enough that your grandson could be charged with elder abuse just for defending himself.

Your son and DIL need to be tapped on the shoulder to do research for you for the various facility possibilities- located either near you or them. This is in their best interest to do so that your grandson can continue living with you during college. Them doing the research helps you keep it from your husband until you need to tell him. It gives you choices when you hospitalize him and need to make a quick decision for placement.

Dio

VJW, everyone else has said it: You and your grandson's safety come first! Please heed the post from LadyTexan and others who have experienced what you're going through.

Iris L.

Are you venting or seeking answers?

You are complaining of danger to your grandson and yourself (shovel over the head, fortunately not a shovel to the head), yet he's not bad enough to be placed. You are right partially, because no facility will knowingly take such an aggressive and dangerous patient. He needs medical management from a specialist, a geriatric psychiatrist.

You are reluctant to try Seroquel. Many PWDs are on dosages of Seroquel or other anti-psychotics with improvement in quality of life of patient and family members.

Someone asked could he be drinking again. Could he be?

Iris

PookieBlue

VJW

   My DH who is probably at stage 6c, had bad outbursts with me a few years back when he was in stage 4 to 5. He is also an alcoholic, and currently still drinks which presents extra challenges in itself. I was the brunt of his verbal attacks and name calling. He never really got violent with me, but some of his outbursts sometimes had me questioning my safety. It was only me and him so no third party. We lived in that world for I think not more than a year. I adapted my interactions with him to keep our environment calm with easy listening music and avoiding triggers such as his drinking and selling his sports cars. I kept him on a fairly consistent routine with meds and meals and showers. I learned to recognize his facial expressions that indicated he was going into that ‘dark place’. I would redirect his attention, distract him with whatever and ALWAYS be agreeable. We still have an occasional outburst where I tell him I understand and that I’m proud of him when I calm him down.

    I come from a large family, six sisters and four brothers. They do not live close to me. We rarely have visitors. He has one sister 2000 miles away. This week I have six family members visiting for a few days. The first two days he did well and tolerated the increased activity. This morning he tried to enter that ‘dark place’ and luckily I was able to head him off at the pass by fixing and egg/bacon/cheese sandwich that he requested. He was saying he does not like gangs, and I had to explain who our guests were. He’s calm again now so hope it stays that way. A week ago he had cut way back on his drinking, but the current active evenings it has been creeping up, so I hope when the evening settle down in a couple of days it will decrease again.

My husband has not seen a neurologist and I don’t have him on any anxiolytics, antidepressants, or psychotropic medications.

VGB

SDianeL

so sorry you are going through this. My husband is angry but not violent. I did ask his Neurologist for medication this week. I found that my husband is better if I don't try to tell him what to do or how to do it. I only intervene if he's going to hurt himself. It seems that he needs to do things himself to try to maintain control. I've found that asking him for help works sometimes. I found this on this website. It might help you. https://www.alz.org/help-support/caregiving/stages-behaviors/agression-anger

ButterflyWings

VJW - what a nightmare. We are sending you light and love. Your post reminded me of many years ago when I was married to an alcoholic spouse. Terrible, horrid times. I could not see to end it for me, but did so for the kids. Still, they bear scars (emotional) from having to cope with a "normal" atmosphere, that is anything but.

I will not speak for Iris, but she is a retired medical professional who also has shared openly her unique and valuable insights as a person with cognitive impairment. I know her to be compassionate and direct, but never sarcastic. I took her question about rant vs. seeking advice because both are very valid, and very common here. And sometimes when we are sharing to get things off your chest, you don't really want people trying to give you solutions or advice. No criticism, just trying to get clarity to be most helpful. Anyway, you are free to rant and also to take what you like, and leave the rest, for the many ideas people try to share from their own intent to help.

OK - What I really wanted to share with you is that my DH, my love, was hell on wheels during 4/5. As sad as I am to be living with daily loss of this beloved other half, at Stage 6 (it has plateau'd (can't spell that lol)) stuck in 6 for a long time). More physical ADL work for me (and lots more laundry haha) but it has been sheer relief from the roller-coaster, whiplash days of constant dementia surprises, shock, awe, and often despair in the mid-stage that you are dealing with right now. And for us there was no alcohol involved thank goodness.

Still, I could barely keep up and really could not keep him or me safe, without Seroquel and an antidepressant. HUGE help. And he is not sedated, a zombie, or anything like that. Its been 3 years now with no negative impact at all. The Black box warnings didn't deter me as they are legal required cautions that affect very, very few people. And the alternative was so totally dangerous, stressful, and unsustainable. It also made no sense to me really, to worry about possible heart failure and sudden death, for someone who is dying of Alzheimers, and the longer he lives it will strip him of every single ability he ever had. Dementia is terminal. The meds needed to keep him safe and a bit more comfortable, not to mention preventing violence -- I am grateful to have a trusted medical professional that knew what to prescribe and how to explain the relatively low risk, vs the benefit: better quality of life for my LO and me, while we ride this out. Please give it a try.

Lastly, he may have a silent UTI. No other symptoms but a sudden escalation in problem behaviors. During this time I was disappearing hammers, bats, the large garden tools, knives, etc. He thought intruders were afoot and was weaponizing at night which could easily have become a dead me, in my sleep, because dementia can cause them not to recognize you with no warning, sooner than you might expect. Please remove any guns or other heavy things that could be weaponized. You may be numb, like I was (still am to some extent) and not realizing how truly dangerous and alarming this is. Please tell your Dr. and don't sugar coat it. Can you secretly videotape him with your phone when he is raging? He needs help before he devastates your grandson emotionally or physically. Been there, done that. Please don't let your strength and faith that he got better before, normalize this. With dementia in the mix now, this sounds like you are truly in imminent danger -- throwing shovels and even aiming things AT you? That's a ticking time bomb.

Iris L.

VJW, I was not being sarcastic. Frankly, your post frightens me, because I have the impression, based on what you have posted, that you and your grandson are in danger. Many caregivers post asking for help on dealing with dangerous situations. OTOH, some caregivers post only to vent and are not soliciting advice. I was unsure. If you wanted advice, there was more I could tell you. But I see that other members have given you excellent advice. Unfortunately, your story is not uncommon. I hope you find answers for yourself and your grandson and also for your DH because he is in distress, even if he cannot verbalize his distress.

Iris

eaglemom

That was an excellent response Iris. I too was unsure if she was seeking advice or venting. Either one is fine, it was just unclear to me.

VJW, you can see that as a community we want to help those that post. There is a lot of wisdom and experience wrapped up in the message boards. Of course you'll do what you feel is best for you and your grandson, as it should be.

eagle

vjw

I deleted this thread because I am already an emotional wreck. my stomach is in knots, I am mentally exhausted and my emotions are right on the surface. I know many of you have been here for quite a long time with much more experience and wisdom.

I joined this site to seek out information and for some guidance and advice. I do appreciate those that have responded and have given me much to think about and discuss with the neurologist.

This is all new for me. I did not come on here to be made to feel like I'm being lectured or responses coming across to me as condescending and sarcastic.

Elshack

I am sorry you deleted your thread, vjw, I don't think the posters were lecturing you or being sarcastic. It sounded like you and your grandson are in immediate danger and I think others were just trying to help. I hope nothing horrible happens to you or him and the neurologist can RX the proper meds for your DH if you tell the Dr. the real facts and realities of your situation.

harshedbuzz

@vjw

I came back this morning to reply to your post and was surprised to see it gone. I don't know if you were responding to Iris's question about venting vs solution-seeking. Both kinds of posts are encouraged here. I truly don't think anyone meant to condescend or lecture.

There are years and years of dementia caregiving experience here collectively. Some of us have lived the scenario you laid out. My dad was an alcoholic with dementia who presented with challenging behaviors. Dad had mixed dementia, Alz and an alcohol-related WKS. I would encourage you to seek out a geriatric psychiatrist for medication management if possible. Behavior is communication. When a PWD is acting out, there's generally anxiety they can't process driving the bus. Dad's geripsych was able to treat him with a low dose cocktail of meds, including Seroquel, which allowed him to remain at home until a few months before he died.

That said, dad started murder/suicide ideation describing a plan in which he and my mom would die at the same time because they did everything together. I had him placed within the week. I knew I was going to lose dad to dementia; I wasn't going to let it take my mom, too.

HB

vjw

Thank you. Left a message with the neurologist and waiting for a response

M1

vjw, I second all that's been said. No one trying to lecture you, we are just concerned for your safety. those of us who have been a while have heard (or experienced) similar things before and know how fraught this can all be. Please keep us posted and I hope you'll keep coming back.

Ed1937

vjw, nobody wants you to leave. We want you to get all the help you can get here. And please don't think we are ganging up on you when we say that Iris meant nothing but good for you. I remember she posted, but I don't recall the exact wording. Is it possible that you were taking the post in a way that it was not meant? Sometimes when people are stressed, it's easy to misinterpret things.

So stick around, and post. We'll help with support, understanding, and compassion. This is a rough disease, and everybody needs help.

Jo C.

Hello vjw, and a very warm welcome to you. It is great you have found this wonderfully supportive place; there is much experiential wisdom to be found from Members who are farther along the path or who have problem solved similar situations. When I was going through "the worst of times," this is the place that helped me keep my head above water. Some wonderful folks here and we all understand as we are all walking or have walked similar paths.

The Alzheimer's Assn. has a 24 hour, 365 day a year Helpline that can be reached at, (800) 272-3900. There are no fees for this service. If you decide to make a call, ask the nice person answering the phone to transfer you to a, "Care Consultant."

Consultants are highly educated Social Workers who specialize in dementia and family dynamics. They are great listeners, have much information, and can often assist us with our problem solving. One can call to ask for assistance, or just to talk and vent feelings; it is all okay. Sometimes, in the midst of a dark night, it can be good to be able to reach out and find a helpful kind voice. One can call as much as one wishes or needs to. As said, there are no fees for this service.

Here is hoping that medication can be adjusted for your husband which will bring better results. My Loved One , (LO), was over the moon in dread behaviors and meds were not being very helpful. Then we got to a very fine Neurologist who prescribed Risperdal and within a day, it was like a miracle had occurred. Not perfection, but SO, SO much better. Also good to have the "type" of dementia confirmed as that can evolve as time goes by. My LO was misdiagnosed as having Alzheimer's Disease, but getting to a good Neurologist made a difference; the true diagnosis was FrontoTemporal Dementia which explained a lot and meds had to be adjusted. Some meds work well for some types of dementia, but are contraindicated in other types and can make things worse. It takes some time to get it all together and find the best approach with an accurate diagnosis.

In dire straits, it is not unusual for a LO to need to have help as an inpatient on a GeroPsych Unit. There would be 24 hour assessment, medication adjustment and ability to assess for med effectiveness and any side effects. My LO needed that level of care and though initially uncomfortable feeling, it was best it was utilized. It made a difference and making best friends with the psychiatric social worker also helped me to get contact information for helpful entities as well as being given names of long term care facilities should that ever be needed. NOTE: Even though one may decide to continue care at home until the end, it is a good idea to always, always have a potential, "Plan B." This way, if something untoward happens quite unexpectedly, you would not have to be running about under stress and time constraints. One can begin to screen such long term settings online and then visiting those places that seem to fit needs best. That would be a baseline for a potential "Plan B."

Another priority is pretty much to be able to get to an Elder Law Attorney; that specialty has the skills and broad range of special knowledge to set into place safeguards and position one as well as can be financially.

It is a lot, and you are already dealing with so much. One step at a time and getting to help from the professionals and it should begin to have some boundaries around all the issues; especially with the dreadful behaviors. Take good care of you as much as can be. (I see your sense of humor in your avatar picture, it had me smiling.)

Please do let us know how you are; we are all here in support of one another and that now includes you too!

J.

vjw

Thank you. As I said earlier in a post, my stomach is in a constant knot and my emotions are right on the surface so it doesn't take much for me to react.

We do have a Trust, and I agree it would be a good idea to see an Elder Law Attorney and have it reviewed.

Sent in for a change of medication for Seroquel and waiting for approval. Neurologist had already discussed it with me before.

I appreciate everyone's kind words.

M1

Keep us posted how he does. My partner has been on Seroquel at a fairly low dose (50 mg at bedtime) for nearly 18 months and does very well with it, no side effects. Helped tremendously with sleep fragmentation.

Lgb35

Are you taking care of yourself? I have been told repeatedly to put my oxygen mask on first. I have gone on medication myself for anxiety and depression. I feel like it has helped with the knot in my stomach. This is a difficult journey we are on with a lot of unknowns in our lives.

take care of yourself and stay with us ❤️🙏🏼

chochee Creed

https://alzconnected.org/discussion/comment/177050#Comment_177050

I'm taking care of myself as best as I can I'm not able to sleep because I can't find out how my husband is doing and it's driving me crazy I wish they would just let me know how he is everyone says I was mean to him but I'm the one that took care of him people where I live can tell you I was never mean to him the vascular dementia has really changed him i miss him so bad but I know I can't give him the care he needs and deserve

Ed1937

Chochee, I will copy your post, and start a new discussion with it because you will probably not get a lot of replies when you post on another ongoing thread that is about to die.