Anger - not new but becoming absolutely untenable...
Fair warning: This is just a ramble and not particularly well written but I am desperate.
My husband is hovering somewhere between the late early and early middle stage of Alzheimer's I'm guessing. I've seen everything from 3 to 7 stages or more of this agonizing disease and, frankly, I'm not sure the stage matters as there are so many different ways this illness manifests itself among so many people. He is able to care for himself and still does things like his own laundry and loading the dishwasher. Believe it or not he still drives but less so as I insist on driving most of the time. With our most recent visit with his neurologist it was recommended that he take a test to determine if he could remain driving which he refuses. He can't handle money as numbers are beyond his comprehension. That, in and of itself, is a tragedy for him as he always prided himself on how he dealt with the finances. But I manage everything else for him and for our household. I'm essentially doing everything and I mean everything other than the dishes and his laundry.
As try to explain about all the little things that are slipping away that you all already know about from your own experiences, it is really his anger I am having such a hard time with. His anger borders on emotional abuse. Actually it is emotional abuse but for his diagnosis. We have a 31 year history of a tumultuous marriage but never like this. Also, I've come to realize (through my own therapy during the last 10 years) that he is a very controlling man. So, I suppose it can't be a surprise that his anger has grown as he loses control of so much. But it is nasty and frightening. I don't think he would ever hurt me but he has tried to take my phone away or my computer away. I've actually called the police on him twice — not because of fear of physical abuse — but more because I needed someone with more (in his eyes) authority than I to tell him he had to leave me alone, could't follow me from room to room, had to give me space if I asked for it. This, after several nights sleeping in the bathroom with the door locked. I've gone out to get away several times now just for my own preservation.
And I feel stuck. I am 70 years old and I don't want to waste my precious time. I just finished with a serious bout of uterine cancer myself and I'm lucky to feel so good now. Insofar as being a caregiver, I do everything that has been recommended among the many organizations and publications and notifications about caregiver self care. And, my husband is on meds for his behavior that is monitored carefully by a psychiatrist. He even sees a counselor every other week though the therapist has no experience with dementia patients and appears more like "rent a friend." He lacks any socialization which is really unfortunate as he always loved being among people but I cannot get him to try and meet any "new" people. I've tried our having dinner with acquaintances of mine I know through the charitable organizations I am involved with. That was a failure. I don't try anymore. I tried to encourage him to get involved with senior activities but in his mind that is not him yet. He is 73 and thinks everyone else is far older than he. Tried getting him involved with an MCI group that we could participate in = no interest. What makes this even more difficult is he has no hobbies or interests - never developed any. The only thing he did for most of his life was work.
Also, my husband has had a series of losses in the past years that I am not insensitive to: fired from his job and he is the kind of person who was truly defined by a career; running which had to stop as he fell twice a few months ago and a year a half ago resulting in traumatic tooth loss requiring implants; and finally, the Alzheimer's diagnosis after 3 prior neurologists over the past few years telling him nothing was wrong though he knew otherwise.
I want to be more compassionate now with him but it is so hard to do with him just being so really awful with a screaming rage continually about everything both real and imagined (he insists I said things I never did). I shouldn't argue back with him but sometimes I do. Rational responses don't matter. He just gets angrier and he really just gets mean and loud and scary and unrelenting. He doesn't stop. He has intentionally woken me up to go on a rant.
What I am saying is I simply cannot handle this anymore. And there is no relief. I know there is someone on the forum who wrote a missive about how the cavalry is not coming to save anyone. So, what do I do, except - write this out of sheer despair and deep loneliness?
Comments
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Welcome to the forum, I am so sorry you are facing this. Unfortunately you can’t assume that he won’t hurt you. Your days of being able to care for him at home may be coming to an end.
there are many old discussion threads on this topic if you can find them. You may be able to document his rants by recording them; his docs need to know how threatened you feel. He may need to be hospitalized and go straight from the hospital to memory care; this is what happened with my partner so I’ve been in a similar situation. In the meantime, always have your cellphone with you and identify a safe room in your house that you can lock from the inside. Pack a bag and put it in the trunk of your car in case you need to leave abruptly.I would have a very low threshold for calling 911 and having him escorted to the emergency room. Your safety is paramount.
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Thank you. Your message actually helps me in validating my own feelings about what is happening. Although he seems so capable in many ways, the aggressive behavior is concerning. I do keep my phone with me at all times and a "go-bag" in my car is a great idea.
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His "normal" self would never hurt you but his "dementia" self may indeed hurt you. Sounds like he has crossed the line verbally and it is likely that he will very soon hurt you physically. Let his psychiatrist know your concerns and if you feel threatened, call 911 and have him transported to ED. Be careful!
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Laura, the behaviors that you mention are characteristics of dementia: shadowing, loss of social filters, no initiation or interest in activities, and especially anosognosia, the lack of awareness. None of these characteristics will respond to talk therapy or calling the police.
What meds is the psychiatrist prescribing? If they are benzodiazepines, such as Valium or Ativan, they could be increasing his restlessness and agitation, because they have a paradoxical effect in older adults.
Suggestions: Read more about what dementia actually is. You cannot stop it or change it. What you can do is modify the environment by simplifying and removing triggers. You can learn Validation Therapy so that you will not get drawn into explanations and trying to change what he is doing.
Seek a geriatric psychiatrist who knows about treating a person with dementia.
Stop the driving. Don't tell him he can't drive, think up a fiblet. Read about how other members have handled this.
Stop asking him questions or what he wants to do. He doesn't know, because his mind gets confused by everything yhst you say. Questions are triggering.
There is a group for new members with great information. Read a lot of threads and you can learn from the experienced members. Dementia caregiving is NOT intuitive, it is seemingly like the opposite of what you would expect.
Iris
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Hi Laura…
Unfortunately, but perhaps reassuring, is the fact that what you are posting is common.
Our lives get turned completely around by dementia.
Have you been able to read any books re caring for a PWD yet?
What does the neurologist have to say when you share what is going on?
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Laura, are you able to bring anyone into your home to give you some respite? Though I haven't experienced the anger issues with DW that you describe, I have certainly felt the despair and loneliness. I have a CNA come in 3 times a week for a 1/2 day so that I can just get away and take care of myself for a while. If you are able to do this, I think it will help you immensely. If not a professional caregiver, maybe family, friends, church group, or whomever cares about you and is willing to help. I'm so sorry you are in such a difficult position. Know that you are not alone. Please take actions necessary to care for yourself. There is likely a caregiver support group in your area that could also help you.
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I think it's a good idea to have an escape plan. This may mean you leaving the home in order to seek help, or have him removed from the home. I'm sorry you are going through this. I can relate to some of it, and understand the discouragement.
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Please keep yourself safe - you're important.
My husband (65, FTDbv) was very angry, aggressive, and volatile. Meds did a lot to help with behaviors. It took a crisis and hospitalization to get him on the right meds. Be ready to call 911 if he's aggressive and ask to have him taken to ER and then for a geripsych evaluation - a hospitalization may be what it takes to get him on the right meds. This phrase is very important: I cannot safely care for him at home. And maybe from there he needs to go to a memory care facility, if that's what is best for BOTH of you.
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so sorry you are going through this. We totally understand. Although your marriage has been tumultuous the current behavior is due to disease of the brain and you can’t reason with someone whose reasoner is broken. A therapist does no good in my opinion. Please read the book “The 36 Hour Day” which helped me after my husbands diagnosis. He’s shadowing you because his world is falling apart and you are his anchor. He can’t leave you alone ever. He should not be driving. If ge has an accident you could be sued and lose everything. Disable the car and have it towed or have a family member come get it making up a fib to get it done. And as others have said, have a safe place and plan if you fear for your safety.
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Dear LauraCD, I truly feel your pain and suffering. I deal with alot of … and handle almost everything, but I know I could not handle abuse of any kind. One my DH started with some aggression, I reached out to the doctor and he prescribed meds. When he started packing and wandering at night, the doctor helped with meds. The meds don't necessarily stop the urge to pack but it tamped down the anxiety driving it and made the situation manageable. My suggestion is that you explain to the psych that you need him/her to medicate him for the aggression. Physicians are not miracle-workers but I believe they will do their best for both of you.
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My HWD is also shadowing to the point of velcro. I can't shower unless someone sits with him and constantly reassures him I will be back soon. The loss of a sense of self is one of the biggest casualties of this caretaking journey.
HWD is a toddler (impulsivity, tantrums,lack of decision making abilities etc) but worse because he also remembers having adult autonomy, and he now can do next to nothing.
Meds help but it takes a while to get the proper mix and dose. It is getting better, but every time I think we have it we need to tweak his schedule. It never ends.
Others have offered great advice. I'm mostly letting you know that, yes, this is terrible and, no, you are not alone in hating this.
I hope something else takes him out instead of the long slog of Alzheimer's
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Just adding that you are definitely not alone in this. My DH always had a quick temper and somewhat of a tendency to anger, but with the onset of dementia he really couldn't control it very much at all. It got so bad that I slept with the keys under my pillow, the door locked and my phone within arm's reach. He began to throw small objects and several times managed to call ride share services and try to leave. One time he succeeded and was gone for three hours, telling us he'd gone to the airport even though we tracked his phone to the train station. It was hair-raising, and these were the kinds of behaviors that made me see that I could no longer either keep him safe or tolerate what amounted to "emotional abuse", even though with dementia this was not purposeful behavior as the rest of us know it. He's now in MC and I feel safe again and no longer worried about his safety.
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Please if possible record his fits and rants. If he like another of alz. He can show case when he thinks nessary. Show them to the Dr.
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What is ED? I am afraid if I call 911 that my husband will be sent to jail. He is so out of control at times. One minute he is fairly normal but has an extremely short fuse and goes into such angry fits it is very scary.
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It is my understanding that if the police were to come they could arrange for transport to an Emergency Department where minimally his meds would be reviewed and perhaps he would be placed in a facility for evaluation. This would all be for your safety (and his) and it would be out of his hands. His behavior would determine how best this could be handled. I am sure there are others here who have more information on this.
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ED = emergency department
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Thank you. I may just have no choice. At least by being evaluated maybe they could get him on medication to calm him down. Is memory care covered by insurance?
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I would be afraid that he would showboat successfully and be sent home…then he would really be angry & even more dangerous.
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I just responded on another thread. You have to Insist on psychiatric evaluation and refuse to take them home, citing safety and inability to care for them. Over and over and over. This is where having power of attorney really helps. Those of you who have not consulted an attorney need to do so (look at nelf.org for lists by location) and if your "loved one" refuses you seek guardianship. Do not feel bad, dementia is not an excuse for spousal abuse and you need to protect yourself. There's no such thing as "too early for memory care" in these situations. I have walked this road and know whereof i speak.
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I just had to place my husband in MC for this reason. He was starting to get physical spit in my face, slapped me across my back, slapped my arm down when I was trying to keep him from screaming in my face. I was barricading my door at night and sleeping in the closet. I finally called the police and their crisis team connected me with a gerri/psyc hospital that adjusted his meds and advised me that it was too dangerous to bring him home. Less than a week so far and he is not happy.
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I recorded the fits. It was very helpful. I also listen to them when I feel guilty for putting him in MC.
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You are not alone. I just recently started getting a caregiver because I really really needed a break. The verbal abuse - yelling, screaming, name calling is just awful at times. Sometimes I just get in my car and go away for a cup of coffee for 30 minutes and he's totally forgotten what he's angry about. Although he call me names daily, he tells the caregiver he would never call me those names. We've just started a new for him medication and I hope it helps. This truly is a long journey & I'm very sad that that there are very few good moments any more. It is too difficult to travel with him, and I need to find a way to get more time with my grandson. I cry a lot. I keep reciting the Serenity Prayer - "God, grant me the serenity to accept the things I cannot change, the courage to change the things I can, and the wisdom to know the difference". I'm trying to find ways to change how i react when he yells and screams trying not to yell back; walking away from the horrible situation. Trying to change the subject on whatever he is angry about. It's been hard for me to take care of myself, but I'm trying to think about my adult kids and what this situation is doing to them because I'm not there for them. Take care of yourself. You are not alone.
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i concur with M1. I am in process of placing my DH in a home. You just told my story. I understand. My friends elderly mother would get a knife and threaten her own kids. They don’t know what they are doing in the state of this horrible disease. Protect you and find a solution for your DH. All the very best to you❤️🙏
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Memory care is not covered by insurance.
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I applaud the fact you still have your partner living at home. I had to place my BH in a very expensive but wonderful memory care facility. I used up most of our money, sold his life insurance policies, did a go fund me page, sold valuables, etc. My DH got alz at age 59. Once settled in memory care he got a terrible case of COVID. Almost died. After 30 days in ICU he then went to California Rehab where he spent 5 months, got off the ventilator, had to learn to talk, eat, move, walk. So by the time he “recovered” from COVID he was not even close to his baseline. It’s been 5 years and he’s, in my opinion, declining a little bit each day. He knows who I am. I am grateful to see his smile. I developed some mental issues and physical issues which is obvious to me that it’s mostly from stress. Jim and I were so happy for the 24 years we were together. No kids. I live all alone in big house I’m preparing to sell. Getting rid of all the stuff - *$%&. Right now I’m mostly feeling alone and lonely and depressed. And sometimes angry. Oh, my self esteem seems to be at a very low point. I’m 74. Once I sell the house (and clear up the FTB and IRS messes I got myself into) I have no idea where to move. I really don’t know what to do with myself…….become a nun?………….
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I had to do this also last fall. I was worried nobody would listen. Thankfully it’s a quieter year this year (if you want to call it that)
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Laura,
This is seems just like what I was going through. I was sleeping in my closet with pepper spray and was afraid of him hitting me eventually. He also accused me of affairs, yet I'm always home. I ended up taking him the a psych ward for alzemhemiers patients with anger issues. He spent ten days there where they adjusted his meds. I moved him to one MC unit, but it was too restrictive. I moved him to a place that just specializes in memory care. He is not happy, I'm feel terrible guilt, but I have no choice. Get help.
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Commonly Used Abbreviations
DH = Dear Husband
DW= Dear Wife, Darling Wife
LO = Loved One
ES = Early Stage
EO = Early Onset
FTD = Frontotemporal Dementia
VD = Vascular Dementia
MC = Memory Care
AL = Assisted Living
POA = Power of Attorney
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