Does aggression and agitation fade as the disease progresses?

LindaLouise

My DH is 68 - Alz diagnosis after PET scan and MRI and testing - has been highly agitated for months. I had locks on all our doors and gates as he was constantly trying to get out and would become very angry with me as his "jailer". He could have moments where he was sweet, but after needing 911 to help get him inside after he escaped, and weeks of no sleep and refusal to take any medications, my kids finally sat me down and said I needed to get him help. The final straw was when he got physically aggressive and angrily pushed both me and our small dog. I was really scared. I placed him in a near by MC three weeks ago and go every day. He never asks to leave with me, and doesn't seem surprised when I show up. He is always happy to see our small dog. It hasn't been easy he still doesn't sleep, sometimes doesn't eat, walks constantly and can't participate in any of the activities as his cognition is very low - 5/30 on MoCa. We are trying different medications to try to calm him (Seroquel, anti-anxiety med lexapro) and some days are better then others. The MC staff is usually able to get him to take the medications. I have been able to sleep for the first time in months, am able to run errands without the fear of getting him in/out of the car without him running off - but am still haunted by terrible guilt and sadness. I thought I would keep him with me until the end, but even though I'll spend all my savings, I didn't see any way the two of us could survive. I'm wondering now if there is anyone who experienced a spouse with agitation and aggression and then saw them move into a calmer state of mind as the disease progressed? I think the sudden departure of my DH and for the first time living alone has proven a bit of a shock and I'm trying to sort out my path from here. Sorry for sounding a bit disjointed, but that's the way my mind is working right now!

M1

welcome to the forum. The medication probably has more to do with controlling the aggression and agitation than disease progression does. The controlled environment probably also helps. There might be a time in the distant future when you could try tapering off medications, but it’s probably very remote and iffy even then. Sorry it’s so difficult, a lot of us are in the same boat.

SDianeL

https://alzconnected.org/discussion/69568/does-aggression-and-agitation-fade-as-the-disease-progresses

I had also planned to keep my DH (now 79) at home with me until I could no longer physically do so, however, in December I was diagnosed with a rare aggressive breast cancer and he didn't have any other family members able to care for him, so I had no choice but to place him in a Memory Care facility. It was heartbreaking. I moved in with my daughter. I finished chemo & had surgery 4/25 and am just now feeling the guilt & grief of him being away from me. Once he became urinary incontinent he became agitated & aggressive toward staff members & they had to medicate him. He became bedridden & fully incontinent due to the medication and noncommunicative . They are now gradually reducing his meds to see if they can find a happy medium. The nurse said that this may be the "new normal" — he's in late stage 6. I'm afraid the next stage will be when the agitation & aggression are gone but that he won't communicate at all. It breaks my heart. I'm going to attend a support group meeting at his facility and meet some of the wives who are going through this. I'm with my daughter & her husband but I feel alone and don't want to go anywhere or do anything without him. I know I need to deal with this but it's so hard. Sending hugs.

mrahope

FWIW, I think it's less due to disease progression than it is to having a controlled, regular environment. My DH has now been in MC for almost two months, and while I don't visit often, at each visit he has seemed as though he is peaceful and settling in well. FWIW, before dementia, DH was a clinical and forensic psychologist and last time we visited he told us he "didn't have dementia" and "Had made many suggestions" about better care for the people at his facility. He thinks he's working there as a psychologist and that seems to make him feel productive and useful. Staff have simply allowed these beliefs to flourish as I was unable to do.

GiGi1963

My DH was aggressive towards me and our small dog even though he loved her very much. Incontinence and aggression made me realize I could not handle this phase and keep my health. He was aggressive in MC for a few months, getting into scuffs with other men residents. Medication has calmed him. He also spends his day "working" in the facility and is much happier than being home.

Vitruvius

My DW is well past this stage now, but when she was at home with me she was never violent or aggressive but she was very agitated, anxious and confused. I believe the environment of our home created in her a familiarity with a routine she could no longer comprehend. I believe she always felt she should be doing the "usual" chores and hobbies that the house sparked some recognition of, but she could no longer understand. She would constantly move things around, and also put them in car with the need to go somewhere she could never define.

When I had to move her to a MCF, she immediately calmed down and enjoyed the simple activities, routine and socializing that the MCF created. She is now in late Stage 7, and barely with us. I know it might be possible to bring her home now, but when I visit I am reminded of how much 24/7 care she requires with hoyer lifts and two person assists, the preparation of carefully selected puréed foods, the list goes on. I really know for certain that she is in the best place for her…and me.

harshedbuzz

@LindaLouise

I feel like my dad moved away from the agitation and aggression towards the end. He progressed rapidly at the end. Planning ahead for a potential transition to MC, he had a visit with his geripsych at which he scored surprisingly well on MoCA (around 23-24) about 6 months before he died.

Mom wanted to keep him at home, but his behavior made that unsafe. We didn't have the manic presentation you are describing, but rather aggression and murder-suicide ideation so he was out-the-door. This aggressiveness towards mom and myself continued in MC for about a month when he seemed to progress to the next stage— his delusions were just as crazy but quite pleasant for him and he became warm and affectionate during the final 2 weeks of his life.

Reisberg (of the Reisberg 7 Stages of Dementia fame) explains dementia as a retrogenesis— a kind of rewinding to an early stage of development. In dad's case, at the end of life he became more like the sweet little boy his ancient aunties used to describe.

HB

Jo C.

Hello LindaLouise; you are a loving and caring person and you are doing the best that can be done under the circumstances with the dynamics as they exist.

Each person with dementia is different. What would cause my LO issues or to be calmer would in all probability not be the same with someone else. It has been noted by many caregivers, that their Loved Ones (LOs) became more calm in the facility setting. Less triggers than there are in the home setting, more solid routine and environment with few changes, etc. One size does not fit all, time will tell.

Though many of us speak of "guilt" at the necessity of placing of our LO; another Member taught me to use the word, "regret, and not guilt. If one thinks of it, that is true. The regret for the necessity of placement is very strong - unavoidable does not include a guilt aspect.

No matter the words, I found that not only my LO needed a period of adaptation to placement, I also needed to adapt. No abandonment involved, doing something "FOR" our LO, not "TO" them. Much calmer, enabling me to be a loving family member and not a dreadfully exhausted person often short of patience due to said exhaustion on a 24 hour basis.

It can be difficult in the beginning, but when change occurs, we need time to do the adapting and to see the positive results. May this change in circumstances bring positives for the both of you. If behavioral issues continue, it may be a good idea to have the physician dementia specialist involved if one is not already active in the assessing and prescribing. Lastly, do have your LO checked for a "silent" UTI. Very often, significant negative changes in behavior can be triggered by the "silent" UTI which will persist until treated. Worth taking a look.

Best wishes being sent your way,

J.

ghphotog

I placed my DW in MC several months ago. She is very severe cognitively speaking so she doesn't understand much of the activities.
Others know more about meds to control agitation than I do but my DW is on Mementine and Zoloft. I think Zoloft helps a little but when I visit her and ask the staff how she is doing emotionally they say she can get very agitated but then will apologize to them. She is a sweet natured woman fighting a disease that's stripping her of all self control but she instinctively knows she didn't mean to be that way. It's very heartbreaking for sure. She was agitated a lot living at home and after an outburst she would say "I'm sorry".
She always wants to "go home" and "can we go now?" "I don't belong here". . .
I feel so bad for her that I'm tempted every day to bring her home but then remember she said all of the same things relentlessly even when she was home. It would be no different at "home" than in MC but at least I'm not dying anymore trying to care for her but I still think about it.

LindaLouise

Thank you all so much for your responses. You have all helped me to be able to breathe - and to not feel like I am so alone in experiencing these emotions and feelings. I'm working on reframing my guilty feelings into regretful ones - that seems to capture the sadness and loneliness I feel and move me away from the crushing guilt. When I first took out one plate for dinner, and realized I would not be taking out two again, I think the whole enormity of the loss of my DH of 47 years hit with a vengeance. The relief of having him not under my constant watch allowed the grief a way into my heart and head, and processing all of that is just going to take time. What would I do without all of you!

M1

it does take lots and lots of time Linda. And the grief can hit out of the blue for the littlest things, like the solo plate. We’ve recently started our third year in MC and just recently went on hospice after a particularly bad fall. Hopefully you will establish a new routine eventually and may have some good days yet, they are precious when they happen. And absolutely it’s critical that you feel safe in your own home. But it remains a very difficult and painful journey. I look forward to the time when it’s over and I can rest assured that she is no longer suffering.

Paris20

I haven’t posted here in quite awhile but when I saw this question, I just had to answer. In my experience, yes, the agitation and aggressiveness eventually calm down. My 81 year old husband was diagnosed with AD in 2015. He had a paralyzing stroke two years ago. He’s been in a skilled nursing facility for over two years. He has been fading away very slowly. As recently as a year or two ago, he was very difficult to deal with. He was verbally and sometimes physically aggressive. He’s been on all sorts of meds. I don’t know if they helped. They might have contributed to his stroke.

Duting the past year or so he’s calmed down, ironically too much. He’s lost his ability to put thoughts and sentences together. His voice is practically inaudible. He is cognitively in bad shape but he’s affectionate and calm. This is a drastic change from his behavior of just a few years ago. He was so bad then that some of the aides did not want to deal with him. Now, however, he’s mellow but a bit distant. In the meantime, I’ve been able to get my life back.