What to do?

DISconnected

My wife was diagnosed with early onset 8 years ago. I have been caring for her and have been retired for 4 years. The issues are plenty, but it comes down to what seems to be total dependence on me and doing all she can to alienate my family and friends and to interfere with any hobbies or pastimes I enjoy. She wakes from sleep with a look of total hatred on her face and curses and proclaims she wants no one in her house. She has even gotten out of bed and thrown items to the floor. No one comes to our house any more, so I don't know who she is referring to, but I have reached a point where I can't exist like this and am unsure how to handle her outbursts. I have no life whatsoever now as it is all focused on her and when we try doing something, her confusion and anger disrupts my thinking and turns it into a disorganized fiasco.

DISconnected

There are good times, too of course, but as all advice seems to be to go along and apologize for anything they are upset about, there is no way to avoid being totally occupied with dealing with the disease.

ghphotog

I'm sure others will have better advice but you might speak with a neurologist if you haven't already. I don't know if she is on any kind of medications. All I can offer is from my own experience. My DW was that way for a while, still is on some days, mornings mostly. The neuro put her on Memantine that seems to have taken the edge off. One more thing, some medications don't play nice together and can really exacerbate dementia symptoms such as Amitriptyline and Memantine. One doctor put her on the Amitriptyline and the Neuro put her on Memantine. He said to take her off the A as it would make her worse. Well I didn't listen and a few weeks later she was out of control. I took her off the A and within a week she started calming down.

I know others will say to check for a UTI. Sounds like you've been down this road for a while now and are probably already aware of how a UTI can really make things crazy.

As far as having a life back and doing all the things you used to. . . that might be a while. Try to get some respite such as adult day care. That will give you a break during the week.

loveskitties

Have you reached out to her doctors regarding the situation? There are meds which can be tried to help even out her temperament.

Remember, she is not doing this on purpose. Her brain is broken and it is not unusual for patient to have these kinds of issues.

DISconnected

Yes, the doctor prescribed something to take at bedtime for the fits of rage, but she insists she didn't break or throw things and doesn't need it, refusing to take it. She has been on both memantine and donepezil since she was diagnosed....I was just not sure about daycare or having in home visitation, I know she will react uncontrollably.

SDianeL

My DH is 78 diagnosed 2 years ago and was recently becoming more agitated & angry. The Neurologist put him on memantine and I could see no difference but we left him on it. She said it increases their concentration. She never said it would calm him down. Then she put him on 1/2 tab Risperidone at night which helped him sleep but no difference during the day. They referred him to a Geriatric Psychiatrist to monitor his medications and she increased the Risperidone to add a 1/2 tab in the morning. It took a couple days but he seems to be much more calm. Make a list of her behaviors to take to the doctors and give them the note. I don't talk about his behaviors in front of the doctors as it upsets him and he will deny it. I told him we were going to see the "brain doctors" not a Neurologist or Geri Psychiatrist. I told him the pills were "brain pills" to help his brain. He never once refused to take them. You can't reason with someone whose "reasoner" isn't working. She isn't "doing" anything. Her brain no longer thinks rationally. She's angry at the disease, not at you. Can you get respite care to help so you can have some time to yourself? I told my DH that I needed someone to stay with him while I ran errands and went to my doctor appointments. He reluctantly agreed. The agency Assisting Hands sent a wonderful calm person for 4 hours one afternoon per week. He now calls her "my lady" and he is not angry & agitated with her. I think he only gets that way with me. Maybe they always take it out on their primary caregivers? Who knows. Fib if you have to so she will cooperate more. You can also call the 24 hour ALZ helpline at 800.272.3900

Iris L.

https://alzconnected.org/discussion/comment/182292#Comment_182292

You seem to be still trying to reason with your DW and trying to get her to cooperate. She has anosognosia. She truly believes she is fine and sees no need for doctors, medications or changes in her household routine. You will have to learn to use the work-arounds that the members talk about. You cannot go about this in a straight-forward manner any more.

As far as medications, some can be crushed and added to food or coffee. Ask the doctor and pharmacist.

Iris

jfkoc

Reality. Clearly you and your wife no longer are on the same page and she can no longer change.

Drugs? Yes. Is your wife being seen by a neurologist? If so please consider drugs and I would include medical marijuana in the conversation.

You so need to make changes!!!!!

DISconnected

We were seeing a neurologist, but he was just asking how she was doing each visit and was really only interested in getting her into a research program, which she wanted no part of. She just now sees the family doctor. I appreciate all the input. I have considered the work-arounds, but her paranoia makes that difficult. She already accuses me of a lot of things that don't make sense.

JeriLynn66

GeriPsych physicians available in your area? If so, they may be more helpful with medication recommendations

subversivevegan

For us, medication was the answer. I started tracking my LO's behaviors and moods daily (just a symbol for "difficult but manageable", "easy" and "impossible" in the calendar). When we visited her Doc, I tallied and shared the results. He "got it" immediately. Being able to quantify behaviors/moods was the key for the Doctor to truly understand; he prescribed a low dose of Seroquel, which has been a game changer. She is 10x less stressed and far happier/more like "herself".

The Cavalry isn't coming, but medication made a significant improvement for both of us.

I wish you peace.

sandwichone123

I tried a day care with my dh, but he was angry every time I tried it. So I placed him in assisted living where I don't have to take him there every day. He is so much happier in a setting that is controlled and built around his needs, and I can be the "happy times" visitor and take him out without being the person setting limits or trying to deal with reality around him.

Jessy

Totally understand you. Ask your MD regarding Methylene Blue. He/she should be able to help you find the right dose for her. Check on Dr. GOnzalez-Lima, he is a guru on this. He has research on this along with many other scientist.

My mother has been on it since Easter. She was just like your wife. MB helps to regulate neurotransmitters. Oxygenate mitochondria and improve sleep. Mom is now sleeping about 9 hours at night with no sleep aid (discontinued). Eating well. Very social. She is also on brain peptides which help as neuroprotection of new neurons being formed (yes, its possible).

Hoping for all the best.