My DH called me a name today...

SDianeL

This morning my DH called me a b**ch. I'm so angry & sad. Not at him but at the disease and disappointed in myself that I lost my temper with him. He was diagnosed 2 years ago with frontal memory loss unknown type. They can't do an MRI because he has leads in his heart from triple heart bypass in 2015. The VA won't do a PET scan due to cost. Besides what difference would it make? There is no treatment or cure. His current symptoms: he can't find words & gets upset with me because I can't figure out what he's trying to say. He isn't logical so you can't reason with him. He has no sympathy or empathy and no sense of humor. He doesn't like many foods he used to like so fixing meals is a challenge that changes daily. I can't go in the bathroom by myself, he walks in. Afraid to lock the door in case he needs me. He won't shower. When I say it's shower day, he screams at me that he will take a shower when he's f**king ready to take it. I do have a caregiver coming one afternoon a week which helps. I can now get caught up on all my doctors appointments & eye exam that I have been putting off for 2 years. I did read the book "The 36 Hour Day" and it has helped but nobody understands until they are going through it with a loved one. We don't take one day at a time... we take one minute at a time. Thank goodness for this forum. Please pray for my strength to help him.

Ed1937

Diane, I'm sorry you have to deal with this now. Unfortunately this is not uncommon, and it could get much worse with the name calling.

You have to be easy on yourself. This is something none of us wants to hear, but we're human, so losing control of our words is just something that happens. Then we try to do better next time. I wish there were easy fixes for dementia behaviors, but I think the best we can do is ask for suggestions when things get out of hand. Sometimes medications are the answer, sometimes not. The forum is a good place to get support and understanding when you need it.

Joydean

Diane I’m sorry you are having to go through this. It’s never easy to hear your love one calling you hateful names. Like Mr Ed said meds sometimes can help. I know they helped my dh. For way too many years we went through what you are doing now, I just say this because if you make it through this horrible stage there will be different ones to come. My dh no longer calls me names but now I can’t get out of his sight. This is a horrible disease so you have to take care of yourself. I wish all the best for you!

Jeanne C.

Sending you warm thoughts. I'm sorry this is happening.

I've dealt with this. Before his FTD kicked into high gear, I had probably heard my husband curse a dozen times in our 20+ years together. While we were still working on getting a diagnosis and plan of care, he called me all kinds of expletives. Really horrible things. Words I had never heard him say.

He now takes anti-psychotic and anti-anxiety meds. I know meds aren't necessarily the right path for every pwd, but it's certainly worth discussing with his doc. It has toned down many behaviors. And he's back to saying fake curses like "shazbot."

Drapper

I empathize with you. My husband has recently called me some pretty bad names too. I also have felt very sorry when I reacted back. Forgive yourself. There’s just so much one can take sometimes hard to separate the disease from the person in the moment

I have been trying the medication route as suggested, but have not yet found the ones that work. I am going to continue that route.

i also have one afternoon a week where I am free. I try to get together with a friend , in addition to the dr appts. Sometimes it makes me sadder as I realize what I am missing out on the other days of the week.

I wish you peace

mrahope

I just want you to know you are not alone. My spouse often screams at me when he gets angry. One day a week or two ago we were in a parking lot and he called me a "stupid sh*t" because HE dropped some bags of groceries. It's soul crushing, when your partner of 40+ years becomes someone you can't reason with.

mrahope

Buggsroo

Diane, I have been called everything in the book. Believe me you start to just ignore the bad language because it is the disease speaking. At first my reaction was visceral and I gave it right back, but then realized how pointless it was.

I hope with time and caregivers you can get more of your life back.

ghphotog

My DW went from pleading with my every day for years not to leave her and I would hug her so very tight as I promised over and over that I would never leave her then almost overnight telling me every day to "get my fat ugly face the hell out of here before I call the cops!'

Just another phase to navigate.

CStrope

SDianneL and Jeanne C I feel we all got shoved on the same lifeboat! My DH also has FTD and acts just like your husbands. I'm often a F-ing B@&ch.

I'm struggling this week to decide if it is time to place him. I don't know if his progression has gotten to a point that I need to, or if my tolerance to deal with everything has just reached the breaking point. I work full time from home while trying to appease his every little want and need. It is not easy or fun.

Can I ask what medications your husbands are currently on?

We started with Memantine and Aricept, along with Citalopram. Then when the doc finally decided it was FTD we took him off those and started with Seroquel that eventually was switched to Risperodone. The Risperodone made him very anxious so we went back to Seroquel. Now he's had extreme constipation so I took him off Seroquel. I've put him back onnthe Citalopram, but I just feel like there has to be something more to help him.

Jeanne C.

@CStrope risperidone and escitalopram. He had been on trazodone but it gave him crazy nightmares.

Drapper

My husband was on lexapro, which made him more anxious. Then Seroquel ER , which seemed to make him too tired and foggy. A new neurologist has him on Zoloft and Ativan as needed. Still undecided. The Ativan definitely works for a cute anxiety episodes.

CStrope

@Jeanne C. the risperidone made my hubby so anxious

@Drapper the Seroquel made my husband too foggy too, he was wandering into the wrong bedrooms in the middle of the night and urinating in the most random places. I was not a fan of waking up to those messes in the morning

SDianeL

https://alzconnected.org/discussion/comment/174127#Comment_174127

Cstrope: I know it's a very difficult decision to decide when to place your DH in care. It breaks my heart to even think of doing that. The Neurologists at the VA are useless. I finally told them we won't be coming in to the office anymore and they can call me or do a video conference every 6 months as going to see them is a waste of time and energy. The only medication they put him on is Memantine and she said B-12 "might" help but I can't see that it's helping. It's supposed to increase their focus but no difference. He's already getting confused at night and going into the closet instead of going to the bathroom. He's done that twice. The first time he wet himself and said "he got lost" the second time I heard him and called to him and he went to the bathroom. Night before last he went to the bathroom and came back, jumped back out of bed and started looking for something but he couldn't tell me what. He couldn't think of the word. He was so upset. I told him he was having a dream and to go back to sleep, He got back in bed and sadly said "I'm not looking for anything am I?" I said no I didn't think so. He was almost crying and said "I'm sorry I'm such a mess"... it broke my heart. I have talked to many people who say the meds just make them zombies and don't help the behavior unless they are violent. So I'm going to wait as long as possible before I go the meds route. I'd rather him curse at me than be a zombie. My sister also has dementia and same results. No benefit but on the meds she wants to sleep all the time.

CStrope

@SDianeL remember if they do ultimately diagnose him with FTD the Memantine is useless and may even make symptoms worse

SDianeL

CStrope: they won't be able to diagnose him with FTD. He's unable to have an MRI and the only option is a PET scan and that's too costly the VA won't approve it (yet). Thanks for the info. Though. I'll speak to the Neurologist about the Memantine. I really haven't seen any difference.

PookieBlue

Diane, 

You mentioned in another post that you were thinking of stopping your once a week respite care. You said,

    “But now I have nowhere to go and if I went I would feel guilty and it's no fun going by yourself. I'm thinking about cancelling the respite care but afraid to do because it's so difficult to get approved and find a new person. I don't think he would do well at day care.”

Dementia has changed us all through no fault of our own. I think guilt is an emotion that we bring on ourselves and is something we need to conquer so as not to lose ourselves in our LOs dementia. I think if we can focus more on empathy, then the guilt will subside. We want the best for our partner, and we need to acknowledge that we are just as important as they are. If they could reason, they would want happiness for us too. 

I’ve been sole caregiver for my DH for eight or nine years. We also traveled in our RV for many years. I haven’t been able to give that up so I learned everything I could about it and took over all the driving, tow hook up, maintenance, planning, packing, unpacking, etc. I hope I have one or two more trips in me, but I recognize that it is an overwhelming thing for me to do by myself. I used to go to an occasional movie by myself, because he had lost interest. He’s required so much assistance with every little thing lately that I started feeling trapped in a conundrum. Even though I have made numerous adaptations to this life, I still hide some anger and frustration within me. However, he is very susceptible to my mood and reactions so I really try to keep my halo on straight.

I have toured a nearby care center and I can picture a little sparkle in my life from knowing I can share some of my responsibility with others. The husband I previously knew would have reacted negatively if I dropped him off for a bit and left. I’m not sure how he will respond now, but in a few weeks I will be doing just that. I’m not discussing it ahead of time with him.

I’m saying this because the chronicity of caregiving can just wear you out. I think you may start relying more and more on your afternoon off just to step outside the situation for a little bit and make some kind of life for yourself.

SDianeL

thank you for those words. I needed that today. Tomorrow the caregiver is coming and I'm going to the post office and to have a cup of coffee. Alone. Maybe go to a book store. Something relaxing about browsing in a book store. I can't imagine the next step of dropping him off somewhere. I hope I have the strength to do that when the time comes.

PookieBlue

Diane,

Yep, I’m a little apprehensive about dropping him off. However, I need to know I have options. I’ve been feeling smothered at times and even though I indulge in many things I can do at home (practice my piano, color in adult coloring books (although I am not a snowflake), listen to Yanni and Secret Garden stations which helps us both stay calm), I am always there for his every little need and want. The name calling stage was pretty horrific. I have a large house with plenty of places to isolate myself from him. For the last half a year, his need for my micromanaging him is wearing me out. On the plus side, he has become very affectionate and more cooperative. I do sense a hidden feeling of desperation from him, but when I ask he says he is happy.

Going to the book store is a wonderful way to relax. There used to be a great one nearby, but it closed a few years ago. I experience occasional soothing moments. The other day I was looking up into the expansive beautiful blue sky and watched a flock of birds high up dancing in waves across the sky. They would float forward and then backward with much grace. When they went backwards, the sun would reflect on their white feathers. I felt inner calm and gratitude as I took this all in.

Taking on the full time responsibility of another human adult is indeed daunting. It is hard to not lose ourself in their dementia so finding the right balance is very important. That’s why my next step is Adult Day Care. I’ve been feeling the dementia life is tipping the scales.

Sending Virtual Hugs

Valerie

SDianeL

thank you. Sending hugs for your next step.

13Nuget

My DH has Vascular Dementia and Alzheimer's. He's only 71. I am his only caregiver. He sleeps or rests in bed most of the day. Sometimes he goes for walks. I can usually track him which he doesn't know. He's usually in a decent mood though he does yell at me and tell me to go away. I've gotten used to this. Recently when I went upstairs into our bedroom I found him sitting on the edge of our bed, fully dressed. When I went further into the bathroom I found he had had a huge bowel movement on the edge of our large tub/shower rim on top of towels. He never had even cleaned himself up after it. A week later he was walking around in our bedroom with the lights off. When I came into the room and turned the lights on he peed on himself and was shocked. The next day I came home from grocery shopping and went up to our bedroom to see how he was doing (he's had a bad cold) and he had peed all over the cedar floor of our walk in closet. Never changed his clothes. Found more pee on the tile floor downstairs.. As I was cleaning up the messes he went outside for a walk in his wet boxers. I'm thinking perhaps he is now incontinent. But for 2 days since it hasn't happened. Had him checked for dehydration and UTI both negative. For his dementia he is on Levetiracetam, as he had a seizure years ago, Galantamine and Escitalopram. He's been having more and more delusions/hallucinations such as waking me up at 4 AM yelling that there were snakes under our bed. His doctor thinks he should start on an antipsychotic such as Trazadone or increasing escitalopram or adding memantine. I have been able to leave him alone for several hours at a time as he usually just lays in bed. Sometimes I'll put a DVD on for him if he wants me to. His doctor is concerned about my safety with his increase in delusions/halluncinations. He also won't shower and the smell is getting pretty bad. I checked out several day care places but there is no way he would go. Most participants were females, elderly and slumped in their wheelchairs. The activities that they do he would never attempt. I guess my question is what experience does anyone have with all these medications. There is a black box warning on the Trazadone. I'm also going to look into getting a "companion" 1 - 2 days a week as I don't think I can leave him alone for much longer. Thanks

M1

Welcome to the forum nugent. This is an old discussion thread from last year, you will probably get more responses if you start a new discussion.

your doctor is right to be concerned. incontinence and delusions indicate very advanced dementia, and he should never be left alone, period. He would not be able to handle any emergency (like a housefire). have you researched memory care facilities near you? Or board and care homes that are available in some states?

The atypical antipsychotics that are most helpful are Seroquel and risperdal. Trazodone is an antidepressant frequently used for sleep. Many of these drugs carry black box warnings, but the tradeoff is necessary for quality of life both for the person with dementia and the caregiver.

SDianeL

https://alzconnected.org/discussion/comment/213413#Comment_213413

https://alzconnected.org/discussion/comment/174127#Comment_174127

13Nuget: After my husband was diagnosed, the Nurse came to our home to evaluate us for caregiving help from the VA. She asked my husband what he would do if a fire broke out in our apartment. He was Stage 4 not yet incontinent. He hesitated a long time and then said he would try to put out the fire. Later she asked him again, what else he would do. He said nothing. I never left him alone after that. I had someone come in 4 hours once a week so I could run errands. He resisted at first but by the 3rd time she came, he would ask if "his lady" was coming that day. 6 months ago I had to place him in a Memory Care facility due to my cancer diagnosis. When he became urinary incontinent he became agitated when the staff tried to clean him up. They increased his medication and he now sleeps most of the time. The doctor is going to gradually reduce his medication so he doesn't sleep as much. If he has agitation your safety could be in danger. It may rapidly get worse. I believe my husband was embarrassed about being incontinent & wanted to change his clothes by himself but didn't remember how, so he got upset with the caregiver. People with Alzheimer's can't remember where the bathroom is or how to go to the bathroom and they don't even know they are going. Full time incontinence is coming as are other behaviors. Read the book "The 36 Hour Day" which helped me a lot early on.

SDianeL

@CStrope: My husband is on Risperidone. It helped him until they had to up his dose due to his agitation & aggression toward staff. He's now completely bedridden and only wakes up for meals. He's not communicating much anymore. The doctor is going to start gradually reducing his meds to see if we can find a happy medium. She said do not abruptly stop antipsychotic meds without tapering them off. It could cause serious side effects. Read the book "The 36 Hour Day" which helped me a lot early on. You can search on this forum to find hints for handling incontinence if you choose to care for him at home. I'm 76. I had planned on keeping my DH home as long as I was physically able. I see now that it wouldn't have been that long until I needed full time help or would have no choice but to place him. Heartbreaking. I placed him in a facility that cost $6000 per month in FL until I could move him to a VA facility where he is getting excellent care.

13Nuget

I'm glad you were able to find a good facility. That is such a difficult decision and one I will have to make at some point. I do have that book on my Kindle and haven't really looked at it in years since back then most of it didn't seem to apply to us yet. But I guess it does now. Perhaps it doesn't really matter if he is incontinent or disoriented as the end result is still pretty much the same. I too was planning on keeping him at home with me caring for him as long as possible. I'm 74 and both our kids live on the mainland so I don't have any help.

Looks like Day Care several times a week maybe a lot cheaper than having someone come in but i doubt he'll go. However, the Day Care places informed me that a lot of their clients start off that way and then start looking forward to it. So we shall see. Reminds me of years ago when we would want to go out for dinner with some friends but had to find a babysitter first and the combined cost made it almost not worth it.

He has had a bad cold and I think that inflammation may have added to his disorientation. Of course, I now am coming down with one. His hygiene or lack of it is why I'm getting sick. He'd wipe his runny nose on our towels and whatever. Had to cancel an appointment with a Notary today as I couldn't get him out of bed. He was very combative when I tried. Perhaps I will give the OK to the doctor to prescribe the antipsychotic although not sure if he will take it.

Every day is an adventure of sorts.

M1

Remember you don't have to tell him what the medication is for- make something up. For sleep (which is true), for blood pressure, whatever. There are also liquid forms you can mix in drinks or food.

DTSbuddy

I found a caregiver on Care dot com, to come over a couple afternoons a week. Very helpful to get a break. My DH cannot remember where the toilet is, how to shut doors, including the refrigerator's, how to wash his hands and turn off the water, how to talk intelligibly, etc so he cannot be left alone at all. My DH was wary at first and waved him away, but by the third visit, the caregiver seems to have earned his respect, and it is looking like it will work out. We have to been able to avoid using medications so far. I talk to him, even though I know he does not understand most of it.