I want out!
Most of this is just a vent, but I really don't want to do this any longer. My HWD (I can't even call him my DH now) has become so mean. We recently visited with my sister and her husband along with other family members. My HWD has been telling me that he married the wrong sister! He says my sister is smarter, thinner, prettier, and that he is sure she would have sex with him every day! That really is the root of the problem - sex. He can't perform any longer due to age and medication issues, so he wants to do oral sex on me every day. I know this is a lot of TMI, but it is just terrible for me. Even if I wanted to, I am now 74 and my tissues are much more fragile now and frequency causes me pain and discomfort. And, he is so ugly to me why would I even want to be intimate? It is a constant battle to keep him off the subject and busy doing something else. He bothers me all night long and I am not getting enough sleep. We were at the mall on our trip, and he went into Victoria's secret and began fingering the crotch of the mannequin and was asked to leave the store. I am trying to get him an appointment with a geri-psych, but they are booking in November now, and haven't even finished reviewing his records, so it will likely not be until December. Right now I actually despise him and cringe when he even touches me. It is too soon for a memory care placement according to his doctors. He can do all of the ADL's and can showtime with the best of them when he is in the company of others for a short time. But once we are behind closed doors, he begins berating me for being a bad wife and says his wedding ring means I have to do anything he wants. I am crying all the time, and I can't sleep. This is just awful. I could use some suggestions if anyone has some. And, thanks for listening to me rant! Without all of you, I don't know what I would do!
Comments
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Have you tried recording him or taking videos of his behavior? I would think (or hope) that your GP would be able to prescribe something for this type of behavior. Even an online psychiatrist? I just can’t imagine how horrible this would be. Do you have another bedroom you could go to with a door that locks? I am so sorry you are going through this.
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I am sure others will be along shortly with better suggestions. I would try calling his internist or family doc to see if they are willing to start him on antidepressants and seroquel. You are in an impossible situation and waiting until December is not a viable option. He is likely to escalate his behavior and may even become violent. I would have a very low threshold to call 911 and have him transported to the ER.
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I’m asking the following because I really don’t know the answers. Do MCs require a doctor’s agreement before accepting a patient? Or do they just require a medical history to ensure the resident doesn’t need more medical care than they provide? Or is the POA one of the ones where the doctor has to declare him incompetent before the POA takes affect? In other words… do you really need the doctor on board to place him in an MC?
I would move to the guest room and put a lock on the door. Second, follow LT’s safety instructions ( someone who has that link please post it). Phone, keys, ID, money etc accessible to you at all times so you can escape if needed. Third- if you tell him no and he becomes verbally or physically abusive, use that phone to call 911. Have him transported to an ER and repeat ‘ it’s not safe for him or me for him to be released to me’.
That wedding ring is no longer considered a legal right to force your wife into sex of any kind6 -
This sounds like a real nightmare. I don't blame you for wanting to leave!
Do you have a patient portal to contact your husband's GP? There are meds he/she can prescribe for hypersexuality.
Edit to add: Don't hesitate to call the police. You can then have them call an ambulance for your husband.
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Thank you for your replies and suggestions. Unfortunately, we don't have a guest room - just a den used as an office. I could get a rollaway bed, though, and sleep in it and lock the door. I am afraid that a locked door would be an invitation to kick it down, though. I have a call into his doctor now to talk about some kind of medication to calm him down. He is very agitated all the time. In his current state of mind, any memory care would not accept him. I won't hesitate to call 911 if he gets violent, and since we live in a retirement community, we also have security I can call who could probably get here quicker. It is just such an awful way to live and I can't imagine doing it much longer. I don't think I need to video his behavior as our doctor has a lot of experience with dementia patients and even warned me that violence and aggression are often part of the disease progression. I imagine I need some therapy for myself, but I can't think of a way to make that happen. He can't be left alone for long, and if I was online he would be bothering me every second. One thing I will not do is give into his sexual demands just to placate him. That may be what ends this - if he gets agitated enough and becomes violent. Never in my life did I think I would just be waiting for someone to try to hurt me! What a terrible disease! I will keep you posted! Many, many thanks!
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it is not too soon for memory care, not at all. I would find out which hospitals near you have geriatric psych units and have him admitted for inpatient medication management prior to placement. You can honestly say that you cannot safely care for him at home any more!
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M1 - I think he isn't ready for placement yet because he can still take care of himself; fix a sandwich, shower, get to the gym in our facility, etc. It is just his behavior that seems so advanced. He is very agitated and angry, and very hypersexual, but all of the other indicators for placement aren't there. I know if he gets violent that will accelerate the process, but I also know he would be able to talk his way out of an involuntary hospitalization, and then where would I be? He would go willingly to the doctor, and takes any medications I give him without any issues. He has had a few episodes of sundowning where he doesn't know where he is or who I am, but he comes out of it. Am I wrong that he might not necessarily be ready for placement? I value your input - thank you so much!
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Peg, you poor thing. This sounds horrible. Since he willingly takes medications you hand him, I would for sure be asking his doctor for medications for his hypersexuality. Is he on any other meds?
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@Palmetto Peg
I am so sorry. This must've been hard for you to share; I admire your willingness to do so.
Doctors are not the ones who make the decision as to when a person is "ready" for MC unless that is tied to a springing POA that requires a letter stating incompetence from a physician. Dad's PCP thought he and mom should move to AL together. He actually brought it up at dad's admission's physical as if he were throwing me some lifeline that I didn't know about. Seriously? I was trying to keep him from murdering her in her sleep. But he did fill out the paperwork needed for admission.I also don't put much weight in a doctor thinking they know what you're living with day-to-day just because they see patients with dementia at their "best" time of day in the office showtiming. Dad's geripsych didn't understand the level of aggression at home until I sent him a video of dad threatening me. A picture is worth a thousand words— even more with audio.
Seroquel helped us keep dad at home a good 18 months longer than we could have without it. FWIW, dad's hypersexuality was primarily verbal. He talked and asked about sex all the time. For a time, we had to keep him home as he was stuck on a script bragging about sexual exploits that would have led to jail time. I don't know if additional medication would have dampened this down— he was already on androgen deprivation therapy, 25mg Seroquel, and 60mg Prozac.
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Peg, as harshedbuzz says, I don’t know that there are any criteria to say when he should or shouldn’t be placed, other than whether you can safely care for him at home, and right now it doesn’t sound to me like it’s going too well. Absolutely it’s going to take medication to control this behavior-probably an antipsychotic like Seroquel or risperidone. It worries me that he’s having periods of not recognizing you- that’s about where my partner was when we had to put her in MC (with aggression over driving the trigger). Maybe your doctor can try treating this empirically first, but I would have a low threshold for hospitalization, and then you decide from there what to do.
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The ability to make food and do other personal care, etc. are not measures for his not being acceptable for a psych admit. It is the behaviors that make that determination and he certainly is exhibiting behaviors requiring professional intervention.
From what you have written, it appears that medication is in all probability necessary. The ones that come to mind are Risperidone or Seroquel. If may be that the physician may be willing to prescribe until he can be seen and get into a psych mode of care. ALWAYS, when things are this dicey, when speaking to the professionals who carry the keys to his admission and care, be specifically dramatic in your presentation of the behaviors - that sadly gets more action than our being quietly and calmly verbally communicative. Have to give the professionals a reason for accepting a real need. I've been there and learned that the hard way.
If you can (and need) to have him seen in the ER; you can refuse to take him home stating you can no longer care for him due to the severe nature of the behaviors and you are even fearful for yourself; especially at night and other times. That may gain him a bed. Relating that you are able to handle everything and all is smooth as for chores and physical care can keep one from gaining the care that is so needed and be placed on the bottom of a list. Sounds ridiculous doesn't it, but it happens.
I hope you are able to gain the help needed very soon, take good care and please be careful for your own safety and needs.
J.
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Again, thank you all for your responses. I will speak to our primary tomorrow and see if we can at least try a medication to quell some of this sexual aggression. I am afraid, and especially at night. He is much bigger than I am, and has shown that he can be very aggressive verbally, and physical violence would not surprise me. Right now he is relatively calm, and I am being especially careful to not do anything to provoke him. What a terrible thing this is! He was always controlling and has been verbally abusive in the past but I was never afraid. And, if I have to call 911 there is NO WAY he will be returning home with me unless there is some serious medication happening and I can see for myself that things are different. He, too, has complained about not being able to drive, but I have not given in, and I won't. Hopefully, tomorrow will bring some much needed help from the doctor.
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@Palmetto Peg I too am sorry you are suffering this abusive behavior. Add me to the list of those sending you moral support and encouragement to see this as an urgent situation that may merit placement in a professional setting sooner than later.
I think you have been a very caring and self-sacrificing carer and now you really need to put yourself first. That will likely even get your DH the help he needs to stabilize these behaviors so others - aides, nursing staff, other strangers, do not get molested as you are. Glen Campbell's wife talked about his hypersexual phase in their documentary on his Alzheimer's journey though she did not go into specifics. Just that he really would not leave her alone. She mentioned their doctor had to prescribe something to address it. As others (and you) have said, that paves the way to get all his behavior in control so he will not get rejected by MCs.
I hope you make as much of a pest of yourself with the medical or ER team as he is being with you (understatement). That way your concerns will be addressed asap, as they should. Good luck to you in a speedy and lasting solution.
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it was my DH’s PCP who first prescribed Seroquel and increased the dosage once or twice but it was at a very low dose. I had him sent to ER for severe agitation and they ended up admitting and keeping him in the hospital for a week after giving him too many drugs and having to medicate him to get his heartrate back to normal. It was a hospital psychiatrist that put him on Risperidone which was very helpful in calming him without making him overly drowsy. When we finally were able to get into a neurologist 8 months later, he did a lot of scans and diagnostics, but stayed with the plan he was already on for meds.
I was very insistent and involved from the beginning, probably driving his doctors crazy. You definitely have to be a squeaky wheel.
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Dear Palmetto Peg,
I am so sorry this is happening. I could not tolerate his behavior. You deserve your peace and safety. Please get the meds from the doctor and follow the advice of these experienced caregivers. You are living in an impossible situation. It is bad enough that this disease robs us of our life without such intense harassment.
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I’m so sorry this is happening to you. My DH was hyper sexual for a week ( thank God he passed thru that phase). I locked myself in the other room and was very afraid and he was not as aggressive as yours sounds. My stomach and heart is so sick for you - but you do need an escape plan. One night I hid all of the knives just in case. Now I continue to sleep in the other room and put in a baby monitor so I can hear him if he needs me.
What a terrible situation you are in. Don’t hesitate to call 911 if you need them. I know he doesn’t know what he’s doing, but you must keep yourself safe.1 -
The hypersexuality is a characteristic of the disease. As the violent behavior is as well. They are both miserable to live with. Taken together they are impossible to live with. Docs can be helpful.. . Or not. You need support. Contact a therapist and go. Tell him you are grocery shopping or whatever. Get out of that house. If you haven’t seen a lawyer to look into a power of attorney for health care or guardianship, now is the time to do it. Do some investigation of what memory care units are available to you. The lawyer can help you with investigating costs and getting your husband on Medicaid. Is there a gerontologist or a neuropsychiatrist somewhere accessible? Before you seek a second opinion, visit with them before hand and BE HONEST about what is going on. Dontbeafraid to use the 911 number. Would your sister provide you temporary shelter if you need iT? Is there a facility for abused women in your community? And start keeping a written record. It is not too soon for memory care. This situation sounds dangerous and I worry about your safety.
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I concur with everything others have said. I lived with a volatile, aggressive DH who finally had to go to MC because I didn't feel safe. I was locking myself in every night and sleeping with the car keys under my pillow. We had to get two physicians to agree to the MC placement because of the nature of our POA. It wasn't hard after DH decided to call an Uber and take off for parts unknown. I consider myself lucky that hypersexuality wasn't a part of his aggressiveness, but throwing small objects was. Please tell your PCP of your fears and inability to feel safe in your home. I have been in your shoes and it's horrifying.
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Psychoactive medications take 4-6 weeks to build up in the body systems to become effective, as a minimum. This is why hospitalization is recommended for many patients, so their responses to treatment can be observed closely. Do not expect immediate improvement.
Iris
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Tigersmom, depending upon the response to treatment, the dosage may have to be increased. Keep following up with the prescribing doctor to find the right dose.
Iris
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Getting my DH to the ER was key to getting an escalating situation under control. The ER Dr. was ready to discharge him but a wonderful social worker there (who had seen me cowering in a side room) intervened and had him admitted (as he was a risk to both me and himself). After a 2 week stay at the hospital - where they found the right combination of meds for him - he was transferred to a MC facility.
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Again, thank you all for your suggestions and comments. His doctor added Rexulti to his medications. She felt it would help calm his agitation and that in turn would calm some of the hypersexuality. We are on the cancellation list for the geri-psych evaluation, but unless someone cancels, we won't be seen until November. He is a little better now. Some of his behavior probably had to do with jet lag (we were in Seattle for 6 days), but I am still prepared to leave at a moment's notice. We live in a retirement community in an apartment, and I have neighbors on both sides who are at least aware that he has dementia. I also have a pendant that I wear to summon security and I won't hesitate to call 911 if necessary.
As far as therapy for me, I really don't leave him alone in the apartment for more than 30 minutes. He works with a trainer for an hour 3 times a week, and the trainer has worked with dementia patients and knows my DH is progressing. I might try online therapy if I can work out a regular schedule with a therapist, and then get the trainer working with DH at the same time.
I really think that after the geri-psych eval I will be able to put him in memory care, but I'm not sure I could get him admitted just on our primary doctor's recommendation.
I will keep you posted - and thank you all from the bottom of my heart!
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I would also give the security in your community a heads up about his behavior so they know what they may be up against if you have to give them a call. Do you have a direct line to the security? I'm so sorry, please take care.
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Kevcoy - security is aware of his dementia. In fact, they contacted our doctor twice when they observed him wandering around looking for his bike (no bike anymore) and once when he was lost trying to find our room. That was before I stopped letting him leave the apartment unescorted, but they have told me what to do in case of an emergency. It is a true blessing to live here - at least I have some support!
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If your doctors haven't already, check his testostrone levels. Our doctor had put my husband on a medication that really ramped up his sexuality. Obviously, brain changes can contribute to this too - not unusual. Best to you on this hard, hard journey.
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I would tell him you have an infection and your doctor said you can't have any oral sex. Hypersexuality is very common with dementia. Talk to his Primary Care Doctor immediately and call the Geri Neuro doctor and tell them it's urgent you have him seen immediately. Ask his primary care physician to make a call to the Geri Psyche doctor for an immediate referral or you will have to have your husband admitted to the hospital.
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Agree with everything said above. I’m a pediatrician, and in my training we had families coming for psychiatric admission for their 300 lb 16 year old son with severe autism who was having aggression and inappropriate sexual behaviors. Truly, your spouse’s behavior is dangerous to you and to others. He needs to be admitted to geriatric psychiatry because he could do something unsafe in public that could end in a violent confrontation with an angry member of the public or with the police. We are all aware of police being called for mental health crises that don’t end well. As a physician, I am beyond baffled as to why your husband’s PCP isn’t on the phone looking for a bed in your region. I would be, if I were his PCP.
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Thank you for the additional help. I don't know why the PCP isn't looking for a bed, either, but I will call again tomorrow and ask. He had a huge outburst last night and was screaming (literally) at me to get out now! Then he went into our bedroom, slammed and locked the door, and I didn't see him again until midnight when he came and asked me why I hadn't come to bed. He had no memory at all of what had happened. I have a call into the doctor to discuss that, but didn't hear back today. It is such a struggle, and it seems like the medical field, for the most part, don't have answers, either. He needs to be evaluated and properly medicated, and I am going to continue to work to get that for him. In the meantime, all of your suggestions will be put to use! This community is a lifesaver!
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Do you have a patient portal for your husband's PCP? I find that I cut through all of the staff taking messages and get right to the doctor.
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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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