Newlywed New Care Giver

Cinsababe

I just wanted to introduce myself as I am new to the site. After 38 years of marriage my 1st husband past away from cancer and I devoted myself to our children and grandchildren; I was just 54. I really didn't think love would happen again for me. But 8 years later, just two years ago I met a wonderful 70 year old man at church who swept me off my feet. 

We were married just a few months later. That was March 2019. It didn't take me very long to realize that maybe something was amiss. He struggled with the checkbook. He couldn't remember the names of my children and grandchildren. And most of the time he called me by his former wife's name. After about six months of marriage he started doing very strange things like hiding his "treasures" from me so I couldn't quote steal them. He started making up wild stories of things I had said or done that weren't true. I talked to our primary care physician who suggested he see a neurologist and just one year into our marriage he was diagnosed with dementia. After more testing the doctor told us it was probably Alzheimer's. In November of last year he got covid and while he survived, it advanced his dementia.

 I am grieving for the charming romantic man I married just two short years ago. Now I find myself tolerating verbal abuse and name-calling on a daily basis. I know this isn't him and that is actually the disease, but I miss the man he really is. And I know it's silly but I feel like I have to defend myself. I want him to know the truth that we have a loving and wonderful relationship. But I believe he is probably beyond that now and for whatever reason wants to live in a world where he believes I am an evil, vile, abusive person who assaults him. (All things he has said) who speaks to him harshly. 

He was very excited about Fourth of July and wanted to have a picnic with friends so I invited some family over and when the time for picnic came and the guests arrived, he took his food and hid in the bedroom saying I was treating him terrible and called me a b**** in front of everyone. He wouldn't come out. I guess I learned my lesson. 

This is all so new to me. I keep thinking if I just talked to him and reason with him I can show him how much love there is in this house and that no one is hurting him or upset with him or lying to him. I want him to be happy and blessed in these last years of his life. Is that ever possible?

sandwichone123

Welcome Cinsababe, I'm sorry you're here, but it's a great place for those of us that need it. I also married rather recently, so have some idea of the sadness, different from the sadness of those with long relationships.

Grieving is what we do, along with caretaking. Whatever stage and whatever symptoms we're challenged with *this* week, we miss the person we used to have.

I don't know whether he can be happy or not, probably at some times, but I do know he can be blessed. If you can stop trying to reason with him it will be better. The reasoning part of his brain is broken, and it won't work. There are a couple of things that can work, though. You can respond to the feelings behind his words, "wow, that sounds really scary," or you can enter his world, "you feel like someone is stealing your stuff?" but you can't make him enter your world. If you can join on his side he will be blessed and will have a better chance to be happy.

Oh yeah, and expectations suck. Whatever happens, it's something we couldn't have predicted. I'm predicting that dh will go to bed when people come over tomorrow, but we'll see...

Diane

banpaeng

I think you should have a meeting with his kids and yours.  Have a copy of this thread and show to them.  

They should see the caring and love from yourself.  If not, their loss.

Once all are there, make the plan that most fits right now for the future.  It will 100% change, however write it down and keep.  It will come in handy.

M1

Welcome to the forum Cinsababe, it sounds like he was probably already compromised when you married.  I'm so sorry, not what you signed up for.  Lacking a long relationship, he may not adjust well to your being the primary caregiver.  Have you got plans in place for how to proceed if that's the case?  Others on the site would tell you--and I agree--that no one, even spouses with longer relationships, should have to endure abuse.   He may respond better to the care of strangers.

BTW there are meds that can help with the delusions of stealing, etc.  That it at least a stage 5 symptom--read about the stages of dementia--so he's already pretty advanced.

Given the newness of your marriage, I would check your legal documents also.  Were changes made to his will?  Is anyone likely to challenge those?  What about your own documents--you should not have him as your power of attorney, etc.

Quilting brings calm

If you have not already  combined finances, don’t.  Don’t add his name to anything you own.   Get an attorney to discuss how your finances  are affected should he need Medicaid in the future.  I hate to say it, but you may need to get divorced as soon as possible to protect yourself.   If he has children, this could get ugly as they could  say he wasn’t competent at the time of your marriage.   

I’m sorry this happened to you so soon in your relationship.  It is  one thing to have the person you’ve been with for decades come down with this disease that changes them so drastically mentally and emotionally. There’s a lifetime of memories for the caregiver, children and grandchildren.  A new relationship like yours hasn’t even had time to work through the first couple of years.  You’ve barely even agreed on how to fold the towels or squeeze the toothpaste.  There’s no shared history to help dull the sharp pain of the insults etc. 

Iris L.

Cinsababe wrote:

  Now I find myself tolerating verbal abuse and name-calling on a daily basis. I know this isn't him and that is actually the disease, but I miss the man he really is. And I know it's silly but I feel like I have to defend myself. I want him to know the truth that we have a loving and wonderful relationship. But I believe he is probably beyond that now and for whatever reason wants to live in a world where he believes I am an evil, vile, abusive person who assaults him. (All things he has said) who speaks to him harshly. 

He doesn't want this, it's the dementia.  If you read other threads, you will read almost the exact same words from other spouses, even the long-time married ones.

Please read a lot and read about anosognosia, the inability to be aware of having dementia.  It's one reason why explaining and reasoning backfire.  The PWD truly believes he is fine and that YOU are the problem

This is all so new to me. I keep thinking if I just talked to him and reason with him I can show him how much love there is in this house and that no one is hurting him or upset with him or lying to him. I want him to be happy and blessed in these last years of his life. Is that ever possible?

He can be happy but it won't be the type of happiness you're thinking of.  He is living in a different world now. 

Iris L.

Paris20

Cinsababe, I am so very sorry for what has happened. Has your husband seen a neurologist? That is a must. If he has children, they need to get involved. You are a newcomer to all this, in every sense of the word. Your primary care doctor can help you start to navigate what’s ahead.

One thing everyone else in this forum can tell you is that if your husband has dementia, no amount of reasoning, common sense talk, even love can change your husband’s illness. He can be made safe, comfortable, and perhaps calmer with the right meds, but nothing can change the inevitable. However, a definitive diagnosis is the first step. Good luck and God bless.

Rescue mom

Others have already said it, and I will back them up. You cannot reason with him. His brain no longer works right.  Try to “go along” with him, even if absurd, to avoid upsets.

Your party sounds so familiar to me. My DH with Alzheimer’s was the party animal, Mr. Social, before. After Alzheimer’s, and earlier,  he would occasionally say he wanted to get together, or have a party, with friends or family. It always ended as you said (without name calling though). As soon as a few people gathered, even family, he’d try to get away into a room or space alone. Even at our own home; it was worse elsewhere and that ended fast. I understand from other caregivers that’s fairly common behavior.

I am so sorry you have entered into this.

Cinsababe

Thank you for all of your replies and the advice. We have been to the neuro, twice now, with a follow up in August. I have found an elder care lawyer and hope to have an appt in the next few weeks. He has two kids, both living far away in other states. His son is aware of everything and very supportive of anything I arrange or do....neither can be available for their dad. 

As soon as we got the diagnosis his son told him we had to have POA to protect him and we also helped him update his will. I have nothing myself, I gave up all of my military benefits from my first husband when I married him.

Reading all the other posts I realize I should take a written report to the doc so he has all the latest updates on his behaviors. It is hard to talk in front of him, first because I don't want to hurt him and second because he denies everything and says I am lying. While his language is awful he has only been physical once. I stayed very calm, told him he was hurting me and that I was going to call 911, so he stopped. (It was the day he realized he no longer had his keys) After being on here just a few days I realize I have a lot more work to do! 

Jo C.

Hello Cindy and a very warm welcome to you.  I am so glad you have found this safe and very supportive place.  It was the people here who helped me through the worst of times and I also benefitted from their experiential wisdom.  This is a long Post and I apologize for that in advance; but there is a lot to talk about.

I do want to tell you about the 24 hour/365 day a year availability of the Alzheimer's Assn. Helpline at (800) 272-3900.  If you call, ask to be transferred to a Care Consultant.  There are no fees for this service.  Consultants are highly educated Social Workers who specialize in dementia and family dynamics.  You may call as much as you wish.  They are great emotional support for the caregiver; we can simply talk or vent; the Consultants have much information and can also sometimes assist us with our problem solving.

You are a very kind and loving person of good spirit, and I am so very sorry that this is happening.   You are on the right path with a Neurologist as part of the healthcare team and also to have an appointment with an Elder Law Attorney. That is very important.  It seems that a POA and updated Will has been done; the Elder Law Attorney can cover much about protecting yourself financially as much as possible and discuss Guardianship should that ever become necessary; and preparing for the future with the probability of need for placement in a care facility should that become a reality and it may happen.

 You are on the right path to type a succinct memo to the doctor outlining all changes in cognition, function AND especially behavior. I used to do this for every physician visit. I would send it to the doctor by fax a few days prior to the visit, but also carried one with me in my handbag just in case the doctor had not read it.  That information is necessary to be able to conduct an adequate exam and to put together a plan of care.

NOTE:  When you see the Neurologist, ask if he/she can assess and rule out the possiblity of one of the behavioral variants of FrontoTemporal Dementia.  That type of FTD is all about behaviors; much of it like your husband is exhibiting  Sometimes, it is Alzheimer's but the frontal lobe is compromised and the behaviors are over the moon. There is medication that can assist with that.  Accuracy for type of dementia is crucial as meds for one type can be contraindicated in another and even make things worse. Sometimes, over time, as symptoms evolve, the diagnosis for dementia type can change.

Very often we resist meds for our Loved Ones, (LOs); but if they are driving us to distraction; imagine what it must feel like to live inside their heads not only believing all those delusional thoughts but also FEELING them.  Not good. If meds will help that, there will be more peace for both of you.   I found that out the hard way; I had resisted medications and oh my; how I wished I had taken that path for helpful meds earlier; the meds restored much of the quality of life for my LO and it made quite a difference; not perfect, but SO much better.

As to the physical attack; the Neurologist needs to know about that. Yes; it was only once at this point in time; but the impulsivity is there.  It will more than likely happen again and will happen in a second as the urge or whim strikes him in a flash.  In this light, it is best to remove anything that can be easily be used as a weapon.  Hide the knives; scissors; hammers, tools; golf clubs, baseball bats, etc. Remove those danger items not needed.  Definitely NO guns in the house.  Even kitchen knives need to be put away out of sight. Sometimes we even use childproof locks on our kitchen cupboards and drawers that are easy for us to use but our LOs cannot operate them.

Keep a charged cell phone on your person and have a room that has a locking door if you need to do that.  It is also good to call the local police department and ask if they have a computer program that they can enroll your husband in as having dementia. That is a very good thing to do.  If he ever wanders away or becomes violent, the police will have his information and that can be very helpful in a positive manner.

Your husband is now past being able to be "happy" in the sense we usually recognize. There is nothing you can do to make him happy.  Routine and structure to the day is very important, and he may now have trouble processing things; especially if multiple people are present or there is too much stimulation - sometimes this includes the TV.  Using fiblets, or "therapeutic fibs," are a good tool in the caregiver's toolbox and are absolutely okay.  It is not a moral lapse, it is a kindness to prevent meltdowns and to be able to get things done.

Ir is so sad to realize we cannot reason with our LOs who have reached this stage in their disease.  We cannot convince them of our love and how we are helping. By this stage the brain is too damaged and the logic, reasoning, and judgment capabilities are now significantly damaged and no longer work in the way they used to. Processing too is difficult.  Never argue, try to convince or educate to the reality; that causes more resistance, much anger and bad behavior.  It is best to validate the feelings behind his words rather than the actual words themselves.  Our LOs can no longer process our world reality, that is far past them by this stage of being; we must enter their world. 

Something else to think about. It would be good to discuss with the attorney about Memory Care or Nursing Home placement possibility in the future. Even if you do not think this is part of the plan, you need the knowledge. If your husband has assets, he will be a private pay for care needs; if he has little to no assets, then the attorney can discuss Medicaid for Long Term Care with you.  Things happen and they can happen fast and suddenly there is a need whether physical, or dementia related or a combination of both; so having knowledge will keep you from having to run about not knowing under time constraints and pressure.  In this light, when you can, begin to screen care facilities online. You may benefit from visiting those you feel are a good fit even if you do not plan for placement.  Sometimes, a health issue will rise up unexpectedly and/or the dementia behaviors and acuity of care become so heavy that there may not be another option. This does not mean you have to use a facility; it just means you are knowledge prepared for any eventuality.  This is part of protecting yourself and him.  If placement should ever become necessary; you would not be abandoning him.  You will still be his caregiver, just in a different sort of way.  You will be his loving wife rather than the exhausted, burning out frazzled person that heavy high acuity caregiving can sometimes cause.

So hope you continue on here in this comfortable place where you will be understood as we have all walked a similar path or are presently doing so.  We will be thinking of you and we truly do care.

J.

Gig Harbor

Your military benefits that you gave up are important. If you could get your marriage annulled could you get them back? You could still live with him but it might protect you from financial disaster if he doesn’t have enough to care for himself.

aod326

Hi Cinsababe. How terribly unfair that this should have happened. You'll learn a lot on these message boards and I just read your more recent post where you're already making use of some of the tips. Good for you!

What I have to say may sound cynical and uncharitable, but I say this from the point of view of lessons learned by me and others on this board. It is great that your step-son is supportive and that the POA is in order. However, "neither can be available for their dad", is a worrying statement. If you and your husband hadn't fallen in love and married, one or other of his children would have HAD to be available for him. 

You sound like a loving, caring person and, as you mention church, I imagine you may also be thinking that supporting DH through sickness is part of the vows you took. Please don't take it all on yourself though. This can be a long, tough journey and, sadly, you don't have a huge number of fond memories in your bank. His children will need to "be available for their dad", more than just supporting you in the choice you make. 

Sorry if that sounds harsh.

Good luck.