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I am 55 and he is 53; Husband of 4 yrs diagnosed w/ early onset Dementia 2 days before wedding day. Out of the blue 2 wks ago he said he feels like we’re not compatible. He wants to separate and clear his head. He says that at the end of the day he needs silence and to see what is left of him. He wants to buy an RV and be alone. He refuses to go back to the dr. He’s currently dealing with a lot of stress. His mother and aunt are both close to passing. This came out of nowhere. He is the caregiver for them because he won’t let anyone else help. This man is the love of my life. I knew what I was getting into when we married, but now he’s just throwing it all away. I want to be there for him and support him and take care of him but he just keeps pushing me away. He seems so cold and distant, he is emotionally empty. When I am emotional it angers him and he tells me to stop playing the victim and walks away. His kids have all talked to him and tried to talk him out of it but he is dead set on this plan. He appears to be lucid and normal to them but they are not with him every day. I’m worried about him and his safety and I don’t know what to do. We’re in the process of packing up our house to sell. He said that I deserve someone who can return my love and give me the things that he can’t. Please help!!

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Call your hospital and ask for a social worker. They can set up an appt for you and get some good sound advice. That will be a starting point to get advice on where you start to handle him and the situation. They can help you get the correct medical diagnosis if your husband has signed off for you to have.
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Imho, no one should make HUGE decisions when they're not of lucid mind. Prayers sent.
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Yes, stress can create bigger problems. My boyfriend's mom had some dementia issues that were apparent, but doable. A little confusion or couldn't recall a name. Asked about relatives if they were still alive or not. A conversation could still be held with her. If you reminded her about someone, it would come back. Little things.

Her oldest son died unexpectedly and she totally split from reality immediately. He died in March and right away her husband could no longer take care of her in the home (and Lord knows he/we tried). Within a few months she could not remember how to walk or to follow any kind of direction from physical therapy. By Oct/Nov she said she knew my boyfriends face, he looked familiar, but had no idea he was her son. Even if you told her his name, she would smile and repeat the name, but you could tell she was no longer putting 2 and 2 together. She passed on Christmas Eve. We were very shocked at the immediate decline. Everyone could put an exact finger on the loss of son and how her mind totally left her when that happened.

Without crying or becoming too emotional (yes, it's hard), why not try a different approach. Tell him you have no where to go and suggest a roommate situation. He can help you and you can help him.

I know you're in the process of selling the home, but appeal to what may be left of 'financial' thinking for him - two homes are more expensive to maintain and you both need a place to live. You've only been married a short time - so what is the agreement (if any) about division of property? If you get half, you might toss that into the conversation about the incomes will go further if you are together than if each of you only takes half to find a new place to live. . .maybe a higher mortgage payment than either can afford.

Does he plan to buy the RV from sale of the home? Or does he have access to other monies that would pay for an RV? There's a good chance he could go to a dealer and make the purchase without anyone knowing about it.

You know, it may also be possible that there is just enough reasoning left in his mind that he just wants you to move on before his memory is really gone. Maybe he really doesn't want you to go through or see him when things go south. His brain may also be a blur of thoughts with his family issues and he really does need to have some quiet. (I know that as a caregiver myself, sometimes my own brain is going 100mph - I joke about getting a morphine machine so I can just push the button and get a sound sleep). Is it possible for him to get a room or a cabin at a park for a week just to quiet his brain - doesn't have to be that far from home. If his kids have quiet lives, maybe just a few days out of the house and stay with them. His world is being turned upside down and now yours. Bless you as you do your best to resolve.
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Yes, Yes. There are lots of articles on the internet about this.

Llearning to manage your emotions when your around people with dimensia/althhimers will not only make it easier for you to engage him it will make your life a whole lot easier.

A few books to look at
Dr Amen: Power of the female brain, Magnificent mind at any age
Dr Amen also has great shows on PBS
Rev Robert Shueler tough times don't last tough people do (I spelled his name wrong)

Look into teachings on ZEN and meditation
Make sure your getting exersize and eating right
Also ask your Doctor

I ASSURE you this is something you can change. The good news is you havae FULL control of this
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With most dementia, judgment is the first "ability" to go. So routine becomes the most helpful way of life. If he is experiencing changes while caring for others - and that should be supervised since he has dementia - then he will experience frustration, anxiety, and stress. He may not be able to verbalize his fears to you but the tidbits of conversation you shared point to stressors in his life. It is easy to fall into depression or anxiety disorders. Thankfully, medication and therapy can help.

Please make a "routine" appointment with his doctor. Make sure to go with and explain the problems you are experiencing in your lives right now. Either his doctor may prescribe some mood-stabilizing medication or he/she may set up a referral with a psychiatrist. His doctor can also check to make sure that there are not other problems as a source of his difficulty.
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Have to ask this before I get into my response. Are his kids FULLY aware of his diagnosis and do they agree with it?
Yes stress can make dementia worse.
He is getting stress from different angles.
He is caregiver for his mom and his aunt. The fact that they are dying makes it more difficult. You do not mention what their conditions are but if either has lost mental capacity he can see what the future holds for him and you. That is frightening for him.
I found with my Husbands dementia that he no longer showed affection. No hugs. He would hold hands with me. He would give me a kiss good bye, kiss me when I returned a kiss good night but I do not think it really had a meaning to him. (some are the opposite and become highly sex driven)
If he is aware right now as to what he is doing, can comprehend his diagnosis this is frightening for him and he is probably pulling back to "save" you the difficult journey ahead.
You say you are packing up your house to sell. Do you have another? are you moving far? Moves can be difficult. He may also be worried that he will be lost in a new place. (lost both literally and figuratively)
Make a deal with him.
If he agrees to return to the doctor. Discuss with the doctor the possibility of Depression and if it is necessary take medication. Continue with medication for at least 6 months and if the doctor thinks it is safe he can go on his road trip. But someone has to go with him. You or one of the kids.
My guess is that after 6 months with an anti depressant and having to get the doctor's ok the road trip may not happen.
Contact the Alzheimer's Association and find out if there are any support groups that are meeting right now. And find out if there are any support groups meeting FOR people that have been diagnosed with dementia. It might be good for him to talk to others that have also been diagnosed. (I just checked my local AZ Association site and there are Early Support groups it is an 8 week session.) Attending one of the sessions might also be part of your "deal".

My heart goes out to both of you. I hope that you have also talked with an Elder Care Attorney to make sure everything is in order. You need to protect yourself. I do hope you have a good relationship with his kids!
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You didn't mention how long ya'll have been married or how long he's been divorced from his previous wife?

Of course being diagnosed with dementia is a lot to think about too.

There isn't really anything you can do, but let him go and let him know that you are there for him if things don't work out or he changes his mind.

Is there a way you can keep the house and he can still buy an RV to let him try clearing his head?

Dones he plan to continue caring for his mom and Aunt?
Maybe he just needs to get away from everything.

It is very stressful to be a caregiver for someone.

He could just be burnt out.

He could also be having a mid life crisis.

If you love him, you'll have to let him go.

The tighter you hold on or the Guiltier you try to make him feel will just drive him away even more.
Let this be about him and not you, even tho I understand this is devastating for you but you have to be the strong one and set him free with your live and support and let him know you're there whenever he needs you, even if it's just to talk to.

Prayers
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Sounds kind of familiar. My husband's dementia actually started 6 years ago, but progressed to Alzheimers about 3 years ago. His off and on mood swings swayed him into making careless and unthoughtful decisions, which caused so much stress in our marriage and my physical health. His family (all out of state, and only visited once a year, if that). thought he was fine, "because he looks and sounds fine". It got to the point with is memory loss that I had to make the best decisions for our household, whether he or families didn't like or understand. He's now in a memory care unit, permanently, but a few still don't get it. They aren't here 24/7! He's only 68, and yes, seems "normal", but looks are deceiving. At least everyone knows now that over the years I've done my best to take care and love him. He's told them that.
I suggest you go with your gut, support his decision, and maybe some day he will "have" to need you and want you. Hopefully, that time will be soon. Meantime, take care of yourself, your health, your finances, and don't feel guilty for it. You're doing your best. Maybe let him buy that RV and suggest going with him as a companion? Go have fun while you can. But it's so hard to do during this pandemic. Best to you.
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Not sure if he is suffering from dementia. Sounds more like he is depressed and upset with the situation he is in. Maybe letting him go to be on his own for awhile might be a good idea. Your story sounds very similar to what I have gone through. The difference is that I was in your husband's situation. Be as supportive and loving as you can be. If he truly loves you he will come back. Not talking about the physical sense but emotionally. Give him his space and give him some time to think things out. He needs to stop being so selfish and to stop thinking it's all about him! Hopefully, as in my situation, he will wake up and realize that there are others that are helping him to get through his predicament. Make sure he understands that he is not alone and that he is not the only one having a difficult time dealing with his mother and aunt. Good luck. He sounds very difficult and selfish. Big time "cop out" when he says you deserve someone else. Straighten his a** out and ask him to lay out the truth.
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In my humble opinion, I believe your husband is hurting from what is happening with his mom and aunt.

I think he is hurting and maybe angry some and does not no how to handle is emotions. Therefore, I think he wants to be alone.

I'm sure he does have a lot on his mind.

Most men handle their emotions by being alone.

However, you asked if very stressful situations can make dementia symptoms worse. Yes, they can.

In fact, studies have shown that people who live in stress when they are younger are more vulnerable to developing dementia later in life.
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Trying to see things from your husband "s point of view, he may be letting you go to free you to live your life and not have to go through he(( taking care of him in his dementia years.

If that is what he's doing, then he's giving you the most loving and unselfish gift he can give while he still has his mind
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Dora1956 Oct 2020
I believe you’re absolutely right, Polarbear! That was actually a beautiful answer for Newlywed55. As hard as it may seem it’s a very loving message.
my mom always stated she never wanted to burden her kids when she got older. She wanted us to live our lives...she wanted to move away to make it easier because we were way to close to her distance wise as well as emotionally.
Well that never happened & she had a hemorrhagic stroke after she was diagnosed w/ dementia. I moved her in with me & I’ll tell you, it’s the hardest work I’ve ever done. One has to be gifted with A LOT of patience.
Caregiving is exhausting with one person much less with 2?!
Mom has consumed my life...literally!
The husband of Newlywed55 has his hands full & probably could use some alone time. Dementia is a very selfish disease and it doesn’t matter who it hurts!
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Quiet, space & time may be needed for your DH to mentally adjust to the changes he faces.

But I get a small vibe this man is wrapping his life up - I hope I am wrong.

Please seek medical help for him.
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DrBenshir Oct 2020
You are on the money. Hubby is taking himself out of the picture. He doesn't want you to go through with him what he is going through as a caregiver. He may be planning end of life deliberately, on his own terms, while he still can. Discuss this with family if you can.
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This is so sad. I am so sorry that you are struggling with this situation. I feel stress makes everything worse.

I would follow up with the seeing the neurologist as Barb suggested. Best wishes to you. Sending prayers and many hugs your way.
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Newlywed55, I am so saddened by your story. This disease is insidious, relentless and so confusing to say the least. He says you're not compatible, he wants to be alone, he's dealing with alot of stress and yet he says you "deserve someone who can return my love and give me the things that he can’t." He still cares and he still loves you. But he's got this disease that overrides his thinking and logic. I say disease but you don't even know what that is after 4 yrs. Dementia is not a disease, it is a goup of symptoms that are caused by some underlying condition. Your neurologist visit should be able to tell you what that is. Until then you don't know what you (and he) are dealing with. When you do find out you can begin to educate yourself about it.

And yes, stress can make dementia symptoms worse. In fact, severe stress can cause dementia. EO dementia caused by one of the neurodegenerative diseases normally progresses much faster than you describe. So get him back into the drs office o see what you're dealing with. His PCP can do simple cognitive tests to detect dementia, but he/she is not trained to determine the cause. I hope your visit to the neurologist this week is fruitful and answers some of your questions. We'll be thinking of you. Let us know.
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I see from some of your answers here that in these four years, since diagnosis of early dementia, there has been no diagnosis followup for type of dementia, staging, and neuro checks. I think also you may not have spent a lot of time researching and getting education in what this dementia will mean, because no matter promises made upon marriage, they will not matter when a person no longer has a competent mind. The fact you have in four years seen no progression is making me question this four years ago, in late forties, early diagnosis of dementia. There is also no paperwork done? These are your last moments to get this all in place, or your will have no ability to help in your husband's care without guardianship. It must be done now. You will need to start now with a good workup; this may also offer help with the stress factor; then with a visit to elder law attorney or Trust and Estate, to set in order POA papers so you can act for your husband in health and financial ongoing if needed. It seems nothing has been done since the four year ago diagnosis? And I am surprised at the lack of progression in four years? Early onset often progresses very quickly. Wishing you good luck. Please get together with any support you can find and get going on these things. There are even some useful sites on Facebook for support with those suffering from dementia. Wishing you good luck. Hope you will stick around on Forum to answer and to ask. It can be a great help.
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Is this fronto-temporal dementia?

Have you contacted the neurologist and told her/him what is going on with your husband? I think that might be a good first move; if you don't have a HIPAA release, the doc can't talk to YOU, but s/he can do a "check in" with your husband.
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Newlywed55 Oct 2020
I have not contacted the neurologist yet but I plan to this week. I am on the list of approved to talk to. I don’t know what kind of Dementia it is. I don’t think they ever told us that.
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Your husband was diagnosed while in his 40s? Yes, this is early indeed. What was your discussion with him about what the future would be? Do you have all legal work in place to act for him when you must? What is your understanding of what the future will be, because it sounds as though he does need now to see an MD; you BOTH need to know how much of this is Early Alzheimer's, how much of this is stress, and how much of this is a wish not to be married any longer. With Early Alzheimer's things usually move quickly. You are now looking at losing your husband while still he exists, whether you live together or not. What support systems do you currently have in place for yourself?
You say the home is being sold. Is your husband mentally capable of doing that now? And of handling the care of two elders?
If your husband is currently this far from you mentally, then in all honesty a division of assets may turn out to be a GOOD thing, even if you remain his DPOA and Guardian for care in future.
You say that you yourself have health care limitations. What are they? What support system is there for each of you going forward?
My advice right now is to step back as much as you can for a few weeks and reassess where you are. The unwillingness to see a doctor is a very very very bad signal indeed.
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Newlywed55 Oct 2020
Yes, he was diagnosed very early. I have seen personality changes in the past 6 months to a year but I have attributed much of this to stress. His mother became ill and moved in with us about 10 months ago. We had her fairly stable health wise while living here but since her sister became ill and is now on in home hospice about 2 hours from here she has been there trying to “help” take care of her. This means nobody is taking care of her and she has been declining as well. He has been driving back and forth a few times a week to grocery shop, clean, mow, fix things and whatever needs to be done. He has been on antidepressants for about 2 years and even had the dr increase his dosage about 6 months ago. When we married we discussed what the future held and agreed that no matter what we would stay together and deal with things together. Never in a million years did I foresee this coming. We have no legal docs in place for this. Selling the house is needed to pay off some debt and something we had discussed many times over the years. His sons (4) are all in disbelief and have tried to talk him out of this. He reassures them all that he loves me and knows that I take great care of him but that this is something he needs to do to “clear his head and see what is left of him”. My close friends, family and my girls (2) who live very close are my support system. I know all this is overwhelming to him and I think that’s why he is hesitant to see the neurologist right now.
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I do not have dementia but have other health issues and BC in the last year. Sometimes I want to get in an RV and escape too. I want to escape being a burden to my husband. He is so supportive but sometimes that in itself is a burden to me. So maybe it’s not so much the dementia but the diagnosis of dementia. It is very hard to except help and I won’t do it! Ever! It helps me more when my husband just acts normal.
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Newlywed55 Oct 2020
I understand your feelings. Part of me feels like he is trying to protect me for what is to come. I love him for that but I can’t imagine my life without him. I’m sure your husband loves you and you need to let him love and take care of you. Pushing him away is not the answer. ❤️🙏🏻
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This is, I think, the youngest I have heard someone being diagnosed.

Yes stress effects Dementia. Your DH should not be the one caring for his Mom and Aunt. But fighting with him will get you nowhere. I feel one of the first things to go besides short term memory loss is the ability to reason. You can't reason with him. Evening is usually "sundowning" time. If he wants that time to himself, then give it to him. If he hasn't lost the ability to process he will.

There is no cure for this. You need to realize that he will get worse. There are stages. He will be unpredictable. Will need someone there 24/7. You will be the one he lashes out at.

Why are you selling the house? This is where he is familiar with things. Change is not a good thing. When you move, you may find some confusion there too.
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If he is open to counseling, I'd definitely find a good couples therapist. If not, I don't know if his mind can be changed at this point since he hasn't really dealt with his very profound diagnosis. He may need to be treated for depression. I wish you success and clarity as you move forward, hopefully together.
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