Early onset dementia

[Taxman59]

My wife has been having bouts with depression and paranoia. She was admitted to the hospital and just released. At 54, the Dr. doesn't want to diagnose early onset dementia, but based on what I have been reading, that is what she has. My question is how do you handle watching the one you love crash, or be helped by drugs that leave her with a flat affectation? I see the person I married occasionally, but mostly someone else (either paranoid or no emotion at all). I retired last year, and I thank god that I have been here for her, but 25-30 years of this with it only getting worse is a daunting task.

Has anyone else dealt with this and what did you do for your own mental health?


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[Sunset]

This sounds very terrible, I hope it turns out to be caused by something else (medicine ?).
I would suggest looking for some self help or support group that is involved in this, so that you can get lots of advice, and have people who understand the issues you face.

I'd also suggest if you have any guns to lock them up well or remove them as depression and paranoia both can lead a person to seriously bad actions.

 

[Huston55]

Taxman-

First, I feel for you. I've experienced similar circumstances with a parent & other family members. My advice to you is:

1. Get the best medical treatment (i.e.: the best doctor) you can immediately. Do not settle for anything less than the best.
2. Do not accept the notion that your choice is drugs & a zombie or, no drugs & no improvement. Modern meds are very effective but, you need a top notch Doc (see #1 above) to get into the right protocol.
3. Take care of yourself by reading up on 'spouse' self-help and/or joining a support group.

I wish you all the best.

 

[ivinsfan]

Taxman-

First, I feel for you. I've experienced similar circumstances with a parent & other family members. My advice to you is:

1. Get the best medical treatment (i.e.: the best doctor) you can immediately. Do not settle for anything less than the best.
2. Do not accept the notion that your choice is drugs & a zombie or, no drugs & no improvement. Modern meds are very effective but, you need a top notch Doc (see #1 above) to get into the right protocol.
3. Take care of yourself by reading up on 'spouse' self-help and/or joining a support group.

I wish you all the best.

+1 and number 2 is really important...sometimes it's the mix of drugs being used that is the problem. I'm not trying to be an armchair doc,, but at 54 and probably just coming off of menopause the hormones changes and adjusting to them mentally can be massive. I remember having hot flashes at night and having some days that I literally felt some stranger had taken over my head. This happened after the actual menopause which really threw me off because I wasn't expecting the symptoms to get worse. You might even try to get a referral from your wife GYN doc to someone who specializes in this area.

 

[MichaelB]

Taxman-

First, I feel for you. I've experienced similar circumstances with a parent & other family members. My advice to you is:

1. Get the best medical treatment (i.e.: the best doctor) you can immediately. Do not settle for anything less than the best.
2. Do not accept the notion that your choice is drugs & a zombie or, no drugs & no improvement. Modern meds are very effective but, you need a top notch Doc (see #1 above) to get into the right protocol.
3. Take care of yourself by reading up on 'spouse' self-help and/or joining a support group.

I wish you all the best.

+2

A support group for you is critical. You might look around for a workshop on "Caring for Caregivers", these are sponsored by different non-profit organizations. Both can be very helpful.

A Geriatric Psychiatrist will confirm whether your DW has early onset dementia, and if you're not happy with the current physician or the diagnosis, find a new one. It's important to have a good working relationship with the physician and you need to trust his or her diagnosis and proposed treatment.

 

[MRG]

I watched my DM with the disease, not early onset, that seems particularly cruel.

Great advice already. My docs nurse suggested reading "The 36 Hour Day". It gave me a different perspective on DM's world.

It's ver important for the caregivers to take care of themselves. Best wishes to you and your DW.

 

[ivinsfan]

I watched my DM with the disease, not early onset, that seems particularly cruel.

Great advice already. My docs nurse suggested reading "The 36 Hour Day". It gave me a different perspective on DM's world.

It's ver important for the caregivers to take care of themselves. Best wishes to you and your DW.

Right but at this time the dementia is self diagnosed. 36 hour day is a good resource but I think the OP should devote the time to more medical pursuit of a firm diagnosis and possible help.

 

[MRG]

Right but at this time the dementia is self diagnosed. 36 hour day is a good resource but I think the OP should devote the time to more medical pursuit of a firm diagnosis and possible help.

+1000
Definitely, I felt as that point was already covered. Not sure what memory care is like where the OP lives but a diagnosis by an expert in the field is the first step. There are a few conditions that could appear as dementia to most folks.

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[Blueskies123]

You need to talk to a doctor about Aricept. Everyone I know with dementia has used this drug. It is not a cure but slows its progress.
Aricept oral : Uses, Side Effects, Interactions, Pictures, Warnings & Dosing - WebMD

 

[Souschef]

I am so sorry this is happening to you. My late wife was brain injured and I was her caregiver for 12 years. It can be tough, and you have to take care of yourself.
I agree about finding a support group, either in person or on line.
My present wife's father had Alzheimer's, and she recommended that same book.

 

[Bestwifeever]

Right but at this time the dementia is self diagnosed. 36 hour day is a good resource but I think the OP should devote the time to more medical pursuit of a firm diagnosis and possible help.

I agree--plus I can't imagine how difficult it has been for the OP with his wife's current diagnoses of depression and paranoia.

 

[Blueskies123]

The most important first step is get a proper diagnosis from an expert in this area.

 

[Capwest28]

I know exactly how it feels to have a loved one who is having neurological issues like you describe. My mother had Lewy Body Dementia and suffered awful paranoia as well as delusions and hallucinations. A good neuro who specializes in these type of disorders is critical. Depending on your location a clinic associated with a major university might have a specialty service. Please get her evaluated by someone who can correctly diagnose her and begin treatment if appropriate. I would suggest that you not focus too far ahead as it can be overwhelming if you are the broody sort as I am. Make sure all physical problems are eliminated as causes. Becoming a sleuth and learning all you can may give you a sense of "doing something". Additionally, evaluate any medications or supplements she takes as they can be hidden sources of brain fogging. You are not alone. Keep us posted.


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[mamadogmamacat]

The most important first step is get a proper diagnosis from an expert in this area.

+1000

Early onset is not as common as the much more typical age 70+ or even 75+ onset. So, this could be something else, and I second the comment about a possible relationship to menopause. OP did not mention a family history of early onset, as there is often one. If not, all the more reason it could be something esle.

 

[mamadogmamacat]

my only direct personal experience is with my father, diagnosed at age 80, and he died at age 82. he was living with me until six weeks before the end, which included some hospital stay and then memory care unit. During those 2 1/2 yrs, i was often either his mother or sister to him. Having a support group, and respite care you can trust, if even for only a few hours here and there, or 8 or 10 in my case as i was still working at the time, is essential. The other essential is keeping your sense of humor, and a measure of flexibility. If dad thought i was his mom and started to pitch a tantrum because he wanted pancakes for dinner, well what the hay, I made pancakes and sausage for dinner.

 

[Letj]

What other symptoms besides paranoid and depression. Menopause can be cruel. I started getting anxiety and panic attacks and sleeplessness. I recognized that it was menopause related since I had not experience this before. I started hormone replacement therapy and within a week got my life back. It really doesn't hurt to start this as the first course of action before considering drugs.


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[CountryGal]

Hormones for a woman simply crash with menopause. I would find a functional medicine doctor or anti-aging doctor that is experienced with hormones and get them checked out first. Hormones in general can cause a variety of ills if they are 'off'. Between Thyroid, Sex Hormones, and Adrenals, there is a lot that could be going on. This is a major contributor to depression. Another is "leaky gut". There is a direct gut to brain connection and if something with the digestion is off, it can also cause issues.

I do hope you will look into this angle first to help your wife. Doctors like to medicate and sometimes that is not the answer you need. Wishing you the very best!

 

[Sarah in SC]

I also will chime in with the menopause concerns. Having entered perimenopause this year, I can say it is absolutely awful and I'm on the front end of it. If there is any chance her symptoms might be related to hormone levels, it is definitely worth checking out.

 

[Letj]

Unless early onset Alzheimer's runs strongly in your DW's family, I doubt that's the problem. Getting on drugs for mental illness right away can cover-up the real issue and can lead to a lifetime of drug dependence for something that could easily be a result of hormonal changes. While I did not suffer from depression, I certainly had some serious issues as I mentioned earlier and had I considered drugs as the first alternative, I would certainly not be as healthy as I am. Getting on HRT was the best thing ever and certainly beats anti-anxiety drugs.


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[KM]

Be absolutely sure they have ruled out a brain tumor. A close friend went through this with her husband. She was seriously concerned, as were others, that it was early onset dementia. I'm not sure why....but something else prompted some form of brain scan. Turns out he had a benign brain tumor. One surgery later he was pretty much back to his normal self.


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[Teacher Terry]

as others have said get everything else ruled out first. Having said that a good friend of mine got it at 48 but everyone thought it was chemo brain due to all the surgeries/chemos she survived. At age 62 we took her to a neurologist and she had dementia. He said that what I described to him from years before were early onset even though know one in her family ever had it. I really hope for both your sake that something else is wrong. A year ago I had to put her in a care home as her husband was dying from cancer. Other illnesses do mimic dementia so find a good specialist.

 

[Taxman59]

Thanks for all of the support and positive comments. She is in the end phases of menopause, and that caused some personality changes. I will talk to the Dr. about it to see if it is a potential cause. The mental illness runs in her family (father, his sister, mother's sister, and her sister), so she is likely to have the genes for it. (It runs in my family as well, so my kids are screwed genetically speaking.) I will talk to the Dr. to see if there are other possibilities, and if the diagnosis is early onset dementia, I will try to get a second opinion.


I also wonder how our LTC plan will consider her health - she is having trouble picking out clothes to wear (Shirt? Underwear? does it need to be clean?) and she doesn't eat unless I tell her it is time to eat. The plan has unlimited benefits after 90 days (an old plan that is fully paid up), so I wonder if I should start that planning as well.


Counseling for me is the next step. I am lucky to have several friends to help me and a strong family (3 sisters who will be there fore me), so I have that working for me.


Again thanks for all the advice.

 

[Teacher Terry]

The clothes thing and not eating unless told to all sound so familiar. While some people live a long time with dementia I have seen fairly young people die within a year or two. Regardless I would join a support group and I am glad you have good family support. Some good homes have a few years waiting list so it might be good to look at that too. I have seen people try to keep their families member home but eventually it just becomes too much. People with this disorder (if that is what it is) are often up all night and sleep all day, etc. Explore all your options and I am sending lots of light and positive thoughts.

 

[Derslickmeister]

I'm right there with you brother. My wife's' mind and personality were both robbed by excessive chemotherapy as "treatment" for her ovarian cancer 6 years ago, it's been six years of pure hell. I wouldn't wish this situation on my worst enemy. She is only 50...

 

[Teacher Terry]

That is why my good friend got early onset dementia at 48. She had stage 4 ovarian cancer about 6 times which meant 6 rounds of chemo and 7 surgeries. So while they saved her body now her mind is gone. However, she had a lot of good years that while she could not work she enjoyed her life until about age 60. Her DH died of cancer last year and I am her guardian. Her cancer has returned and I am not treating. It is such a sad situation.