Support freely granted, Secouya. That is one humdinger of a curve ball life just threw at you. Lean often. You will need every ounce of support you can find.

The most direct personal experience I have to share is with the aversion to touch. My 5 year old foster daughter was 3 when she came to me and suffering such severe attachment disorder that I could not so much as take a pee without her clinging to me while I did my personal business. My aversion to touch was triggering flashbacks more often than my caregiving skills were capable of processing. The sequence has stabilized and gotten easier to manage, but my reflexive reactions still threaten to further traumatize the child and myself on a routine basis.

I cope by treating ^it^ like exposure therapy. Radical acceptance helps me to be less reactive while I help her through. Leaning heavily on my peer support network helps me to process and stabilize the sequence as it develops.

But that is me and our circumstances are radically different.

Steadying support while you sort your own.
Breathing with you. . .

Oh Secouya I am so sorry. Sending you support and prayers.

Ther'es no words for this, only what I can offer as (ignore it) advice: You can't take care of him. Not alone. Not and survive it yourelf. I learned this the hard way with my mom.

So... find respite care. Find out if you qualify for aid to pay for a home health aide to watch him. Find out how fast he'll deteriorate, if it's possible, and for heaven's sake, I repeat, find some help to watch him. He'll be scared, yes, but you cannot do this alone. You shouldn't. Please, take a puma's advice. And start looking into care facilities for him. It sucks, but it's necessary. Ask social services to help if they do that where you live (they don't where I live). Call his family, and ask that they help even if they're not close by. At least maybe you'll fee less alone?

but above all else, keep venting, okay?

Puma purrs and power.

I'm really sorry to hear this news about your husband's dementia, Secouya. I have some experience with it, and it's tough. I n my post-grad clinical internship and residency training parallel to that of a medical doctor on my way to becoming a professional hospital chaplain I served a year long clinical internship on a hospital's Alzheimer's unit.

Most of our patients were in the advanced stages of dementia, so most of my support was with their families. It was harder for them, really, especially for the wife of my patient George, since she visited him every day around 4pm and yet he had ceased to be able to recognize who she was. I made a point of being on hand for her after those visits because she then grieved the loss of him already as if at his funeral. It was tough for her, so I hope we can support you if needed in the same way.

As for my patients themselves, as you observe here with your husband, short term memory loss was greater than that of long term memory. I found during that year that songs from childhood and youth brought back memories that family could share with the patient. I tried out songs from each patient's era, and as one hit with a patient I added that song's title to their chart. Then on my next visit, I played that song to the patient to start with. It was amazing how some patients who were uncommunicative woke up. Some even sang along. Singer Glen Campbell could even perform his songs live for audiences, though off stage he was in deep dementia.

It didn't cure them, of course, but it was a bridge we all cherished. Sending you support as you process this news, my friend.

I'm really sorry Secouya. My grandfather has dementia and I've been doing a lot of the caretaking (he also has a catheter because he lost the ability to urinate on his own).

I don't remember where you live but you have to see about home health care. My grandfather has medicare and a secondary insurance (BC/BS) from his retirement. The doctor evaluated him and determined that there are things he can't do on his own and needs help with and ordered home health care. We have nurses and doctors and various types of people coming several times a week. We have a nurse who bathes him a couple times a week. We also got his meds set up to come through the mail, prepackaged/labeled per day. He had an occupational therapist and speech therapist coming to help him with eating and walking. It's a lot to deal with. We also split up responsibilities in the family. Me and my two aunts help with things around the house and taking my grandparents to dr's appts.

I'm really sorry you're having to deal with this. I don't think you're very old and I assume your husband isn't? My grandfather is 89.

Biggest tip from someone who was a full time caregiver of someone who had 5 TBIs (Traumatic brain injuries) And was quadleplegic, (yes i know big difference but same in many ways too) Was accept any and all help you can get, and I stress what Leo said Get Respite care!!!!!!! Does your insurance cover any CNA help? Any help at all with home care???? If you can get the help take it and get out of the house when you can you need time away from the situation as well! I burned out BAD and got suicidal at one point! You need to build your support network up as much as possible! Sending lots of hugs and prayers, i took care of my late husband until he passed. 19 months i was his fulltime care giver and then i helped with my dad as well so mom could take breaks!

So sorry to hear about your husband's dementia. Sending support and prayers. The closest experience I have is seeing a family member from an older generation being taken care of at home. They were losing their physical abilities and not their cognitive ones, so it's different that way. But, there was a whole team of people involved. There was at least one caregiver from an agency. There were at least two family members living in the house (though one of them worked full time).. There was a visiting nurse who I'm not sure if she was the same as the "bath lady" or not. There was a man his age from his church who came for two hours every other week (and I think that man's wife took my family member's wife out for a couple hours). There were family members who came when they could which for some was maybe once a week and for other's may've only been once or twice a quarter. Between all the paid helpers and the volunteer and family helpers they muddled through. But, it went better for having more people to carry the load.

Even though your situation is a little different I think the advice about getting all the help you can is really best, even if some people can only help out sporadically it will still give you a break. And your county or state human services department may be able to provide some of those services for him.

Thinking of you again today, Secouya.

(((((Secouya)))))
You have my complete support, I’m so sorry. Many years ago I had to watch my poor dear grandmother go through this .... well her diagnosis was dementia with Lewy bodies. So hers was the dementia but with the Lewy bodies it was added with hallucinations& other stuff, so I don’t want to tell you all my experiences because it’s a lot & I wouldn’t want to give you the wrong impression if he won’t experience the Lewy bodies symptoms. Sorry I’m rambling, but either way .... as far as someone to help with guidance to your options & things that may get thrown your way, maybe consider if you can get an elder care lawyer or a lot of them have free consultations. & like everyone says any help you can get try to take because this is too big for one person to deal with (Btw of course take what I say that’s useful & if the rest doesn’t apply or help, just ignore it too)


I experienced many different things with my grandmother before & after she eventually had to go to a hospital unit for patients with her conditions.

I’m gonna tell you some things that helped a little but to be honest things could change day to day & moment to moment.

- giving her different kind of pillows & stuff to put under her arms or have her hold on to seemed to help when she was laying down & needed to hold onto something especially if it’s your arm or hand & it starts going numb or & you needed to get up or go to the bathroom or in your case maybe that could help at night for you, if the pillow thing would help maybe he could hold on to it instead of you sometimes when you need a break. (also we went through all different sized arm & couch pillows to try to find the rite ones which changed day to day too)


Little things that could help sometimes are paying attention to feelings not facts. Like if she was trying to ask you something that made no sense or would seem scared and ask me something like “Did you take care of that?” learned over time instead of asking “take care of what?” & her being confused & getting more upset the more I tried to figure it out ..... over time you would notice that if she asked me something like that & she didn’t know what she was talking about I would turn to her & assuringly tell her “It’s okay I took care of it don’t worry” & smile at her in a calm way to try to help her feel calm. I wasn’t like lying to her or anything it was just much easier to relate to the feelings instead of facts, basically I could see she was scared & I wanted to reassure her no matter if she was making sense at all. (Like I said even this stuff could change day to day & as things progressed sometimes it was a lot harder)


I also experienced with singing with her & even if she was in no way lucid, for some reason if you would start singing a song that she knew ... out of nowhere she would start singing along, seeming calmer & she for some reason would remember the words to the songs she used to know. I don’t know what it is, there really is something about the music with that.


I have no idea though because so many cases are different from person to person, so I’m so sorry if nothing I say helps. & as far as my grandmother was concerned even at the Alzheimer’s unit she was different than the other patients because that damn Lewy bodies disease, she would get so scared & see demons & try to run away a lot both before & once she was at an adult home. Sometimes she would know who I was & sometimes not, it was hard because in the insanity of my childhood she was one of the only ones there for me sometimes & even let me live with her for some years when I was a kid. So seeing this strong kind hearted woman going through this & watching this disease take over was painful amongst other things. (sorry for the run on sentences & ramble response to your post Secouya this is just a tough subject for me & also a subject close to my heart)


No matter what, if you ever need someone to talk to about this you are welcome to pm me, & or please keep reaching out to us for support, or venting or whatever we can do to be there for you


Sending you support, strength & many prayers
Gentlest of hugs <3

Secouya,

I know what Your going through,
My grandmother had dementia, Started when she was out somewhere, and forgot how to get back home.

Everything was fine when she was first diagnosed, she knew everyone, was eating.....etc (except, she did keep telling random stories about past event's) Both her and my grandfather would come to the shore with us for a week, No sooner then they got here, she would ask My grandfather if was he was ready go home? he had to remind her that they just got here.

My Grandparent's were able to live independently........for, I'd say 10 yrs after my grandmother's diagnosis, Then my Grandfather, lost the ability to take care of both of them, So, we had to put them both in a home (pretty much hospice care) My grandfather fell physically ill even before that, He was in the Army (WWII)

My Grandmother, knew us all in the beginning,
One day my brother and I went to the home to see her, the staff said "look whose here to see you" At that point she didn't know who we were, and wasn't verbal anymore,
But, when she was still verbal, my mother would go in, But, she didn't even know her, My grandmother knew she had a daughter and said: "I have a daughter about your age"
She didn't know my mother, But, knew, And could say all her sister's and brother's names.

So, It's hard to see the person that way as the disease slowly progresses, I also think It's Important, And is probably normal for You husband to want to hold your hand/touch for emotional support, For that person to know someone is there, and they care,

My Mother and Aunt slept in That room with my grandmother,, And my cousin called my Mother from the home, And my Mother could hear my Grandmother moaning in pain, As she died,

That person just want's to know that someone is there that cares.
I'm sure Your husband is scared, and needs/want's You to be there for him.

I know You may not like to be touched, But, he need's that right now.........Like the hand of God coming down on us telling us not to be afraid.

God Bless You!

Huge hug Secouya.... I am so very sorry that you and your husband are going through this

I moved in with my mom and dad when she had Alzheimer's and it's one of the hardest things I've ever been through

And I am also so sorry to read how badly you're being triggered.......I wish I had some great advise to give.... I just know how very hard it is.....

If you're unable to get out now and can have a community health agency or someone you know personally to come in and for you to get out on your own regularly I would do that..... You need some time for you

I think lilmissy might have a good idea with giving your husband something to hold onto for support

Gentle hug and a blessing .... xo

Sending you heartfelt support again today, secouya.

Thank you so much for your support. It means so much to me. Right now is really tough for me. My brother in law drove down to see my husband after I talked to him about the diagnosis. Right now they took the dog for a walk so I have some time to relax. All your ideas are great. I am going to see what his neurologist recommends we will see her soon. I have a disability attorney, she’s a friend that I have had for many years. She filed for social security disability and is handling all the details for us. I have to still work with his company to see if he will have medical benefits after he retires, if not I can keep him on long term disability for a year and hopefully get SSDI and Medicare. You are all right about him changing from day to day

. I will try the pillow idea Lilmissy.. I will also check into community health and support to help with his care because I have no one to help. .

Thank you all for your excellent ideas for being here for me. Your support really helps.

I lurk here. My Dad had vascular dementia. Get some iron on identification tags for his clothing and coats. You can buy them online. They can be big enough to include names and phone numbers. Ask the Alzheimer's Foundation for help. Consider a medical ID bracelet that is difficult to get off too. You put it on the *writing hand* so it becomes even more challenging to remove. See: medicalidfashions.com

I'm so sorry that you are dealing with this diagnosis. Dehydration is an important consideration too. It can make behavior worse. My Dad liked sherbet and popsicles. Watermelon is a very good source of water. Drip Drop is a powder to restore electrolytes. It comes in quite a few flavors and is more palatable than Pedialyte. Amazon has it along with most drug stores.

Redirection can helpful when agitation happens. We kept a jar of different coloured poker chips on hand. Spill them and ask for help sorting them by colour. Usually they will get absorbed in the task and forget the trigger that caused agitation. My Dad folded towels as a form of redirection too. And, pick your fights. If wearing PJs for the day under regular clothing is appealing to him just roll with it. Not everything has to match or be perfect. Comparing present day to how things used to be is not going to help either one of you.

Ask for help. Take breaks. Being a caregiver is very draining. My mother did it for 12 years Sending support and a hug.

You're never far from my thoughts with this day to day, Secouya. Glad your brother in law took your hubbie out for a walk with the dog so you could have a break. I can only imagine what an intense time it must be. It's good news to hear that you've got that attorney friend to help you cut through some of the red tape for getting the resources you need going forward. Sending support from here for today again, my friend.