--Himself has some form of Dementia--It's difficult for me to accept it--and then to write about it, is even harder-- You see, Himself is a retired Doctor--- He used to have "the patience of Jobe"--- (Mom used to say that)---- So, when he acts a bit odd, I do the absolutely worst thing I could do (so I'm told!)- I argue with him---- I was told this morning, that when he gets a bit "off"--- to change the topic--just walk away---and he will forget all the hurt he has caused me----- You see, he thinks I am going to leave him--He thinks I have a man on the side--- He thinks all sorts of things--(I am almost 80 yrs old--the last thing I want is a "man on the side"!)
I called the Alzheimers Society this morning--There is only a recording--- I called his Doctor-- The Dr. is recovering from cancer-- I called a nurse at a long term care place--- no-one could come to the phone--They were in a meeting--Finally, a Lady whose hubby had suffered with the same illness called me back--She lived with this for a long time until her hubby passed---"WALK AWAY"--she told me-- "HE WILL FORGET " is what she said" she added--- So, I have a lot to learn---- "I cry", I told her-- She said, "You are going to cry more"-----
It is tough to even talk about this--- My kids don't accept this-- It is a lonely disease-- Are there any of you out there going thru this too?--just wondering---
Lord love a Duck! I do not wish this on anyone !
Didn't go through it with a spouse but with my Mom. It is very hard, but the only thing you have to remember is that it is not him but the illness. I had a hard time with my Mom at first as your first reaction is to get angry, but I did find you need to redirect or walk away. It still hurts but my Mom is gone now and I wish I had not reacted the way I did sometimes. Hugs, it is not an easy journey.
ReplyDeleteDoes he have an official diagnosis? I know there are medications that help some symptoms. Can you get an appointment w/ a specialist? Hugs ...
ReplyDeleteOh, I am so sorry that you are dealing with this. It is so rough…
ReplyDeleteThere are several support groups in Facebook for dementia. I have a dear friend who is going through this.
Just remember that you are not alone with this terrible disease. Yes, walk away and cry. You have known him for years and years and you know that this is not him talking. Stay strong my friend. It will be difficult.
Hugs and love sent. Keep writing and getting those feelings out. ❤️❤️❤️❤️❤️
worse.
ReplyDeleteMy Mom, too, went through this horrible stage where she would be mean and nasty to Dad and I (they were living here so I could take care of them). She insisted that Dad was going to ‘dump her’ (her words). It cause many fights. BUT when she was nasty to me, I was given the same advice. Walk away, change the topic, re-direct. Those strategies weren’t successful 100% of the time, but MOST of the time.
Crying . . . many days I’d get in my van and go to the local park (/12 block away) and just sit in my van and cry. I did NOT want to cry in front of my parents or the kids. It was cathartic most of the time.
My brother lived out of state and maybe saw them 3-4 times in the 2 yrs. they were here. So . . . I’d tell him things and he didn’t believe me, either. THAT was aggravating, but . . . I just stopped telling him. I KNEW nothing I said was going to change his mind. I DID have both parents receiving in-home care 3 times/week for 2 hrs. so that *I* got a break. And it was a support for me, because they could defuse some of the stress. k
Cherrie R’s advice/comment is spot on. I was told repeatedly I have to realize that it is NOT my Mom (or DAD) speaking, it is their disease. Really hard to remember when you’re in the thick of things. BUT it’s the truth. The way they were was NOT them @ all. They were loving, caring, generous (sometimes to a fault) and kind. It truly was the disease talking. It’s pure evil.
And I KNOW if my parents realized what they were saying, they’d be mortified. **SIGH** Bitter pill to swallow.
Lastly, there MAY be meds to help. My Mom was on meds briefly, but sadly, she couldn’t continue on them as she couldn’t tolerate them.
Dad, though, was on an anti-depressant and that helped smooth things out a little. NOT a cure by any means.
My dear, wrapping you in angel wings and saying many prayers. Know I am crying right along with you. I inow it is painful.
HUGS
Barb
1crazydog
I remember now yu going thru it--- with your parents Barb--I never thought I'd be doi g the same with Fred--Thank yu for sharing g all thAt--It helps me to realize that I'm not alone-Lynda
DeleteOOPS! That first sentence should read I went through this with both my parents and that was terrible. BUT going through it w/a spouse is like a knife to the heart. VERY unimaginably hard.
ReplyDeletebarb
1crazydog
So sorry to hear of your pain. My thoughts are with and Himself. (((HUGS)))
ReplyDeleteMy husband went through a period of distrust in me after his family had betrayed him very painfully. I guess it was easier to target me rather than the people who hurt him so badly. I always told him where I was going, what my plans were, and if anything changed I'd either call or text him to let him know. These were just what I did always as a matter of course because I knew that I would appreciate the same. Fast forward about 10yrs. We are battling his lung cancer. He started acting differently but only in small ways at first. We knew he had a small tumor in his brain, but only after he passed was I able to realize how slowly and incidiosly that tumor robbed us of any last moments of tenderness. I can see it in his writing to me (we wrote each other emails regularly throughout the day while he was in the hospital). It started with odd misspellings and slowly over time became more gooblegook than words. Then came the day I visited him and tried to show him pictures my kids sent us. And I realized he no longer knew how to swipe to view photos. My heart broke. I knew there were pieces missing never to be back. I cried so much when I got home. In many ways, those were our last moments The next day he drifted into a coma and passed away in his sleep. A few months later while clearing his desk I found the bits and pieces of a GPS tracking device designed to be hidden in a car. I'd always wondered why the carpet was so bad on the driver's side. I went through so many emotions. But I came to be at peace with it because I was always sent him messages if I stopped anywhere other than what I'd planned, and the GPS would have showed just how boring and consistent I've always been. I hope it gave him some peace of mind. If I could go back to those last week's at the hospital,I would have spent more time with him and less time trying to keep our business and house running.
ReplyDeleteSpend time with Himself when he's lucid. You really don't know how much time you'll have together.
Sending you love and understanding.
Hugs,
FlitterbyG
Yu are an amazing person--- Thank yu so much for sharing g yer experiences--It shows I'm not alone in this-Lynda
DeleteLynda, wrapping you in angel wings. This isn't Fred, its his dementia. You must learn to not engage but walk away, change the subject etc. Cry when you need to. I'm hoping Fred is seen by a specialist soon and that you continue getting support for you.
ReplyDeleteHugs dear lady.
Lynda I don't have a spouse but lived with my mom and sis . Taking care of them is the most difficult thing . You do need help. Get the dementia and alzheimer society to arrange meetings and help for you and hubby. You need to look after you . Sorry
ReplyDeleteI am so sorry Lynda...........
ReplyDeleteYou have to walk away and not argue with him....his mind is going and
there is nothing you can do to stop it....you will wreck your health if you don't get some kind of help.
He is not safe to leave alone at home anymore alone.
If your children refuse to believe this, get a recorder and record one
of his tantrums when he is verbally abusing you and let them listen.
If he hurts you physically, it will be too late. You need support
from your family/friends, so keep calling til you find someone to help
you.......
Hoping this makes sense. Mom was correcting Dad up until the end which caused her tremendous stress and agitated him. Walking away and changing the topic did not come easy for me. After realizing this was his new reality that would only worsen, I was able to pull this off by compartmentalizing and seeing myself as an outside observer to what was going on in my daily visits to the parents' home.
ReplyDeleteDad always took pride in his gardens, vegetable and flower, so I would ask him to show me his gardens which would usually diffuse the situation. The second go-to distraction was to ask him about his WWII experiences. They had a huge yard and most of the flowers came from other people which he would tell me about. Now, mind you, there were some days much rougher than others and I would put on a calm demeanor while there, then park my van in a nearby restaurant parking lot and sob my eyes and heart out before going home.
Mom didn't drive and Dad had always taken care of the financial business. One of my sisters gave them a file cabinet, folders, tabs and a coupon for her personal services in setting up & organizing things. What a fiasco that was and he started telling neighbors and people at their church that she came in and stole from them.
Hugs, prayers and well wishes.
It sounds like here-- sad isn't it?--- Thank yu for helping --just by talking is a huge help-Lynda
DeleteI am so very sorry about this awful diagnosis! And I hate you have to call for advice, and no one answers the phone!!
ReplyDeleteLynda, so sorry you now have confirmation that he has dementia for sure. There is nothing you can do to change it. As some have said above, there are some medications that can help slow it down but nothing can stop it. I have no real experience other than with my grandmother over 30 years ago and I didn't live with her. Your oldest son should believe it as he was on the receiving end one day. They must all help you out so you can go to the store etc. The last few years they have advertised Elliott Lake as a retirement community so there must be medical people there that can help you out and perhaps social workers or something that can provide some coverage for you when you go out. You need to find a doctor their that specializes more in dealing with it. Unfortunately there are no easy answers for this horrible disease. You have to walk away or stay quiet when he starts something. Please see if there is any medication that can help. We are here for you! Take care of yourself.
ReplyDeleteBrenda--THank yu--for caring--It helps! Lynda
DeleteOh Lynda I am so sorry that this is happening to you and Fred. Praying that you will be guided to the help you need because dear one this you can not handle on your own. Praying your kids believe you I know it will be hard for them to admit that this is true but they need to otherwise when he dies they are going to have so many regrets. Praying that you find a good doctor who will guide you and Fred through this horrible disease. Praying there is medication that will help him. Praying that you have all you need to deal with this situation. We are here for you my dear friend. My heart aches for you and Fred. Like everyone says it is not Fred who is yelling it is the horrible disease and if he knew he would feel horrible.
ReplyDeleteJan I really appreciate yu telling me this-Lynda
DeletePrayers for you and your husband. Has the doctor who paid a visit gotten back to you? Maybe googling for information will be helpful.
ReplyDeleteDear Lynda. My heart is full of sadness for you in your current journey. It’s tough and oh so sh1t. (My girlfriend here taught me that last week. She would never say a rude word but allows herself to spell SH1T - and that feels better than the real word - she has an intellectually disabled daughter with autism so is not aware of her swearing in code ).
ReplyDeleteIt’s so tough to see your beloved Fred turn into the man you don’t know and cannot understand. Am sending you the best hugs all the way from WA.
There are supports in EL I am sure. Join a carers group and get respite regularly.
You and Fred are on my prayer board. Xxxx
Thank yu--so much! Lynda
DeleteIt's terrible. I couldn't do it with both my parents so I sought for help, either an elderly care facility for patients with dementia or someone who takes complete care of them.
ReplyDeleteHi...Kind of strange opening up..but yes,my husband has it..a little over 6 years now. The pandemic hurt...he lost some ...not all vocal skills...he never gets angry but now and then he remembers things differently...maybe i'm visiting, or he was with a brother...at first I was shocked. I personally don't walk a way...to each his own. I talk to him and talk about what he is thinkig and why it is not true. He snaps out of it, sometime quickly and a few times an hour....and later he'll joke about it..we laugh a lot..I do cry, but not a lot and usually alone. He is sooo sensitive and feels bad that he is putting me through this. I just tell him..it's not you it is your brain...getting a good work out really helps. He is on meds., and vitamins, turmeric, coconut oil. He is younger than your husband He is only 67. I haven't gone to any support groups yet...Hang in there
ReplyDeleteThank yu so much for responding--It helps a lot! Lynda
DeleteI am so sorry, Lynda. Do reach out and find as much help as you can. Keep reaching out until you find it.
ReplyDeleteMy heart breaks for you, Lynda. My grandma was that way and would try to pick a fight with everyone. We were told the same thing walk away and let it be. The sad thing is because they'll forget and that hurts. I'm glad you reached out to talk to someone about it. (((BIG HUGS)))
ReplyDeleteOh Lynda, I am so sorry you are having to live with this. Himself has been such a good partner to you for so many years. My grandpa had Alzheimer's and I know it was terribly hard on my grandmother. At one point he became ill and she didn't even want to visit him in the hospital. I'm glad you are trying to find help for yourself. My prayers will be with you.
ReplyDeleteI am sorry, Lynda. Dementia is heartbreaking, cruel and hard to accept. But, knowing sets the stage for you to think about how to move foward. At this point you look to be and are the person to do what is best for your husband and for yourself and make the decisions which will protect you both physically, emotionally and financially. Hard as it is, you are able.
ReplyDeleteI lived through this with my grandmother and with my mom. My mom, part of the time, thought my dad had someone else. It is 'normal' for dementia patients to truly believe things like this and to act on it, particularly depending on the type/cause of dementia and their stage.
My mom said some pretty awful stuff. She was extremely fearful and would lash out pretty viciously because of what she truly believed we or 'someone' was up to. (She met me at the door with a loaded pistol one day because she was so fearful of burglers. Fortunately she never forgot who I was so as I remained outwardly calm, 'played along' and reasurred her that I'd run off the folks lurking outside scaring her I was able to 'put the weapon away for her' with no tragedy. After that my dad took me seriously about locking up ALL the weapons and not just hiding them.) If at all possible you do need to 'play along' or walk away, not correct. When dementia patients get really upset, they don't remember why but sometimes the feeling sticks with them and makes the day more difficult for them and you. (While it is not fully understood, there comes a disconnect/skewing between their sensory input and the brain, so that you both can see/hear the same thing and what they perceived will be inaccurate but what they really saw and heard, so you telling them differently to them is a lie, hence distrust, anger, fear, etc. For example, a shiny floor adjacent to a carpet or rugline area could be seen by them as water/flooding or a stairstep ... leading to panic or a fall.What their brain tells them makes no sense to US, but it is real to them.)
Please be persistent and timely in getting help for yourself and your husband. I'm pasting the link for the American Alzheimer Organization. They have some helpful information on their website. https://www.alz.org/ Hopefully you can get a return call from the organization you called; you may want to call regularly until you hear back.
I know this is awful. I know your kids should step up and help. But if they will not and even if they do, please please please for yourself and for your husband be pushy and get the help and information you need as rapidly as possible. Ask for referrals to appropriate doctores. See an attorney who practices estate law. As his wife you have the final say in how things are handled for his best interest and yours. If your children are having a hard time accepting what is going on, you need to have the information and the grit to do what is needed whether they agree or not. Information is the power to make the best decisons for his health and yours. Taking care of someone with dementia is grueling mentally and physically; often the caretaker dies before the patient due to the stress. I know this sounds dire and I sound bossy, but I have lived through it, had to help my dad through it, wound up having to help him deal with shenanigans of my siblings. It was difficult getting things done sometimes because medical doctors are accustomed to treating the body and insurance companies are not geared toward covering some of the things you may need. Some of the in-home care we received was short-term and covered by insurance short-term only because my mom started having health issues requiring hospital stays.
Please forgive me for my bluntness, but I'm concerned for you both. I am praying for you.
Lynda, I am so sorry to hear this. I will tell you that I have had experience with caring with people with dementia. I had seven members in my family that had struggled with this, aunts and an uncle and most recently my Mom and sister. The last job I had was with Home Instead Senior Care for which the majority of my clients were dementia patients. I encourage you to see if you can find a company that provides in home services just to know what they do and if this service would be a good fit for you and Himself. You can get medical or nonmedical help. The nonmedical is an option for respite care if you should need to get away, or provide help around the house or even help with Himself. This is an option for keeping him home as long as possible. RaeRaeLee66 provided very good information and advice.
ReplyDeleteKeeping you and Himself in my prayers.
Beth Mosko
So sorry that this is happening. I have not been through this myself, but I am sending hugs and prayers for you.
ReplyDeleteLynda, my mother is in one of the later stages of dementia. She lives in a memory care facility. I don't wish this on anyone, and I wish you and Himself weren't going through it either. My mom isn't the person she once was, and maybe it's easier to think of it this way - it's not her. Hugs!
ReplyDeleteI am sorry for yer Mom--- and it must be hard for yu--So many of us going thru this-with family members--Hugs, Lynda
DeleteI didn't see this until this noon. My heart goes out to you... so hard to deal with a loved one "slipping"... they call Alzheimers "the long goodbye", and talk of good days, and bad days.
ReplyDeleteI am so glad your son #1 is closer to you now, physically, and can help out. But I also hope that you find ways to have respite in being that primary care giver.
the long good bye-- That is so true Barb-Thank yu for writing- Lynda
DeleteSo sad! My son in law and his mom are going through it with his dad. I believe you Have received very good advice.
ReplyDeleteWe will be praying for both of you!
Praying and sending my love and support.
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