My husband was diagnosed with dementia in March, 2019. He is 71 and I am 63. I have been noticing some decline in memory; but, the past few weeks have concerned me. He has accused me of stealing money from his wallet and he is hiding things from me. We have a beautiful home we built together and he constantly states it’s his-nothing is mine. Today, I noticed he was looking at me differently then asked, “I’m sorry, but who are you and do you belong here?” I knew this day would come and it was devastating. I immediately brought out photo albums and reminisced of our time together. I calmly assured him he is loved and I will be with him always. He then admitted, for the first time, something is happening to him he doesn’t understand. I explained how dementia progresses. But, I still don’t understand why it’s only me he doesn’t remember. Any advice would be appreciated.
A: "For some people with dementia, the gradual loss of recent memories means the person may still remember you, but expect to see a younger person in front of them. In others, the part of the brain that is responsible for recognizing faces can become damaged. This is referred to as 'proposagnosia'."
Here is a link to a helpful article on the subject with tips about what you can do:
https://www.dementiauk.org/get-support/understanding-changes-in-behaviour/things-to-try-when-someone-with-dementia-stops-recognising-you/
It can happen that your Dh will have good days & bad days, too. My mother is 94 with advanced dementia; she calls me her mother. She has days where she believes her mama & papa are alive and others where she's almost her old self. Every day with dementia is totally different, keeping us off kilter ALL the time! My mother lives in a Memory Care AL, and I will tell you, it's been a real Godsend to me b/c it's just too much to deal with advanced dementia at home, for most people. She gets a GREAT level of care in MC and I go visit her on Sundays, so it works out well. You may want to look into Memory Care for DH as well, for down the road, so you have a Plan B in mind if need be.
Good luck!
I explained there were only the two of us and that I am the upstairs girl. He just smiled like he was humoring me.
I am alternately the upstairs girls, the person in charge, his high school girlfriend, and that other one.
His caregiver told him I was his wife named Maggi and he told her he needed to see proof.
So, my advice is to go with the flow. His brain is broken. He is not the man you married anymore, but you have all the memories of all the good times. That's what keeps me going.
Accusing you of stealing is common as the dementia gets worse. It may be something that medication can help with? I'd talk to his doc. He appears to be declining into a new level of dementia, IMHO.
As you're seeing, he is not himself anymore. As I have learned here from other posters, his brain is broken. You have to learn to NOT take it personally. He is not the man you married anymore. I'm sure you are grieving and this is a big loss. Especially at such a young age.
Regarding why is it only you? Basically, who knows? Dementia is a cruel and unpredictable disease. You can't expect to make sense out of it. The best you can do it learn how to roll with the changes that will continue to come your way.
I hope that you are getting some in-home help. You need to have some time and experiences away from your husband. As things progress, you will also probably need to consider when/if you will need to place him somewhere where he can be monitored 24/7. It's a 24/7 job and it's rarely feasible to do that at home. Not without lots of help anyways.
So sorry for this difficult situation you are in.
I know she still knew who I was because a staff member took a pic when I was dropping off supplies and showed mom. She asked why I didn't come in, so clearly she still remembered me. Sadly before that and after the stroke I did try some visits (one outside, one later inside after the stroke.) Between dementia, poor eyesight, limited hearing, masks and keeping distance, it isn't clear she even knew I was there. The picture indicates she would have, without the masks. I regret not taking it off and getting up close during that last visit.
Before the virus, my daughter wanted a pic, so we had someone take one of the 3 of us. When I showed it to her, she asked who "those girls" were, indicating the two of us! Then she asked if that was Nana, pointing to her image and referring to her mother. So, her own self-image was distorted too. She'd also forget she wore a hearing aid. When I'd ask where it was, she'd say I don't wear one. I'd find it in her room and bring it to her. Then it was "Where'd you find that?" Most likely that hearing aid was probably just coming into the picture around that time, 40 years ago, so she'd forget, but then remember!
So, perceptions do change. Recent memories are lost, just like the short term memories. It isn't just forgetting the recent times. Over time more and more recent memories are lost, but longer term memories, including parents, childhood siblings and homes, etc. stick around longer. Eventually even those are lost.
"But, I still don’t understand why it’s only me he doesn’t remember."
and
"It’s funny, he remembers his early childhood. Memories of his mom, dad, and siblings. Places he lived and good times growing up with his brothers. He even remembers his ex-wife."
More than likely it ISN'T just you he doesn't remember. Has anyone else come by to visit? Does he have children? Do his siblings visit? Old friends or neighbors? Because of the virus, it's probably just the two of you. Once it is safe to have others visit, try that and see what happens.
"I just wish I can know where I exist in his memories."
Given you've been married 32 years AND he remembers the ex-wife, you can likely peg his "life" at more than 32 years ago, just as I was able to peg my mother's "life" at about 40 years ago. Asking the right questions might help bring his current "life" into perspective.
"I guess for now I can be thankful for the good days and not dwell on the bad."
Yes. Even if he doesn't know who you are, so long as he is agreeable and accepts having you there, go with it. YOU are the keeper of the memories now. Cherish them. If he's having a bad day (or hour or week, etc), go with the flow. He accuses you of taking his money, just say you set it aside for safekeeping. You'll have to figure out his hiding places, so that if he asks for whatever he's accused you of taking, you can locate it and present it to him.
If there are other family members or friends and neighbors you were close to, I would try the "test" when it is safe to do so. Have visits with just one at a time and see if he recalls who they are. He might not recognize his own siblings, if his mental image is a 10 yo, not an older adult! You may find that you aren't the only one he has lost memory of.
The hardest thing I endure in my everyday struggles helping mom take care of my dad who has dementia, is watching my mom suffer along side him. They have been married for 65 years. It’s hard, as his daughter, but, it is sooooooo much harder on Mom. It has to be so much worse for you, like mom, to be so deeply in love with your husband and watch him become a stranger right in front of you. It is heart wrenching to see the pain that you feel.
it will eventually happen to mom the same thing that happened to you. It has already happened to me. Even though I’ve been back home for a couple of years now, here with him everyday, he has forgotten who I am. :(
I wrote this poem I would like to share with you:
My daddy forgot my name today
It seems so strange to say
This day became eventual
As daddy fades away
Letters on white paper
Not etched into his mind
Just a word, just a word
A word he could not find
Repeating my name
Five, Ten times... gone
Trying to grasp and keep it
Asking, "What went wrong?"
Gone... but forgotten
Blurry time and space
What's in a name, Dad?
See the smile on my face?
We put our trust in God
One hour at a time
We cling onto Dad's spirit
As time erases his mind
Our love knows his heart
A heart that's strong and true
We remember his strength
And the things he used to do
We treasure every moment
We treasure every smile
From dawn to time for bed
Facing each and every trial
Outside a storm is brewing
The world is in a hurry
Unkind words and heartbreak
Stress and work and worry
In the arms of God,
Where we are living still,
Peace returns, enters joy
Blessings are so REAL!
My Daddy forgot my name today
And, that's OK with me
Believing in what God has planned
Is all we will ever need
Hearing those words from the one you love is devastating. Having a support group to know you aren't alone is helpful...at least I think so.
Take care DonnaMarie.
Bottom line:
This is no picnic 🧺
HUGS 🤗
I am touch by your overall concern for husband of 32 year.
You sound like a faithful women of your marriage vows ;to love unconditionally.
Now is the time to take care of yourselves “first”. Seek resources pertaining to this aging disease,which will be like a rollacoaster ride for you,your husband and all whom involved in his life.
Establish some me time for yourself. This will help to keep your focus on you.
Your husband is relying on you:therefore finding ways to build your strength,can help you.
I do pray that you find Godly wisdom. Try mediation,jouralling. Keep coming to this web site.
You will find amazing people whom will support you!
Have a peaceful,pleasant day,🙏🏾. God bless you and your family.
Be brave, take care of yourself. Keep a n emotional distance from this terrible disease, but love the person. (All difficult, I know)
Now the other thing I want to say is more difficult. If you haven’t already it is time to have a plan I place that you can put into immediate action in case he becomes too much for you to handle, I mean this in the safety realm. It doesn’t sound like his body is keeping up with his mind in the deterioration department and he’s still relatively young so his delusions may become too dangerous to you and to himself for you to remain his only caregiver, you will need help and the time may very well come next week that being home is no longer the safest and best place for him. Please don’t be caught off guard on this, find the best case, safest situation for both of you and have it ready so you don’t have to do this in crisis mode and settle with what you get.
Last but far from least if the sharp decline has happened that quickly make a visit to his PCP just to make sure there is no UTI or other infection throwing his brain off balance, I can’t tell you just how sensitive my moms delicate brain balance is when it comes to infections (typically UTI) we often know before it shows up on a urine test simply based on her behavior change and have to go back a second time before the infection actually shows up on testing.
This is a horrible disease and it seems like often the easier it gets on them, the harder it gets for and on us the people that love and care for them. Enjoy your moments and know you are the loving partner he married whatever you need to do, no second guessing yourself.
One other suggestion I have not seen thus far in this discussion is to try to play music from the time period he seems to be his mind. Play music that he knows and likes. Research has also shown that music reconnects the brain somehow with the complexity of the connections it requires. Glen Campbell was able to still sing and play even though he did not recognize his family.
best to you and your husband, you have the healthy brain and you have your memories of him. Hold those, cherish those, and don’t blame yourself because you can’t make him remember. His brain is failing him, support him as best you can, and as others have said, make sure to take care of yourself and seek help whenever possible to give yourself a break, ask for help, either professional home care or a memory care community if it becomes too much or he is in danger by trying to escape and go “home”.
I'm sitting in a room with three musical instruments nearby--a clarinet and a trombone (both my own), and an alto sax our mother played in her high school band for which I'm wondering if I can make it playable again without spending a small fortune (plus my double bass in a storage unit, that won't fit inside my little car!). Our mother also played piano well into her adult years, but my sister and I eventually gave that away to a friend after our mother was in a nursing home.
I figure if I ever go blind in my remaining "good" eye, I'll still be able to play one or more of them, and hopedly for a while if I develop dementia.
Maybe others on this forum have some experience as to how music has had an effect on a dementia patient, either provided by others or produced by the patient himself/herself.
Judging by your age you and I are a year apart I was born in 59. I was diagnosed with Early Onset ALZ 5 yrs ago a month before my 57th birthday. I have learned a lot on this site over the years. Most recent Neuropsych Report, said I was in mid-late stage Dementia. The recent situation you have found yourself in is close to what I am going through. My DW is 8 yrs younger than me. We've made a follow up appointment with the Neuropsych Dr. for the first week of June, we want to ask him how he came to his diagnosis. My DW and I disagree with this diagnosis but accept I am in Midstages, I still cut the grass, bushes, vacuum in the house, wash dishes do laundry. The Nueropsych Dr says I need 24/7 supervision and care.
When I read your story about your DH forgetting who you were, is an issue in own mind and I'm terrified of reaching that point. My suggestion is, keep up what you've been doing, showing pictures of you together over the years, talk about places you've been to, and just assure him you understand he is in a new place, but you will be there for him when he needs you. Gently re-inform him of the same stories, keep showing the pictures etc. I believe what you've been doing is the best thing you can do.
Personally I've told my DW exactly how far away I want to be moved when I can no longer be cared for at home, and that I want her to place me 100 miles from where we live, so the family doesn't have to spend every non working moment visiting me. I want them to go on enjoying their lives. I know my DW has exceptional health and I want her to go about building a new life for herself, because she deserves, to enjoy life, we've worked hard over the 27yrs of our dating and married life. Think about what you might like for your future. My DW and I have been sharing our way through this journey from the beginning. I know she agrees with my requests, don't know if she'll really go forward with them, but I've wanted her to know my thoughts. Share all the thoughts you can with your DH. My hopes and prayers are for you and your DH. I wish you both the best.
minutes after he had a meal and many other behaviors like that. The only thing I can tell you is to make sure you have respite care in place because that is a lifesaver. And get counseling if you need it and in home medical help for your husband when going out becomes more difficult.
As far as advice, everything you stated that you have done is exactly what I have done. I really don't know what else to do either. It's extremely frustrating, as you well know. Some meds have helped a little, but not much. I also have to deal with her Parkinson's physical disabilities, so many days I feel like I am a 24/7 caregiver. It's been over 3 years since this has felt like a marriage. I know this may not help you much, but it is good to know that someone else is going through the same thing you are. I'd love to find a support group for people like us but, even if I did, I'd have a hard time getting away because of her numerous problems. I wish I could say it'll get better, but unfortunately it won't. My best advice is make sure you get some time for yourself because this situation wears on you. There are a lot of days that I feel that I just hate my life. Hopefully you don't get that same feeling.
Not only does this tend to induce guilt and anxiety, it also won't help because the cause won't be there. The loss of recognition is caused within his brain, not in anything to do with the OP. The OP is handling this superbly by offering calm reassurance and visual prompts.
Similarly, we have a client who is experiencing severe, acute depression, I suspect as part of vascular dementia although this is not yet diagnosed. Her daughter is working from home, has set up her office on a table ten feet away from her mother's chair, and is in agony trying to find more ways to reassure her mother that she has not abandoned her and never would. I explained to the daughter on Tuesday that, because the cause of the mother's distress is in her brain and not in any external reality, she could sit by her mother 24/7 and her mother would *still* believe that the daughter has left her and no longer loves her; this was borne out on Wednesday when the mother wailed "G_'s gone, I don't know where she is..!" while the said G_ was literally holding her hand.
The reality is that dementia is a cruel bully that hurts people in their tenderest parts. Staying calm and focused on getting the sufferer through it is certainly the way to go.
The other thing about the accusations of stealing money and it being his house, you just have to try to not get too upset about it. Arguing will make it worse, but it is really hard to not be trusted. Eventually, those kinds of thoughts he has will most likely go away. They did with my mom and she's trusted me completely for many years now. She's in memory care now, but seems to know me still.