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.
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
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.
Eventually, I stepped into the world of Alz/Dementia and did the only thing I had the energy left to do so I ended up just almost like playing along. Eventually I got to a point when I would walk in and he would be nasty or say he didn't know me and I would say, 'oh - we met the other day but there was a lot going on' blah blah blah....And if he said anything nasty, I would say the same thing to him as I would anyone else in the world being nasty for no reason. But, there's not really any nastiness - more confusion I would say.
I actually ended up starting a new 'friendship' with my husband who didn't know me. Sometimes he did & sometimes he didn't, but I let him lead the way. Whatever his topic of conversation for the day - I played along. He would say, 'do you remember.......' and he would talk about some bizarre story and I would just listen and play along. This is an awful disease and sometimes we have to remember it's a terribly lonely disease for all involved.
I hope this helps you.
God Bless.
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.
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.
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!
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.
The first time they forget you, is devastating. But, it tends to come and go. Hallucinations, delusions, and paranoia are also a huge part of Dementia. You will learn to distract, deflect, and use therapeutic lying.
Just make sure that you join a support group, so that you can have a place to vent.
The Alzheimer's Dementia Caregiver's FB Support Group is a great place to get help and support.
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.
Be brave, take care of yourself. Keep a n emotional distance from this terrible disease, but love the person. (All difficult, I know)