People just don’t understand
I have found that people just don’t really understand how hard this is if they haven’t experienced it. And that you feel so alone although you’re never really by yourself. The first couple of years after diagnosis wasn’t too bad, but the last 5 have been pretty overwhelming at times. My DW hasn’t remembered that we’re married for quite some time now. She will say are you going to marry me pretty often. People say oh that’s so sweet, it should make you feel good she’d pick you again. I say it does, but they don’t see the 34 yrs of our lives together have vanished from her mind like I do. She taught school for 29 years as a teacher of the visually impaired. She doesn’t remember that. She doesn’t remember our time when I served in the marine corps. I thought for a while after the diagnosis, that she was progressing rather slowly. When you put it in perspective over the last 7 years, it’s progressed really quickly. I know people may just try to lift your spirits by saying things like that, but it’s hard for me to look past the loss. I hate that my mind goes there, but it does. Is that normal? I don’t talk about it often because my DW and I are fairly private people. She didn’t want everyone knowing her business after the diagnosis so I’ve tried to honor that wish for as long as I could. I also don’t want to burden my kids with my feelings. It’s hard enough on them already, losing their mom in such a way. I hope that in the end I will remember the good memories and the person she used to be, not this damn disease.
Comments
-
Hello Sgt D, it is a damn disease in every way. I’m finding one of the more difficult thing to handle with my DH is having his presence without presence. He’s here, but not here. It’s all so sad. My DH doesn’t know I’m his wife, he quite often calls me mom. I bet most all caregivers experience pain and losses that others not living with a LO with this disease understands. For me it shows up like a gnawing in my gut, maybe even like apprehension. Things aren’t right and it’s painful to live in this alternative universe. Always longing for the past, the way things used to be.
10 -
tonyac2, I feel that. My DW calls me dad. I think because she hears the kids call me that. I know I lost her a long time ago, but seeing her and not being able to have a conversation with her is soul crushing. I mean it looks like her but it’s not. My talks with her now are: eat your food, take a drink, let’s go to the bathroom, things like that.
6 -
Hi there, I totally understand. My DW has declined with in the last six months. Every morning wake up is a battle with her being angry as well as going to the bathroom, getting dressed and feeding. She gets so angry and cussing. Then there is a little bit of love that comes through and it breaks my heart.
7 -
Hello, I wish none of us had to experience this. I’ve had to deal with some anger issues. If we go out to eat, I never know what will trigger her. It seems like when there is a lot going on around her and she can’t process it. I look for cues to let me know it’s time for us to go.
5 -
So sorry about your wife. Yes, we know exactly how you feel. It’s heartbreaking. Nobody could ever understand that hasn’t gone through it. We lose so much to the disease. The past, present and future. And we also have anticipatory grief. Then there’s the guilt of did we do enough and we feel guilty for praying their suffering would end. Yes I’m angry at the disease!! Come here anytime you need to vent. I lost my Marine to Alzheimer’s in August 2024. Semper Fi. 💜
4 -
Thank you. I’m so sorry for your loss.
2 -
it's tragic, for sure, and while we deal with the ambiguous loss of our soul mate, family members don't really understand what our daily life is like. My DW thinks we live in her grandma's house, which is 500 miles from our home. She doesn't know that her original family members have all passed away, and she would like for us to live in isolation every day and never have to talk with anyone else. We can't ever use the "A" word or she goes ballistic. Meaningful discussion is a thing of the past, but I do encourage her to talk about her childhood years and she remembers some of those early years and experiences.
God bless you for what you are doing. It's really frustrating and disheartening.
4 -
One of the thoughts that causes me so much guilt and reflects how hard this is, is that I would not have chosen to be with the person my DH is now. I chose a different man. The one I live with now causes me so much sadness and anxiety that I am losing myself. This is not his fault. He did not choose this either. We are both victims. No one, unless they go through this, can understand that. I am here. I will be here till the end of one of us. But this is the hardest thing I have ever done.
12 -
Welcome, Sgt D. So sorry you had to join us.
What you’re feeling is definitely normal. The loss is so big and we see it and feel it all day, every day. It’s amazing how we manage to get up on take good care of our loved ones in the midst of it all.
Hang in there. This group of wonderful folks helps me so dang much.
4 -
We have been married for 50 years the first 30 was what I thought as close to perfect as humanly possible. The next 10 had some real issues and the last 10 have been Alzheimer's. I don't think that I will ever be able to think of or about her without the bad times being my most prevalent thought. The more recent times come to mind first. I hope that changes someday.
11 -
I shouldn't but I still ask why are we the chosen ones? …
4 -
Family definitely doesn’t understand the day to day. My DW hasn’t ever really talked about her past. She doesn’t talk much at all. I have to start the conversation and her response is almost always yeah or I love you.
3 -
I know the disease has changed my DW so much. It’s like I don’t really know her. Even what she will and won’t eat.
4 -
Thank you. I have learned a lot from just reading posts for a long time before I joined.
4 -
I’ve had as good a marriage as I could hope to. She was a wonderful woman before the disease took her. We can only hope we can at least have the good memories when this journey is over.
3 -
I think that too. It’s so unfair to everyone involved. The person suffering from this dreadful disease and the ones taking care of them. I truly believe my DW no longer knows what is happening to her, but I sure do.
5 -
My DW of 40 years has total aphasia. So if she’s thinking something, anything - she can’t say it. It reminds me at times of someone who’s thought to be in a coma but isn’t and is listening to everything that’s being said but can’t respond. From time to time something will come through. A word or a look. And I hang on it for as long as possible. It’s been 6 years since she was diagnosed. She’s deep into stage 6. It is so hard to remember what it was like before this. One daughter finds videos from time to time of her and we’re all just blown away. It’s like someone said previously - they know who you are but they don’t know who you are. It must be like a (bad) dream for them.
3 -
People cannot understand this situation unless they have lived it. I have found that the local Alzheiemer's support group is helpful. Everyone's journey is a little different, but the same in many ways.
3
Commonly Used Abbreviations
DH = Dear Husband
DW= Dear Wife, Darling Wife
LO = Loved One
ES = Early Stage
EO = Early Onset
FTD = Frontotemporal Dementia
VD = Vascular Dementia
MC = Memory Care
AL = Assisted Living
POA = Power of Attorney
Read more
Categories
- All Categories
- 638 Living With Alzheimer's or Dementia
- 353 I Am Living With Alzheimer's or Other Dementia
- 285 I Am Living With Younger Onset Alzheimer's
- 17.8K Supporting Someone Living with Dementia
- 5.7K I Am a Caregiver (General Topics)
- 8.7K Caring For a Spouse or Partner
- 3K Caring for a Parent
- 229 Caring Long Distance
- 181 Supporting Those Who Have Lost Someone
- 13 Discusiones en Español
- 1 Vivir con Alzheimer u Otra Demencia
- 1 Vivo con Alzheimer u Otra Demencia
- Vivo con Alzheimer de Inicio Más Joven
- 12 Prestación de Cuidado
- 3 Soy Cuidador (Temas Generales)
- 8 Cuidar de un Padre
- 23 ALZConnected Resources
- View Discussions For People Living with Dementia
- View Discussions for Caregivers
- Discusiones en Español
- Browse All Discussions
- Dementia Resources
- 8 Account Assistance
- 15 Help