Support group

SpiralStylz

I came looking for help, understanding, support. Husband newly diagnosed. Without offense, I must say it’s scarier being here than being lost and alone in my real life. No. I didn’t come here for the fantasy of “it will be ok” but it’s all so hopeless. I see major failings in my husband every week. Something new every day that he either ignores or brushes off. Seems most family want to tiptoe around it like it’s not the doom and gloom it honestly is. How does anyone being a carer/spouse of those afflicted get through it? There is absolutely nothing to hold onto. No offense.

Iris L.

Welcome SpiralStylz. Would it help you to understand about anosognosia? This means that when your DH (dear husband) ignores or brushes off his failings, it is because he truly doesn't see an issue. This is not denial, but a characteristic of dementia. There is no way to overcome anosognosia. Even if he will admit to having some memory difficulties, he will not comprehend the totality of the meaning of having dementia. You will have to learn new ways of communicating with him. The members will show you work-arounds that they use. Please keep posting and members will help you.

Iris

trottingalong

https://alzconnected.org/discussion/74393/support-group

I wore your shoes in the beginning, as probably many of us have. When I first came here searching for god knows what, it scared me. I just wasn’t ready to hear the truth. I was lost, scared, frustrated and depressed. Every emotion except for happy and accepting. It took me awhile before I came back and I’m thankful I did. The people here actually helped me in so many ways. Mostly how not to accelerate a problem. I have learned to take one day at a time, treasure the moments we still can laugh and try to find something positive every day. I still get angry and sad. This disease does that. But here, on this forum, you can vent or tell a story, ask questions or just read what others are going through and realize you aren’t alone. We get you.

Quilting brings calm

It might help to know that each person with dementia is different. Your loved one might never exhibit some of the symptoms that another person with dementia does. Being here helps you prepare in case these behaviors come up on your situation.
As to your family and friends, they could be in denial of the situation. Or they just don’t understand dementia. People don’t realize that it’s more than memory loss until they are exposed to it on a very frequent basis.

Cate2024

https://alzconnected.org/discussion/74393/support-group

I hear you! I was part of a monthly support group when my DH was first diagnosed. I stopped attending because I always felt worse afterwards. But give ALZ a chance. My DH was diagnosed almost 4 years ago….it is a rough road, no question, but ALZ will provide you with tools to help you navigate the journey. I started journaling 4 years ago and all the things thus far that I was sure I couldn't handle, I've somehow managed. Hang in there!

Bailey's Mom

I think we can all relate to how you feel. When I first came to this site after my HWD (husband with dementia) was newly diagnosed I was absolutely horrified and very depressed. I didn't return for at least six months. Now, after several years, I realize that he really does have an incurable disease and that he will have some of the symptoms that others have, but not all, as everyone is different. But…when he does display something new and unexpected, I can always find someone else who has already experienced it who has some good tips and kind words to help me cope. Good luck to you…come back when you are ready…

jgreen

Hi, Spiral,

I am so glad you found us and decided to take a chance. This is a huge step for you! That takes a lot of courage!

I am fairly new here myself. Took a chance like you, and have found validation, support, comfort, sadness, sometimes humor, and best of all caring and love. I lost all of that as DH (dear husband) has slowly progressed in his disease.

There are books, and other online professionals out there when you are ready. I ordered and am waiting for a book titled “The 36 Hour Day” that many have recommended on this discussion board. There are also geripsychologists who have videos and information for caregivers like us: “Care Blazers” and Dr. Tam Cummings are two that you can easily find online.

Stay connected with us. We are all on separate journeys, but are in this together.

God bless you.

Maru

https://alzconnected.org/discussion/74393/support-group

Dear Spirial, It sounds like you are feeling pretty much like I felt when my DH was first diagnosed. DH seemed so normal to everyone else. I felt helpless, I grieved, lost and alone. Gradually, those feelings gave way to just doing the best that I could. Everyone will tell you to get your legal work in place…POA, Medical POA , read The 36 Hour Day, read everything you can so that you can be prepared. You can get through this. Try to love him for who he has been, for the years that you have had together, for all the good things about him. He will change, you can be his anchor. To be a caretaker for someone with dementia is to be self-sacrificing. It is very important that you find a way to do some things that you enjoy doing…that is to say, take care of yourself, mentally and physically. Hang in there. This is great community where you can be honest and where you can find emotional support. See a therapist if you need to.

tboard

https://alzconnected.org/discussion/74393/support-group

I care for my third family member who has dementia. There isn't much in here that is new to me but I find value in knowing that my experiences are not unique and that others are living the same way that I am. I was forced to retire a few months ago. This isn't at all what my DH or I had planned. I am trying to do something that brings me joy each day and am not always successful. Right now I have a stack of books about the places I might have gone as a retiree and the things I might have done. Yes it is hopeless for my DH with Alzheimer's and vascular dementia. He is angry all of the time and often tells me that he wants to die. He will die.

RetiredTeacher

Spiralstylz I was in the same frame of mind in the beginning. Scared, lost, frightened, a bit of disbelief, beyond overwhelmed, hopeless and clueless. I wanted to fix him, believing he wouldn't progress. I was scared for our new normal, what our future would hold, worried how I would survive, how to pay for memory care. ..just all of it! It scared me so much, especially those who are farther along on this journey, I did not return to the site fir a while. I did return and just read posts until I felt comfortable to ask about things I didn't know, feared, etc. Those who are dealing with this understand your emotions. This place is the best to find info the drs don't tell you. You can vent, discuss anything, no judgment, just support, understanding and knowledge. It is a long journey for our loved ones and also ourselves. It took me years to get to acceptance, a better place to be. You will in time accept this is reality. We don't like it, wish it wasn't so, wish we could change the outcome or the timeline but we can't. All of us here are in the same boat, different rate or journey, slightly different course. We are here to support each other. We understand what you are going through! Reach out.

SDianeL

https://alzconnected.org/discussion/74393/support-group

we understand exactly how you feel. I was lost and terrified when I found this forum. The doctors were no help. I came here and just read old posts at first. I read the book “The 36 Hour Day” which helped me so much. I watched Tam Cummings and Teepa Snow caregiving videos. Then I started posting here and got so much help and support. Practical things and tips on how to care for my husband. Support when I needed it and the ability to vent with no judgement. I don’t know what I would have done without this group. Your husband is incapable of understanding he has an illness. It’s best not to try to discuss it. Learn all you can about dementia so you can help him. Family and friends may not understand or they may be in denial. Caring for someone with dementia is hard but here you know you’re not alone. Hugs. 💜

dayn2nite2

One thing about this forum is people will not lie to you here. This disease is just as ugly and horrible as you read about, and nobody here is going to tell you how it helps you love your spouse more or that it's a blessing. The sooner you understand that it really is hopeless, there is no treatment that's going to help, and live in its reality, the better off you'll be.

We have people come here who swear they will never leave, swear they married for "better or worse" and vow to take care of their spouse until their last breath. Now, that's the lie. Those people are fooling themselves and have a lack of understanding of just how exhausting and hopeless being a caregiver for someone with one of the dementias is.

trottingalong

https://alzconnected.org/discussion/comment/256554#Comment_256554

I think in the beginning we all think “we will be different.” We will keep them at home. I think it’s a coping method because most of us have never been through this before and it scares the heck out of us.

howhale

https://alzconnected.org/discussion/comment/256554#Comment_256554

I have to take exception to this post in regards to those of us who did care for our loved one from start to finish and at home in many cases. It is not a lie, it happens and often among those here. It is hard, very hard, and takes more out of you than you know you have within you to give but it is not a lie. Understand the disease, that it is terminal, nothing will change the outcome, medications only help manage the symptoms, every patient is different, but there are many of us who do know all of this and yet care for our loved one from start to the end. This forum can help you immensely if you choose to be the caregiver or if you choose to use a facility or something in between. Regardless of how care is provided for your loved one ( and every possible way is used by someone and each is good for them), the impact to you will be devastating. My only offering is to learn about the disease, use this forum as often as you can, members here feel and understand you and try to see the care you provide in as good a light as possible because when it is over, I can tell you from my experience, you will remember every little thing you wish you had done better as a regret and guilt. What comes after can be far more devastating and long lasting than what you endured providing the care.

dayn2nite2

It's a public forum and everyone has a different opinion and experience. If you choose to keep your spouse at home, do that, but I always catch the subtle shaming of those who cannot or do not keep them at home. Not everyone wants a one-bed nursing home in their own house. Again, if that's what you wanted, go on and do that. But don't make others feel like crap because you chose differently.

Timmyd

I tell myself the things I need to hear to make it through the day. Sometimes the things I tell myself at 10am are in contradiction with the things I tell myself at 4pm.

Karen711

https://alzconnected.org/discussion/comment/256601#Comment_256601

So True Timmyd!