Not sure
hello everyone. I’m new here. I thought I would try this site before giving up. I joined another site a few years ago when my husband, the love of my life first showed signs of cognitive decline. There was so much negativity on what will happen and people were very harsh. I just wanted support. I got very depressed and didn’t return for a couple of years. I tried again when I had no one to talk to and the same thing happened. My husband is mild to moderate. He’s a very young, active, intelligent 76 yo. Retired financial CEO. I’m a 64 yo same job ,still working. Second marriage for both and together 28 years next month. I don’t feel comfortable talking to anyone we know (even our grown kids) and neither does he. We’ve always been very private and kept all our personal lives between just the two of us. We’ve always talked to just each other but I don’t want to share some of my feelings about this with him. For the first time in my life. I feel it may upset him and I can’t do that. Ever.
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53Roses, Welcome. I have been a member of this site for almost 6 years and I can assure you that it is a very caring & supportive community. You can ask any question, raise any issue for discussion and the people here will share their experiences. I wish you strength and courage as you navigate this journey.
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Hello what a lovely insignia name 53roses. Welcome to this site it’s my lifeline my saviour, lots of kindness, consideration and often very positive and helpful advice. I hope you find it the same. I was a mess before I found this site, the lack of understanding from well meaning friends, relatives and the medical field is awful it makes me sad. You can winge, rant and rave as much as you like here and everybody understands. Good luck.
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I’m here about 3 yrs best thing to happen to me. My wife is stage 4,dementia but other then confused and repeats a lot this illness sucks but hang in there
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Welcome. Use this site in a way that works for you. I originally lurked in the background. Just reading other peoples post. Then when I had problems with my husband I didn’t know how to handle I started posting, asking for advice. Everyone was more than willing to give suggestions on how to handle different situations.
Right now I’m in a phase where I take breaks from the site knowing that it’s here if I need it. I recently I had problems with my husband, that were much too personal to discuss with anyone else. I came on here asking for advice , knowing it was a safe place. I got great advice that seems to be working.The people on this site are going through the same things you are. You are free to express any feelings you have, with no judgment. Remember every person with dementia is different. Your husband may not have many of the problems that other people have. My husband started showing symptoms 8 years ago, except for having no short term memory, 95% of the time he is a happy, easygoing person with very few other signs of dementia.
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Welcome 53roses. You will finding caring support here when you need it. Pls keep posting and reading. Some posts are heartbreaking but there's something very comforting knowing we're not alone going through this. All the people here are going through the same thing. Many are farther along on the journey and we can learn a lot from their experience and wisdom. There is also comfort, understanding, acceptance and hope. Yes, hope. Not for a different outcome for our LO but for ourselves. Hope and suggestions for how we can care for ourselves while we care for our lived ones. We all want the best for our spouses and it is hard going on this journey with them. There is also hope for life for us beyond this disease. We accept you here unconditionally. Feel free to post when you want info, need support or sometimes just need to share frustrations. We truly understand and welcome you here to just be you. It's an invaluable community.
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I am also a very privet person. There are things and feelings that I have not told anyone including our adult children but have posted here. I think seeing how the people here don't pass judgment and are supportive helps. They are friends with anonymity which help me to open up.
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I was diagnosed with MCI about a year ago at age 64. I elected to start on Leqembi, one of the new FDA-approved drugs which demonstrated slowing cognitive decline associated with AD in clinical trials (the other drug is Kisunla). I've also adjusted my diet, and I exercise more, as recommended by my Dr. to help slow the progression of AD. I'm hopeful that new treatments will become available to me in the next few years, such as anti-tau drugs used in combination with anti-amyloid drugs like Leqembi & Kisunla. This combination therapy may be able to actually stop the progression of cognitive decline.
What amazes me on this website is the seemingly small numbers of people taking anti-amyloid drugs posting to the website. Perhaps they are all busy with their lives, and don't wish to hang out in forums like this, where the dominant discussions seem to be "live with the disease, and learn to deal with it"1 -
we are a supportive group here. We don’t intend to be harsh- but we will be honest and caution against certain courses of action because we’ve ‘ been there, done that….and it didn’t turn out so well’. We don’t do that to be mean, we do it to save you from heartache or worse. So just try to take those type of comments with that mindset as opposed to thinking we are being critical.
Welcome to our group.
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Welcome to our group. I think and hope you'll like it here.
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I admire your approach to dealing with the disease. I hope I would act similarly in your situation. What I have seen is that there is a level of self awareness and focused initiative needed to attack the disease in this manner. Most people, by the time they get an official medical diagnosis, are lacking the awareness and determination to make the necessary lifestyle alterations to attack the disease head on. In many people, the disease seems to damage the parts of the brain that are most needed to pursue the type of lifestyle changes have the potential slow progression.
I have great appreciation for the people who have participated in clinical trials and those who are taking approved infusion drugs. They are the pioneers on the front lines of this battle. Without them, improvements in drug therapy would not be possible.
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welcome @53roses . This site has been a lifesaver for me. There are so many compassionate, knowledgeable people here who are willing to share their experiences. This is truly my 2nd family, and the only ones who really get it when it comes to this rotten disease. I hope you’ll stick around!
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There are several reasons why many ALZ patients cannot take Leqembi, or similar. We are fortunate enough to be near a teaching hospital, with great doctors focusing on ALZ research. DH was advised he was not a good candidate for Leqembi because it is ill suited for early onset dementia (more likely to have brain swelling). In addition, DH struggles greatly with getting MRIs. There were several times we had to walk away from appointments bc he could not stand the small spaces, even with relaxation meds. We have been using his existing meds of Donoprezil and Nemnda, with some improvement in his behavior. Much fewer hallucinations and confusion, but he still can’t remember anything, and he is still anxious about separation from me. :)
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I'm so glad this group is in existence! I am the only family caretaker for my Mom who has dementia and is 91. Seems there are some days when we BOTH fight depression. She knows I'm there to see to all of her needs, but have no time for just being with her. Still working full time and there are only so many hours in a day.
Does anyone else have a tough time with family or friends who have never walked in our shoes, but seem to know what we should do and how we should do it? There's not much else that sends me over the top like "helpful" comments from those who are blissfully free of the responsibility of a loved one with dementia. Ugh!
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There are ways to communicate suggestions in a way that respect and acknowledge the difficulty of our situation. Sometimes I get that and sometimes I get the other type of advice. What I found works best for me is to just thank the person for their concern, acknowledge they have a good idea and say "I need to work on that". The idea is to just get move past the subject without getting defensive or risking conflict. I have enough difficulty with my circumstances that I just need to avoid creating any more with my reaction to someone's advice.
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@53roses : I think if you are in the early stages of your LO's decline, it can feel like the people on this support group are harsh or overly negative. What I came to realize as my DW progressed thru the stages is that the folks here were being brutally honest about what was to come in an effort to prepare me for it. I am eternally grateful for the insight and support I have received here.
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I too agree with @midge333 , in the beginning it’s so life altering that i found my feelings were raw and skewed. Now that 5 years have passed, I find this site to be invaluable. Even tho I’m gun shy in posting about DH, the warriors here are going to give it to you straight up and they do have your best interest at heart. I do hope you check in even if you’re lurking like me. I also stop posting because I felt it was all about me and how I was feeling. And now I know it is about me and how with the right knowledge, I could help myself and in turn help my DH. We are still stuck firmly in the mild/moderate stage and I’m in the same age group as you. I’m still trying to find my way through with a lot of difficulty. But just knowing that this site exists helps with not feeling so alone. Hugs💕💜
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welcome. This is the place for info and support. I joined almost 2-1/2 years ago. I don’t know what I would have done without this forum. My husband passed away last August. I still come here for support and to try to help others. Although they mean well, family and friends don’t understand what a caregiver goes through. Everyone here understands completely. I agree that talking to your husband would only upset him. I never mentioned the diagnosis to my husband. People with dementia lose the ability to reason and many times no longer show sympathy or empathy. They also have anxiety. If you haven’t done so yet, I recommend the book “The 36 Hour Day” which helped me after my husband’s diagnosis. I only communicated with close family. I called his daughter and told her about the diagnosis and she said she wanted to be kept informed so I sent monthly updates via email listing his behaviors. I also bought the book for her. Neither of us mentioned our conversations to my husband. One other thing to consider is if the children live close by and if they would be able-willing to help as the disease progresses. You will need help and respite help for your own mental and physical well being. Come here often. You are not alone. 💜
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The anti-amyloid drugs became available only in the past year or so, and they are applicable for only a small number of selected patients. Most of the LOs of the members here have been symptomatic for several years, and many have delayed diagnosis. The members of this particular board have been especially supportive of each other.
Iris
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Thank you.
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Also, many here have spouses who have the double APOE4 genotype, which studies show have both an increased risk of brain bleeds and swelling, plus show a greatly reduced benefit. Some studies also show female benefits are much less than men. In talking with three different neurologists, none of them recommended monoclonal antibodies for my DW who fit the above descriptions. She is doing another trial which will publish phase three results this summer, but at best we are just trying to buy more time before progression beyond mild-to-moderate stages.
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@53roses
Hi and welcome back. I think midge nailed it. We all may be in the same storm, but we're not all in the same boat.
We don't mean to be harsh. Well, I do. It's part of my identity. Just kidding, that's a reference to my former role as the alcohol police.
A surprising number here have the experience of having been a dementia caregiver for a parent or in-law before taking on the care of a spouse and can appreciate that while each PWD has their own unique presentation and journey, there are some absolutes around things like driving, internet access and firearms that will result tales of dire consequences. Perhaps that's harsh, but it's the reality of this devastating disease.
Many of us come to certain posts with the experience of having ignored the advice of those who have been closer to the center of the storm to our peril.
My parents and my aunt and uncle described themselves as private. To me it felt secretive and added an unnecessary degree of difficulty in stepping up to help when needed. I can appreciate not wanting to share your inner thoughts with adult children, but please make sure they are looped in regarding your DH's condition and prognosis. They are likely your Plan B if something were to happen to you; it would be best for you and your DH if your DPOA (who should no longer be your DH making medical or financial decision on your behalf) understood DH's condition and your wishes for him going forward.
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I understand that perhaps most in this forum have a loved one that unfortunately was diagnosed late in the progression of AD. I get this situation: both of my parents had dementia, presumably AD. My sisters & I debated subjecting my Mom to an MRI to determine if she had AD. We elected not to have an MRI performed, as what was the point? At the time there were no FDA-approved drugs to slow the disease progression. I've read the "365 Day" and found it helpful in dealing with my Mom's AD.
What I continue to find peculiar is the misinformation often spread about Leqembi & Kisunla, the two FDA-approved drugs for AD. For example, it was stated in this group that these drugs are only applicable to a "small number of patients". The Phase 3 trials for these drugs (on which the FDA based their approval) had a diverse group of thousands of people as measured by age, gender, APOE status, clinical AD stage (MCI, mild AD, moderate AD), and Tau levels.
Another stated "some studies show females benefit less than men." In the Phase 3 study for Kisunla, the published results show a 31.9% average slowing in cognitive decline for females and a 24.0% average slowing for men. The corresponding data for Leqembi is a 43% slowing of cognitive decline for men and a 12% slowing for women.
I would agree that treatment with Leqembi or Kisunla for APOE4 homozygotes (those with both APOE4 genes) is a difficult decision. The rates of so-called ARIA (Amyloid-Related Imaging Anomalies - the acronym used in the literature regarding brain bleeding and/or swelling) are higher for this subgroup, and the benefits are reduced. On the other hand, there is no uncertainty in the outcome of untreated AD.It appears to me that we are on the edge of a large change in how early AD is diagnosed and treated here in the U.S. There are now multiple blood tests available for detecting amyloid in our bodies, and once some are approved by the FDA, they could revolutionize the diagnosis / treatment pathway for AD. Primary Care doctors could offer these blood tests as part of a regular annual exam for at-risk patients (i.e. those with a family history of AD). Perhaps Primary Care doctors could also offer simple in-office cognitive tests. In the future, this could perhaps be enough evidence to refer a patient to a program for treatment with Kisunla or Leqembi, with the necessary MRIs & infusion equipment. Or by that time, perhaps infusions will no longer be necessary, replaced by getting a shot with the active drug (both Eisai and Eli Lilly are working on this for their AD drugs).
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I can relate totally. When I was caring for my Mom (Alzheimer’s), I went on a forum and vented - nothing awful. One person just put me in my place in no uncertain terms. I was horrified and never posted again although I did read posts occasionally. I was very pleasantly surprised that everyone on this forum is so kind and willing to just listen without judging. You found a wonderful place to visit and share. I’m glad you found us!!!
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"There was so much negativity on what will happen and people were very harsh. I just wanted support. "
Yeah, it's tricky. Support is many things - a quick pick me up when you see a friend while out shopping and their smile and bit of good news about something takes your mind of stuff for a while . Or support when you add to your tool kit for the next phase of whatever you are dealing with.
It's hard for everyone but seems to be more for folks who are used to fixing things. Leading, being a leader, in an organized goal driven life. Dementia isn't that.
This Forum is an alcove in life filled with folks who have , sometimes for generations, lived with dementia in their LOs. Speaking for myself , with no dementia in my birth family, it took forever to see and identify what was going on. Cost years of emotions and hundreds of thousands in estate lawyer bills to get things sorted . I wish I'd known about this Forum back then. It seems so totally obvious now what was going on. But I had no knowledgeable support then.
So, the advise may not be rosy but take it that folks here want to save you from crashing on the rocks like they may have. We're like a Tourist guidebook to a town you don't want to visit. You may not want to hear that that place in town is bad, but try to find comfort that the town has folks who care about how you're doing and are ,truly, trying to lessen your burden. Take what you want from their lived experiences.
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my husband was not a candidate for leqembi since he’s on blood thinners and has a history of TIAs. He’s on donezipil. The last test his old doctor did was many years ago. He was tested at Mild Cognitive Impairment but his Dr diagnosed him with vascular and Alzheimer’s. He said it would be better that way to start him on medication right away. He stayed the same for about 6 years He only got worse after his TIAs 2 years ago. We got a new Dr a couple months ago. He was tested for the first time since having TIAs and was now mild to moderate. His old dr wanted to just keep an eye on his thyroid, pre-diabetes and TIAs. He’s now being treated for all those things as well as on vitamins and supplements he was low on. It definitely made a difference in his brain fog. His last clinical trial ended several months ago and he has not qualified for any new ones because of the blood thinners or pacemaker or the later stage (since he’s now mild to moderate and no longer mild). He’s exercises, eats right and stays active. I don’t know how long this stage will last but we’re doing everything we’re told to slow it down
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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
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