Scared and unsure
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take it slow you’ve come to right place , I guess my advice would be to see a Nurologist then go from there. It could be meds he’s on
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I understand your feelings whole heartedly. My husband was diagnosed 4 years ago at the age of 54. We saw the signs you are seeing and immediately made an appointment with a Neurologist. He was given a neurocognitive test which takes a while and he immediately failed. He worked in the ER taking care of patients and immediately had to stop working. Just keep track and write down what you and family/friends are seeing and communicate that to the physician. This way they know where to start.3
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Welcome to the forum, both of you—you have come to a good place for advice and support. If you look to the right under Quick Links and Groups, there is one for new members that has a lot of good information collected in one place. Many recommend reading The 36 Hour Day, too—a good general book about caring for someone with dementia.
If the diagnosis is confirmed, early action on legal and financial affairs is always recommended. Get durable powers of attorney for heatlhcare and finances in place.
If you read a lot of threads here, you will learn a lot and feel less alone. There are a lot of wise and experienced people here ready to help. It's a heartbreaking disease.
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Oh thank you so much for reaching out so quickly! It means so much to not be so alone1
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It can be so scary and overwhelming in the beginning and honestly through the whole journey. Just take it one step at a time and try not to ruin today worrying about tomorrow. Some day ,you’ll look back on this time now and realize these were the good ole days so love, laugh and make all the amazing special memories you can. This platform and all the information you’ll study to learn about the disease will help you navigate your path even though each path is different. I’ve struggled through each step along the way but I’m still stepping. My husband is stage 6a and I’m in the process of moving him into a memory care center but we’ve had many good years since he was first diagnosed.
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Iam trying to figure out the website and I can’t find this quick links to the right?? Iam not good with this kind of forum I never did a chat forum before
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He may have dementia but that doesn't mean you won't have some of the most emotionally intimate moments you've ever had. Take everything one day at a time, accept who he is at that moment and realize this disease is not who he is. Get all of your documents, finances in order, POAs, wills, etc as you will be the main decision maker in the household from now on. It's tough but it's only tough today, tomorrow will hold enough trouble of it's own so try not to think too far ahead as far as careviving goes but please think ahead on how this will affect you, your finances, etc. Once that is in place you can breathe a bit easier.
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If you are on laptop/desktop computer, there is a gold/yellow button at the top that says New Discussion. Look right below that and you will see Quick Links. Below that click on the Groups link. Scroll down the groups and you will find New Member (or something like that) thread. Hope this helps.
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There as so many wonderful comments here from our new friends and confidantes that understand exactly what we’re going through. I also worry too much about what may or may not happen, so as others have said, take it one step at a time, focus on today, while getting affairs in order. Once I had that done, I felt some relief and was better able to handle the day to day.
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Let me just echo what ghohotog said, there may still be sweet moments that sustain your soul, even late in the disease course. It’s still crushingly hard, but in stage 6 my partner still knows me most of the time, and with Ativan on board (courtesy of hospice) she is calmer and loving, glad to see me. These things help. So don’t be afraid, all we can do is get through this together.
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The special moments can still happen even in mid-stage 7. When I am leaving, I always kiss DH on the forehead and tell him I love him always and forever. In a rare moment of lucidity recently, he kissed me on the cheek and clearly said, "I love you." I will treasure that forever.
You have come to a good place for support and advice. This wonderful community has gotten me through unbearable anxiety and overwhelming grief. We are here for you.
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welcome to the place for information and support. So sorry you are going through this. Try to take one thing at a time. It’s overwhelming. My husband was diagnosed in 2021. He had symptoms for about 4 years prior but I thought it was normal age related stuff. He compensated well. Please keep us posted.
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Sending you hugs. You are not alone. This disease robs both the patient and the caregiver. Get counseling - we all need someone to talk to and perhaps ask your PCP for an antidepressant. I would suspect that most of us are on some sort of meds for this disease. Take care and keep venting and asking for advice as these folks are the best. I have learned so much from them.
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welcome. Breathe, just breathe.
You will find good advice here- both given directly to you and by reading a bunch of the other discussions here. Be sure to look at the general caregiver forum and the caring for a parent forum( they are under the supporting someone heading just like this caring for spouse forum). The topics there will be good for you too.
This is a marathon not a sprint. This starts out with lots of good days and some bad days and usually slowly progresses( depending on age and type of dementia). So you aren’t likely to see the really bad stuff for quite a while yet- if ever. Every person with dementia is on their own journey and one doesn’t always have the same symptoms and problems as another’s.
Take time for yourself when you can. Self care is important to your own health.
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”New Caregiver Help” is the group you’re looking for, I think.
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I can’t express how I read and reread every response you have given. Iam not able at this time to talk to anyone about this because we are just now coming to grips with something not being “right”. We made an appointment with his pcp yesterday and he really got depressed.
good advice to live our best days but it is so hard with all the fear. I just started an med for anxiety because it is crippling.On top of everything we have two moms that are elderly (88/94) and they rely on us. We have no family and few friends that Iam sure will run for hills. So this space is a godsend for support and information.
Can anyone tell me what to expect when we go to the pcp?
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Staval, you should write down all of your concerns and give them to the pcp ahead of time. Be specific and be detailed. I was in private practice for a long time. If someone came in to me worried about their memory, they were usually okay—being aware of it and not trying to minimize it usually meant there wasn't underlying dementia and we would look for other issues like stress, sleep disturbances, excess alcohol consumption. But when the family complained and let me know ahead of time: those folks I knew were really in trouble. So you're doing two things: you're letting the doc know the real reason for the visit, and you avoid having to discuss painful and potentially embarrassing details in front of your DH. Discussions like this inevitably make the affected person defensive, and most will try to minimize their symptoms. A good practitioner will be aware of these issues and will know how to put the person at ease.
Almost certainly what will happen is that the doc will do a "mini mental status exam" (MMSE) which includes about ten questions—things like orientation to time and place, obvious concrete facts (who is the president), repeating and remembering three words both immediately and after three minutes, subtracting serial sevens, following instructions (take a piece of paper, fold it in half, place it on the table); interpreting a common phrase (like a penny saved is a penny earned) and drawing a clock face set to a certain time. Then they will order blood work to rule out some treatable conditions (thyroid levels, vitamin B12) and refer him to a neurologist. They may or may not order brain imaging, and they may order the new promising blood test for Alzheimer's—Ptau217—though this is not routinely covered by insurance at this point. they may also order some genetic screening—specifically APOe4—-because this affects not only risk but ability to tolerate some of the newer IV medications like Leqembi. If the pcp doesn't do that blood work, the neurologist almost certainly will.
So you likely won't come away with an immediate answer. Some folks are fine with being seen by a neurologist; others balk and refuse to go back. Depends on the underlying personality. Some PCP's are comfortable starting medications like Aricept or Namenda—though they are of questionable help and have a lot of side effects—and some are not. Whether he is a candidate for the newer IV medications (and whether it's worth it both in terms of cost and difficulty) is a discussion to have with the neurologist.
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I know the extra pressure you have having no family, other than your elderly moms, and few freinds. I'm in the same situation and trying to figure out who can be my financial/healthcare POA's, wills, etc…what will happen if I pass first…on and on. My husband was newly diagnosed and doesn't think he has a problem…he is angry and belligerent and I'm pretty much at the end of my rope. This site is so helpful, since unless you are living through it there is no way to understand. Good luck to you.
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Now is a more hopeful time than ever. New medicines have been approved, and early diagnosis is the time to intervene. Definitely book a neurologist (it can take some time to get in, it seems). Look into clinical trials in your area. There are experimental medicines with lots of promise. We got my DW (early onset, too) into a Janssen Pharmaceuticals clinical trial and it really does seem to be slowing progression. Stay strong!
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thank you! Thank you! God has led me to this site and it’s a relief to have so many kind people
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Please read all you can about the diagnosis process so that you can be certain nothing treatable was over looked.
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How do you get durable POA for medical and legal in place. My husband was recently diagnosed and is very unstable at times. Other times he seems normal but doctors have recommeneded he not drive anymore. He also keeps threatening to get a divorce and that would not solve anything
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I recommend an eldercare attorney for this. It's valuable advice and help.
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I agree with going to an atty. It is expensive and I didn't want to do it, but a DPOA is very complicated and if it's not structured properly financial institutions apparently won't honor it…can't blame them. I'm in the process of having new ones drawn up…currently I am the agent on HWD's but need a backup plan in case I become incapacitated or die, plus he can't be the agent on mine anymore…going to use the atty as my agent because I have no children or family who are qualified to do it. It is a real PITA, but has to be done. The big problem will be getting HWD to sign it (next week). Good luck…I would suggest not waiting too long as they can progress quickly and need to be cognitive enough to sign the DPOA.
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Thank you. How do I find one that I can trust and afford?
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nelf.org
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The word "afford" doesn't mean what it meant before dementia entered our lives. This disease is so freakishly expensive between supplies and help, that spending a few hundred is such a limited investment that may save tens of thousands down the road.
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Thanks so much for replying and sharing your insights. My husband is so defensive and angry and SUSPICIOUS to the point of my stress level being absolutely thru the roof. I can guarantee he will not sign any new documents. I need to get our financial affairs in order because I am sadly also dealing with family members who have arterial motives. Example being they WANT him to divorce me. I know for a fact it is because they know they can convince him to give him money without me in the picture. His daughter and my DIL are in cahoots and it is awful. Thankfully one daughter is in my corner but basically is trying to stay neutral which is hard. She loves us both. I wish she would be more assertive with her brother and voice how unacceptable it is the way I am being portrayed but understandably doesn't want to get in the middle of all the chaos we have right now. She is willing to let him come stay with her but only if her Dad is on board and unfortunately he is not. I need to look into an elder law attorney for sure. My DIL convinced my husband to get a lawyer (waste of 150 just for the consultation!) I was so furious. Still am. We argue every day, he is very combative about every little thing. It is a nightmare. Thanks for letting me vent everyone.
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Wow…you are really in a hard situation! Being a caregiver is difficult enough without fighting his family for control and, it sounds like, access to his money. I would definitely see a lawyer, even though it is not a pleasant thing to do, to at least protect yourself so that you don't end up penniless. Maybe a divorce in this situation wouldn't be such a bad thing for you…I would just make sure that I had a good attorney in my corner. My HWD did sign a new DPOA and he liked the atty (which is a miracle since he distrusts everyone these days and thinks they are all out to get him). He was very compliant, but I had to convince him that it was all in his best interest and to his benefit. Good luck…take care of yourself.
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As you start down this difficult road, there is a book called "The 36 hour Day" that has been helpful to so many in this journey. It was my go to source and I still recommend it
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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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