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My DH has been diagnosed with early onset of dimentia and in the process of more tests and more appointments. Looking back he has been having symptoms for about 5 years now but overnight I feel my life has changed. Does the anxiety every go away? I have a preteen and a teen and I am worried about how I will handle all that is to come. Am I strong enough? Will my life ever feel normal? Where to start? How will I get him the care he will need in the future when we are living pay check to paycheck? He is in the process of retiring as he is not able to do his job anymore.
Any suggestions would be appreciated.
Comments
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Welcome to the forum. Sorry you need it, but you found one you will never have to leave because there was not enough help or understanding.
The anxiety -- some anxiety will probably be with you until you are no longer a caregiver. But that doesn't mean you can't find things that you can actually enjoy together. The anxiety probably feels like it will never end, but you have a lot of good days in front of you.
You're worried about how you will handle everything that is to come. We've all been there. You will handle it with the help and suggestions of members here. We understand, and we care.
You will look back on this time, and realize that you have become Wonder woman. You are much stronger than you think.
Will your life ever feel normal, and where do you start? You start by reading all the posts you can, even if they're old threads. You do everything you can enjoy together, and you start today. You have a lot of good days to look forward to.
How do you get him the help he will need? Whenever you see something that is causing financial stress, you come to the forum to ask for suggestions. There are many programs to help. And you need to see a CELA (certified elder law attorney) soon. This will make you feel like a weight has been lifted off your shoulders. They can really be a lot of help, and if you wait too long, you will be sorry.
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Ed1937 said it perfectly.
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Also new here dealing with year 6 of my wife's EO diagnosis starting at age 50. No deep wisdom to share except to say we also have two kids who were late teens when she was diagnosed and they have been a great help (while I know also harboring some anxiety of their own). Now both are out of the house and live across the country, but a well-timed phone call or text can lift her spirits. BOREDOM is our biggest challenge, as she is physically capable, but cannot work and struggles with basic tasks like reading, following directions, emails etc... We just found out she is farther along than allowed for LeQuembi, which was a bit of a kick in the ass, as that had been something we'd been discussing for over a year. Anyway, no more rambles...just a note to let you know you're not alone.
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Welcome! A CELA is named for elders, but even though you're still young that's the lawyer you need. They understand how to protect your kids from the economic ravages of this disease. Make sure to prioritize protecting your kids, because sometimes a perfectly nice person with dementia can become very aggressive and target someone in the household. You can't cure, or even really treat, Alzheimer's but you can protect your kids.
You will probably get him the care he needs by getting him on Medicaid, and a CELA will be very helpful with that.
Please ask a lot of questions. There are several younger participants on here, and while we have a lot in common with the retirees, there are also some differences.
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Does it have to be an Elder Law attorney or can it be an estate attorney? The reason I ask is I have not found an elder law attorney within 45 minutes of my house. Maybe the attorney does not have to be close, just curious. Thank you.
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What is LeQuembi? We have not told our kids yet. They know changes are occuring but since this is relatively new we wanted more information from the doctors first. The nerologist who is seeing my husband now told us to hold of on telling them too much until we know more. I just worry what this will do to their mental health.
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Thank you.
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In 2018 when we had our original Revocable Trust, Wills and POAs drawn up, we used a regular estate planning attorney. But since so many wise folks on this board recommended seeing a CELA, I went to one to have our existing documents reviewed. Trust and Wills were fine but the CELA felt our POA Finance documents were not adequately detailed, so we spent time and money to have those updated. In hind sight, it would have been more efficient and less costly had we worked with a CELA from the get go.
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I just got the same answer regarding my DW starting Lequembi. I was told that her MOCA score (15) was too low to qualify. She still does the majority of her ADL’s without help and most of the time I’m thinking she’s great. Is this “cut off” a Medicare thing? I was disappointed but wasn’t sure if I could have convinced her to submit to the infusions anyway due to hers not recognizing that there is anything wrong that needs treatment. She is now taking Aricept and I tell her it’s for brain health. God willing, there will be another medication in the near future that will slow this and be easier to administer. .
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Question on CELA versus estate attorney
CELA is able to help navigate the process for possible future Medicaid needs and protection of assets. An estate attorney deals only with estate issue for all ages young to older.
We had all of documents done in NV with a CELA in 2011 in person. We moved to FL in 2023 and needed to have the documents redone to conform to FL law. This was in the middle of Covid, and my NV attorney recommended a lawyer a 4-hour drive away. We met via Zoom and then emailed and snail mailed to share the trust/POAs in place and get new documents drawn up. Due t the drive I elected to pay a local notary to do signing. That went well, but if the drive had been shorter, I would have preferred to go to the office to sign.
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Thank you
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Today has been a really tough one. On Friday my DH adopted a one year old dog. Not only is the dog still puppish but deaf. The dog was lovely and cuddly but had huge seperation anxiety. After having the dog for the weekend and then the last three days my DH came to realize the dog was too much. We had to return the dog to the shelter. Now, he is angry with everyone in the house and depressed because he loved the dog. He is right, in the fact that I was not supportive or helpful with the dog. I am mentally exhausted with everything going on and was not extra helpful. He is mad at my kids for not taking more of a role with the dog or any of our animals but they did ask to get the dog. When it comes to the other animals they are like any other kids and love the idea but then are not great with follow through. Which then led to the argument that he sacrifices everything for everyone and nobody does anything in return for him. My kids are 11 and 14 not the age where they understand developmentally what he needs. Also, he started blamming me tonight for having no friends and no life. He is mad that I have not been super supportive about him trying to start a lawn care business. I hate that he is feeling like this but like I said I am mentally exhausted. Please tell me how I work, balance appointments/conversations with lawyers and doctors, prepare for the future and then come home and try to be supportive and sympathetic and rational without upsetting him. I know I should be greatful that things are not much worse. I feel horrible.
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What is Lequembi?
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Leqembi is one of the new IV treatments for Alzheimer's. Difficult to administer, high risk side effects, efficacy still questionable.
I'm sorry about the dog, sounds like it was difficult on multiple levels. But maybe an early cautionary tale that you really, really cannot trust his judgement. The idea of him trying to start a business gives me great pause.
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Me as well. He just doesnt listen. I feel so bad about the dog, that I almost called back to see if we could change our minds. He is so sad and angry about it.
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You are in a situation where you are able to see what the future holds. Your husband is afraid. The anger is probably not really at you or the kids, but at the recognition that he has been diagnosed with a horrible disease that will completely change his life. You guys are simply the targets of his fear. I would suggest you acknowledge his anger and tell him you feel the same. That your lives have been upended and you’re both afraid. You’re afraid for him, for yourself, and for the children. Give words to his emotions that he is not capable expressing. Then consider scheduling an appointment for the two of you with a marriage counselor to help you both process this.
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Re: "he just doesn't listen". If he has been diagnosed with dementia, he has anosognosia. He does listen, but he doesn't understand the meaning of what you tell him. This is because he is unaware of having dementia and unaware of the new changes that are necessary. He is unable to understand consequences. Hence, adopting a puppy with no understanding of how much work this will be.
Rev process of retiring. Consider short term disability leave (sick leave) pending his application for long term SSDI and whatever private long term disability pension his employment might offer. Duscuss this with the elder attorney. You need to do this quickly because he could lose benefits.
There is a thread on the General Caregivers board about a PWD seeking employment. Basically, it's not going to happen.
Re: marriage counseling, this is for people who both have insight and awareness. Your DH has anosognosia and marriage counseling will be futile because you won't get anywhere. Learn the new ways of communication from the other members.
Iris
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Thank you for the advice. Unfortunately my husband has never been one to seek counseling. It drives me crazy because there are so many positive benifits.
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Thank you. Tonight he is reconsidering going and getting the dog. I am struggling with all of this. He has been on short term disabililty and that came to an end. His doctor would not clear him to go back to work. He qualified for his disability pension. I did have him apply for SSDI but the website is telling me it could take up to 11 months. What benefits could he lose? He is trying to start his own lawn mowing business. This worries me but as you mentioned before he does not understand why and continues to take the steps to do this (pass out fliers/buy a new mower). Thanks for listening.
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Some good wisdom above. I only want to say that I feel and understand the stress you're under. Sounds like he's e's right in that stage where sometimes you just don't how cognizant he really is or isn't at any given moment and that is exhausting trying to figure out which.
Myself, I was always happy just to hear some sibalance of clarity and that maybe we can overcome this but we couldn't. We still had many many beautiful moments and still do but those beautiful moments are are even more special and heartbreaking because we are losing them. It's not their fault, it's not our fault but nonetheless. . .
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I understand. So many people are insecure about revealing themselves. But don’t let his resistance keep you from going. You can use the support!
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The doctor is not supposed to clear him to go back to work. The doctor is supposed to extend his short term sick leave until he has completed the application for long term disability benefits. So, is he receiving a longbterm disability pension from his employment?
The next step is applying for SSDI. With a diagnosis of Alzheimer's Disease, his application can be fast tracked under "Compassionate Allowance". Discuss Compassionate Allowance with the professionals you are working with. If they are unaware of Compassionate Allowance, then call the Helpline at 1-800-272-3900 and ask to speak with a Care Consultant who will advise you.
Counseling was suggested. I would advise you to seek counseling with a Care Consultant at your local Alzheimer's Association chapter to give you personal guidance. Also, you should seek out an in-person caregiver support group. Keep posting here, members will help you because they have been through what you are dealing with. Read all of the online reading material.
Iris
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Spunkykid, do you hold power of attorney yet? You need to do this (durable power of attorney finances and healthcare) while he can still sign. a certified elder law attorney can help you do this (look at nelf.org). You are going to need to do this sooner rather than later, and you probably need to tell the attorney about the business attempts. Unfortunately you may have to step in sooner than you want to put a stop to this, if he is handing out fliers: is he insured for such a business venture? What would happen if he causes damage to someone's property or is injured? Or injures someone?Y ou need to talk to your insurance agent too and tell them the situation because it is in fact impossible for him to do this.
It is very difficult to realize that you are now in charge and responsible, and you cannot defer to him even if that has been the dynamic between you in the past. i am so sorry. Your children are quite young, and this is going to be difficult for them too. I think speaking to someone at your local Alzheimer's Association chapter is an excellent idea.
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My husband has been diagnosed with Alzheimer's for about 4 years but I'm thinking the symptoms started a couple of years before. We've only been married 10 years and when we got married we had wills, POA, living wills done for both of us. When he was diagnosed, I had my POA changed to my daughters(my husband was the POA.) It's a durable POA. I'm his POA. He is in later stage 5. He is still mobile, doesn't drive and doesn't know who I am most of the time. At this stage, should anything be changed or can it?
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Thank you. Unfortunately where I live there are no in person support groups. I am struggling to find an online one that meets in the evening. I will call the number you suggested. The advice is greatly appreciated.
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I have reached out to my insurance agent. Unfortunately we do not have a local alz chapter near me. I have a meeting tomorrow to finish up our will and power of attorney.
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> @spunkykid578 said:
> What is LeQuembi? We have not told our kids yet. They know changes are occuring but since this is relatively new we wanted more information from the doctors first. The nerologist who is seeing my husband now told us to hold of on telling them too much until we know more. I just worry what this will do to their mental health.
> @spunkykid578 said:
> My DH has been diagnosed with early onset of dimentia and in the process of more tests and more appointments. Looking back he has been having symptoms for about 5 years now but overnight I feel my life has changed. Does the anxiety every go away? I have a preteen and a teen and I am worried about how I will handle all that is to come. Am I strong enough? Will my life ever feel normal? Where to start? How will I get him the care he will need in the future when we are living pay check to paycheck? He is in the process of retiring as he is not able to do his job anymore.
> Any suggestions would be appreciated.
I just was searching for advice for helping my kids cope and your post popped up first. I hope you don't mind but looks like we are in the same boat--sadly. My husband was officially diagnosed in February (but we were testing last September and had an MRI that showed vascular damage). We need him to work, but that looks pretty different these days. We have 7 kids still at home and they do know...they have been seeing their father repeat himself, make mistakes, getting frustrated. We haven't started the legal stuff but did file for SSI. We're considering putting our three teen girls and older son in counseling together. I know they are suppressing their feelings to help us get through this. I just wonder if there are counselors that help families like ours work through the grief.
Sonya0
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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