DH currently in process of diagnosis, feeling overwhelmed, how to help him with diagnosis

MrFidosMom

My DH had his follow up visit with a neuro np today. She is saying based on memory tests he is borderline memory disorder. He does not have the alzheimer indicators on MRI, ordering a pet scan to look for amyloid particles and due to his age (57) he could be a good candidate for lecanumab med. The med has side effect considerations. He has also been diagnosed with mild sleep apnea, but I feel like that is getting lost in the discussions unless I ask about it. Some of the stuff I read implies the sleep apnea can look like dementia. To add to the confusion he was potentially mis diagnosed as adhd 7 or 8 years ago, so it has been hard to idenitify what is happening as the meds for adhd appeared to help until 2019.

Just trying to get through what looks like another month without a definative diagnosis. This has been a very rough day as the np is saying the momory spec is saying he can no longer drive and needs someone with him 24/7. He does have memory issues, and some confusion but they are not a everyday occurrence. He has trouble with some instructions.

How do you support your loved one whèn they are understanding what the memory issue diagnosis means, but we don't know what the definative diagnosis is.

M1

welcome to the forum, there are lots of experienced caregivers here who can help you through this. I'm sorry you have reason to be here, but it's a good place.

If she has told him not to drive it sounds like he is more than borderline. It's my experience that many practitioners underplay the degree of impairment at initial diagnosis, almost like they are trying to ease you into it somehow. The value of having definitive diagnosis at this young age will be to qualify him for SSDI, as well as any potential regarding the new medications--he may indeed be a reasonable candidate for those.

I've never seen sleep apnea cause cognitive symptoms severe enough to be confused with true dementia. You are right that it shouldn't be ignored--though if/when he progresses, using a CPAP or BiPAP machine may become more difficult for him (it's difficult enough for people without dementia).

I would also say that having a definitive diagnosis may matter more to you than to him--although the availability of the new drugs may change that. Many folks with dementia--including my partner--never have or in fact lose insight into the implications of their diagnosis. Read about anosognosia--it's a true inability to realize that they have deficits, and 70% of those with dementia have it to one degree or another.

I wish you well, there are many of us here who know what it's like to lose your soul mate and your spouse and all that that implies. I'm sure others will chime in.

Ed1937

Sorry you are dealing with this, but welcome to the forum. It is a good one where you will get help, understanding and support.

Just so you know, M1 is himself, a doctor. And he gives excellent advice and information for everyone here.

I guess if it were me, I would opt for taking the new dementia drugs. They should be helpful, especially in early stages. Yes there may be side effects, but if they work as expected, it can be a major win for people with dementia.

My personal feeling is that a diagnosis is no more than a professional best guess which type of dementia one has. It is difficult to get the diagnosis right, and different things are considered when giving the diagnosis. It is not uncommon for a diagnosis to be changed at a later date, and a person may have more than one type of dementia.

How do you support your LO? You tell them you love them, and you'll always be there for them. But don't promise to never put them in a long term care facility. If you do that, and it comes to the point where you have no choice, it will make placement harder, probably for both of you.

One thing in particular that you should do early is to make an appointment with a CELA (certified elder law attorney). They will tell you how they can protect many assets, draw up legal paperwork, including POA and financial solutions. You will also get a better understanding about how Medicaid works in your state. Medicaid does not mean that you will be left in poverty. This needs to be done early because if you wait too long, you will not be able to get the full benefit from seeing one, and you will be sorry.

If you have any concerns about what is happening or how to handle things, please post. You will get help here that you will not get from the medical community.

Denise1847

Hi MrFidosMom,

My husband had severe sleep apnea for years and would not use the CPAP. When his dementia symptoms started, I asked the doctor if the apnea was the cause and was told that it may have contributed to his dementia. He lost weight and was retested for apnea and it was improved. Because dementia had advanced, the doctor didn't think he would tolerate the CPAP and that it was going to improve anything.

As far as supporting your DH with the diagnosis, my husband is in extreme denial so we don't discuss it because it only causes distress. He won't remember the conversation anyway. This disease is unique in how to support the afflicted person. Most diseases you and the patient are partners and you can walk together in decision-making etc. With this disease, it becomes a dance where the caregiver is trying to read the current state of the person and gently guide them through the confusion and to keep them safe.

MrFidosMom

Thank you to everyone for the comments/suggestions. Will be calling our living trust attorney to get suggestions for an attorney help with SSDI, Medicare, etc.

Have been sharing alot of info with his family and son. His siblings want to wait for the definative diag after the Pet Scan to tell his father as he was very upset after an experience with him recently.

He is aware of his diag as he broke down while we were working on a puzzle together today, and was saying he does not want to leave me. I was telling him I am going to be with him, and it was not going to happen tomorrow, it will take time and we are taking it one day at a time.

Lgb35

my DH is 59 and has been trying to get a specific diagnosis for the past couple of years. We have had MRI and spinal tap done. MRI shows definite atrophy in several areas and the spinal tap results were borderline for EOAD. At this point he is diagnosed with MCI. He has been on doneprezil for about a year. I have noticed more issues with memory and word finding in the past 6 months or so. He still works although he has noticed challenges. He still drives. He has had two neuropsych evaluations which shows some decline but mostly stable at this point. He is trying to live life as if nothing is happening but I cannot do that. I am the one who will be left to hold the pieces together. I work full time from home and hope to be able to keep doing that for the entirety of this journey. He is not at a point where he is comfortable telling people about it and does not allow me to tell other people. While we don't have a definitative diagnosis, we have been told it will progress and to start preparring.

Hang in there. I know we are at the infancy in this thing and I just recently joined the group.

jfkoc

Take a deep breath...you will be doing this often.

I want you to start with diagnosis. Memory test????? Simply an indication that a memory problem exists. There is a protocol that needs to be followed and it starts with ruling out treatable causes for memory problem. You will be the one to understand this and to make certain all of the steps are taken.

If/when treatable you may be left with an educated guess of exactly what kind of dementia your husband has and over time that diagnosis may change.

So, what to do. Please start with info online that diagnoses "Alzeimers". Diagnosing Alzheimer's: How Alzheimer's is diagnosed - Mayo Clinic

Re Lecanemab; this is the first time I have seen this med. Googled and it seems to be for early stages which, if you husband cannot drive or be alone I suggest he is not in early stages. Regardless, I would read all you can find about this drug. I use drug.com but there are other sites. You want to know all there is to know before purchase.

How do you support? with love and reassurance that you are by his side. I would not start any conversations with him or anyone else at this point. I would listen to your husband and try to read what iss between the lines. Hugs are also a good thing.

Please come here for information and your support. We understand and we care and will be here for always!!!!

-Judith

Sunshine2024

Hello

I'm in the early onset dementia caused by ALZ boat with you.

My husband is 52, was diagnosed in Feb this year after a month of testing, week in the hospital, 2 spinal taps, MRI and many appts outpatient.

If you have access to a Neuro Psychologist we had the best info from their testing. My husband is unable to work and drive due to visuospatial issues. He had trouble with using a laptop at work and that kicked off all of this.

A friend is an internist and said to look into the drug you mentioned. It’s on my list. Along with visiting facilities - just in case.

Tomorrow my husband is starting at a local memory care day program. He needs socialization. I work from home and he’s often 2 feet near me. Often.

Ask some questions and keep taking it one day at a time.