Not Sure Where to Turn
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Hi Blake. So terribly sorry you had to join us, but welcome. I’ve found everyone here to be knowledgeable and incredibly caring. I hope I can start you off and others will fill in. You are not alone. Everyone here can and will help you.
Please find a CELA attorney to work through your financial and power of attorney materials as soon as you can. You may have done that already, but getting financial and health power of attorney taken care of now will help you later.
In my state, the doctor that gives a dementia assessment is a neuropsychologist. When my DW did it, it lasted 2 full hours. If you are seeing a neurologist, perhaps he or she can recommend one.
I found caregiver help by word of mouth. I’m in a small town, so that worked out great. I have two caregivers now, as the first wonderful woman I got then recommended another.
Other folks here have had decent success in calling services like care.com
I would also add that finding a geriatric psychologist can help you in getting medications to help you dear wife — antidepressants and anti-anxiety in particular, but sleep aides and some that claim to slow dementia progress are things you may find yourself wanting/needing. Our neurologist recommended one.
If you know it’s dementia, trust that gut. Hang in there.6 -
I recommend a university medical center with a department on dementia care as a place to start, that’s where we went and it was excellent.
You need a neurologist, neuropsychologist or geriatrician who specializes in dementia. I found my DWs PCP to be completely unprepared to deal with a dementia patient. There are a number of different types of dementia and PCPs are poorly equipped to hone in on the actual type and use “Alzheimer’s” as a catch all. (It turned out my DW, also EO, had a non-Alzheimer’s version called Semantic Dementia.) It can be important for medications to know the actual type as some are contraindicated for different dementias. My very limited understanding of the new treatments is also dependent upon the specific dementia.
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Hi Blake, welcome! I found that many providers don't want to diagnose dementia in younger patients even when it is obvious. Dementia is the symptom (memory loss, trouble finding words, lack of initiative, the whole list), and it may be caused by a variety of disease processes, of which the most common are Alzheimer's, mixed dementia, and vascular dementia.
Because there is no cure or effective treatment for any of those, providers find it difficult to make the diagnosis. They're human like anyone else, and their biases can get in the way.
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welcome. Sorry about your wife. As others have said, dementia is the overarching disease with Alzheimer’s being a type of dementia. There are many more types. Dementia is a progressive disease for which there is no cure. That’s why many doctors are hesitant to discuss it. A cognitive test can only determine memory loss, lack of executive function and visuospatial difficulties. It’s a 2-4 hour ordeal. The only thing it provided in my husband’s case was that he had moderate decline and should no longer be driving. My husband’s initial diagnosis by the Neurologist was white matter disease, dementia, probably vascular. 18 months later I was sending her lists of his symptoms and behaviors and she looked at his last CT scan and responded “ consistent with Alzheimer’s-Posterior Cortical Atrophy. I share this so you understand how difficult a definitive diagnosis can be. A spinal tap may provide that but I wouldn’t have put my husband through that. There are infusions available for EO that you might need a diagnosis for. I recommend learning all you can about the disease and caregiving. The book “The 36 Hpur Day” is a good start, then search online for dementia caregiving videos by Teepa Snow or Tam Cummings. Contact your county’s Agency on Aging for resources. Many have day care. You can also call the Alzheimer’s Association toll free number for resources 800-272-3900. Come here often for info, support or to vent. We understand what you’re going through.
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So sorry you have to join us here but this is the right place to be for help. Your difficulty in getting a doctor to spend time to fully assess your wife is such a reminder of what we experienced with my father-in-law. Despite our pleadings, letters describing his symptoms, etc. we got nowhere with his doctors. It was only after he talked about suicide, was hospitalized for a month or so that he got a diagnosis. When my wife started to experience symptoms, I had to become relentless in finding doctors who would give the time to her for a diagnosis. If your doctors are not being helpful, find other doctors. It is true, at least in our case, that once a diagnosis is given, the doctors can offer little and almost step back from the patient leaving us to flounder. This site and a doctor finally telling me to contact hospice helped. If it has been five years, you might want to ask a hospice provider for an assessment. You have to fight for your wife and be willing to make changes in providers, search out resources, ask for help here and, by all means, take the advice above and get all of your affairs in order now, don't wait. So sorry that you have joined us but the people here can become your best "unknown" friends in this journey.
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Hi @blakecurry
I ditto all the above advice. This is a terrific group of very special people that I have come to rely on. I am glad you found this site.
I had to ‘demand’ a referral from our PCP last visit (2 weeks ago). Finally have an appointment with neurology group next month. I am not expecting miracles, just some support and perhaps advice from healthcare professionals who have more expertise with this awful disease!
Check in with the group often and let us know how you are doing. We all care! Sending you hugs 💝 and prayers.
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Welcome.You might try calling your local commission on aging to see what support services are offered in your area. As far as help from the doctors, all they can really do is treat the symptoms and even that can be difficult to get some of them to do. I found learning more about dementia helped me cope and make better decisions. Knowing what might be coming down the road is better than not knowing what to expect next, for me anyway. If you haven’t taken care of legal matters, I agree that is very important. Dementia care is very expensive and if you are still working there is a lot to consider. Have you thought about taking time off work temporarily using the family medical leave act? I have attached some resources you may find helpful.
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I am so sorry you are going through this. You have gotten excellent advice. I would add that Oasis Senior Services is located in multiple states. They will help you find excellent home care and out of home facility placement with assisted living and memory care. An MRI, PET scan and blood test to diagnose Alzheimer’s are a must. The cognitive testing should take hours to determine cognitive function. My husband easily passed the abridged cognitive tests by the VA that were a joke. They told him that he was fine when he had already been diagnosed with MCI after hours of extensive cognitive testing by a team of doctors who specialize in brain diseases. Look on this site for advice on what to do when your loved one is diagnosed. You have to do all of this asap to protect your loved one and yourself.
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When I suspected dementia, I made a list of all of the abnormal/memory issues and took to our PCP. She ordered extensive blood test and an MRI. The MRI was the significant diagnosis that showed moderate/severe atrophy of the parietal and temporal lobes. We were referred to a neurologist who tested and then sent to a neuropsychologist for the 4 hour testing. The diagnosis was MCI. That was in 2021 and our Neurologist has since diagnosed him with Vascular Dementia.
It's important to note that a Vitamin B-12 deficiency can mimic dementia - we have a friend who was showing symptoms and learned from a blood test that it was a B-12 deficiency and is fine now.
Good luck to you, and this is a great place to come to for information from people who are compassionate and have the experience with this dreaded disease.
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I found a neurologist whose specialty was memory care. She was a godsend. Her office also provide a social worker from Alzheimer’s Association to meet with the family during my husband’s appointments.
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Blake,
Welcome and sorry you have to be here…I am and have been going through the same thing with my DH. He is 64 and I am 62. Over the last 3.5 years we have been to 3 different neurologists and one was at a very prestigious hospital in the DFW metroplex where they have a Alzheimer's/Dementia research center, that neurologist actually told us that the "medicine" they prescribe doesn't actually work. Thank goodness that we have a good PCP who is prescribing med's for my DH. But with all that being said…I have learned and received some wonderful advice from this group. Bless you and your wife through this journey.
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Thank you! We saw a great neuropsychologist three years ago. He did two full days of testing (neuropsychological analysis) and his report said not dementia. Jo thought he was very professional and thorough, but I'm not sure he really got a full grasp of the situation. That was a very expensive couple of days.
The neurologist gave her five words, talked to her for ten minutes and asked her what the words are. She didn't remember any of them. Then told us it's not dementia.
There have been 4 psychiatrists. The first three never even acknowledged there was a cognitive problem and kept giving her depression medication. The latest one said it's dementia after talking to her for 5 minutes. No testing done.
That's been the most frustrating part is just the lack of any doctor actually caring enough to try to really help.
So for the in-home care, does insurance cover some of that? Or a government program like disability? She has been a stay at home mom and hasn't worked for the past 25 years, so it seems like she doesn't qualify for any programs because it's not keeping her from working since she hadn't been. The trouble is it's starting to affect my work and I need to work for 5 more years.
so it's not enough to have to deal with your spouse fading away. You also have to deal with figuring out how to get these things done. And no, none of the doctors have offered the least bit of advice.2 -
I think you will find most doctors unhelpful on the advice front. At least, that's what I've found. The geriatric psych has been the most helpful in being sympathetic and doling out the appropriate medications, but our meetings are still only about 15 minutes.
It took me three different visits with a neuropsychologist to get a dementia diagnosis — 2020, 2022 and then again in 2023. At least Medicare covered all of those visits/tests. The first two were mild cognitive impairment (MCI). By the time I got a diagnosis, my DW was in late Stage 4/early Stage 5. I remain a little upset that the neuropsych didn't give a dementia diagnosis on the second visit. She held back because my DW had been the caregiver for both her mother and father with dementia and she thought that might be why my DW was having difficulty. I knew then it was dementia, but that little bit of hope she gave me that rest and quiet would help my DW ended up crushing me emotionally. It kept me in denial even as I saw my DW going downhill rapidly.
Perhaps another visit to a neuropsych is in order?
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I’ve mentioned this before in other posts, we are getting assistance through our county for in-home care. Check to see if you have something like that in your area. Where I live it’s called the Alternative Care Program. Their goal is to keep people in their home who would other wise qualify for a SNF. It’s been extremely helpful to us in that it helps us afford in-home care which is awfully expensive.
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Where we live, in home care is out of pocket unless you are a veteran who is rated for a disability and qualities for assistance. I would contact an attorney who specializes in SSDI and ask if your wife would qualify. Look into day care facilities in your area where you could take your wife while you work. Some people on this site have been able to work by keeping their loved one at a day care option.
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Most communities will have a local commission on aging. They will be able to tell you about services available in your community. I believe as a general rule a full 8 hours of care will probably need to be coved out of pocket and it’s expensive.
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I would suggest seeking a consultation with an SSDI attorney. Even though she has not worked, given the length of your marriage, she may be eligible for some benefits.
The in home care part can be difficult to find the right person and also expensive. You should look into your FLMA benefits at work. This may afford you some time away from your job to figure things out.
I was in a similar situation following DW diagnosis. We were so overwhelmed with just absorbing the reality of the diagnosis, and yet felt completely on our own to figure out how to effectively move forward.
That experience made me think there should be dementia care coordinators. Someone to help you with the leg work of finding in home care, finding proper attorney for the estate stuff, and just give you the checklist of things to be done and help you work through them. It might only take a few hours a week, but it would have been a tremendous help to have someone helping me do things rather than just having people telling me what needs to be done.
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So by now you are aware that you are not alone.
This is not an easy journey and unfortunately each journey is individual. You are going to have to find your own route to some extent.
I suggest that you to to alz.org and read everything. When you come to something you do not understand google or post about it.
You can post about almost anything here and get a supportive response. We understand and we care!!!
Finding help? Tell people you are looking and by all means check the obits where the great caregivers are thanked.
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we also went through a few years chasing a diagnosis. It is frustrating and makes you want to give up. DH is 62 now and I am 55. We began seeing neurologist 4 years ago and finally got a diagnosis of semantic variant of FTD. This variant is not very common and even the specialist didn’t seem to have it on their radar. We went to Cleveland Clinic in Ohio a few times throughout the years and they did mention semantic variant as a possibility since our first visit.
we have gone through about 4 neuropsychological testing sessions which monitors the decline and which areas of the brain were decliningSeveral MRIs which showed atrophy primarily in the left temporal lobe. He also had an Amyloid PET scan which either diagnosed Alzheimer’s or ruled it out. His ruled it out so he had a FDG PET scan which showed the same problem area in the left temporal lobe.
The neurologist at this time did not diagnose FTD due to the frontal lobe functioning. We took all of this back to Cleveland for a probable diagnosis of semantic variant.
I recently talked to a CELA and the reason this was so important is due to our age and income. We have a 5 year look back when it comes to Medicaid coverage. It is important to get your assets set up in a way they would not be considered for Medicaid eligibility.
Medicaid is important because it’s one of the very few options for financial help in caregiving assistance. Remember there is that look back period so it’s won’t kick in immediately.
you can contact the office on aging in your area for a lot of resources you can contact or use. They may even be helpful finding care.
Another resource might be an inpatient psychiatric hospital discharge nurses. They assist setting up services after discharge and would know what resources are available in your area.
best of luck to you2 -
I am sure each state may be different in how they manage Medicaid but in Georgia, for the spouse, our attorney advised that the lookback period is not applied. Thus, the spouse can transfer title, ownership, etc. to the other spouse and should Medicaid be required, apply without penalty via the lookback period. I am not an attorney, but utilized one, to make all necessary changes once my spouse had a diagnosis that feel within our POA language of being unable to make her own decisions. Getting this done ASAP was important to take it off the table of things that have to be managed as you manage the care for your loved one. Just something to ask about from your attorney to be sure if the lookback is applicable to the spouse in your state.
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This is excellent information. Most states allow them to go back five years in your finances.
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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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