Help me diagnose my dad?

Melanie12

Hello all! I know I should be asking a professional for help but it’s really hard to get my dad to a doctor and when he was in the hospital before I went nuts trying to get an answer from anyone. 

So in the beginning of 2020 my dad was his usual self…he would fumble on words and forget things here and there but I would always just tell myself it’s cause he’s old and old people forget things (he was nearing 80.) looking back I can’t believe how much in denial I was. I wouldn’t even for a second let anyone say he might be forgetting due to dementia. Up until June of 2020 he was still driving, grocery shopping, and taking care of himself. I started to noticed a decline around March in his psychical capabilities. He started needing his walker more frequently, I had to start cooking for him and me and my sister started grocery shopping. He was still the same mentally but physically he was declining. Then in June he lost his ability to walk. A couple days later he suffered from pneumonia and was hospitalized…and ever since then he hasn’t been the same. He’s suffered from hospital delirium before (in 2017) and when he came home he returned to normal…but this time was different. He was still in a different ‘state’ The last 2 years have been ups and downs. There was a day….a couple weeks after he came home from the hospital where he was completely lucid…and I thought to myself “this is it! It was all just delirium!” It was such a sweet false hope. I should mention at the time of his hospital visit it was 2020 covid so it was nearly impossible to get a hold of any doctors. We were only told he had brain Apashia which led to so many more questions we didn’t know the answers to . In 2021 he was bad…he would say he’d wanna go home all the time and call out names that weren’t there. On New Years of 2021 it was like he wasn’t even there. Then in 2022 it seemed like he was getting better…no more hallucinations or saying he wants to go home. He’s still capable of feeding himself and knowing the people he lives with. This past new year it felt like he was actually present with us. I know I’m probably being dumb and holding onto the tiny bit of hope I have left…isn’t that what we do as humans though? I guess my hope is that he gets more time like this….that he gets more time to see me and remember who I am and who his family is. That he gets to feed himself and remain some dignity. I recently moved out…it’s been a couple months. Leaving was the hardest decision I made but I made sure he was in good hands before leaving. He’s with my mom, sister, and a care taker who’s part time. I’m not with my fiancé and I go see him once a week. When I go visit him he’s always happy to see me and I want to sob everytime I leave because it hurts not living with him anymore. This post is super long and I’m so happy if you read this far…I know I didn’t provide much info but if you have any idea of what he has and what stage it is I would much appreciate it! 

As of right now he can -have light conversation, feed himself, express his needs, recognize his family, let us know when he’s soiled himself, retain some information, and his personality is stable. 

He can’t - walk, dress himself, remember little things, focus on 2 things happening, use the remote, finish sentences. 

Thank you for taking the time to read this. It really means a lot and I read all of your comments and feel warm that you took the time to respond. 

May flowers

Welcome to the board, but sorry for what is happening to your dad. When they diagnosed my FIL years ago, the neurologist ran a lot of tests including brain scans to rule out treatable causes for his dementia behaviors first as well as other conditions that can look like dementia early.

One of my siblings had dementia-like behaviors, but it was caused by a brain tumor that was operable. My mom also had dementia-like behaviors with her ALS, but the onset was loss of her ability to walk and loss of fine motor skills like buttoning a shirt, pushing buttons, holding a remote, and then later some cognitive decline (but not severe like dementia). So that is why getting a dx is important.

I’m sorry you had such an experience at the hospital. I noticed throughout covid, a lot of doctors avoided seeing patients and family members, but that may be different now, in an office setting. When you say going to the doctor is difficult, is it physically or is he against going? If it is physically, you might consider a medical transport. If he is against  it, you could tell him he’s going for a check up.

The ups and downs are difficult but normal. My FIL will have a string of good days and I just cherish them. 

harshedbuzz

Melanie-

I already posted a hyperlink on your other thread to the Tam Cummings 7 Stages of Dementia in the other thread. Based on what you are seeing at home, you should have a sense of where he is on the continuum. Keep in mind that this is based on Alzheimer's and disease progression for other kinds of dementia can be somewhat different. It's also possible for a PWD to have more than one type- Alz and VD being most common.

What you are reporting sounds a little atypical. Perhaps family missed early symptoms or wrote them off as normal aging which make it seem as if he was "fine" and then suddenly wasn't. It sounds as if he was having memory lapses and some word-finding issues you ascribed to aging. The physical mobility symptoms of dementia tend to come later in Alzheimer's. It could be he has something like Parkinson's with dementia, a stroke or a brain lesion. He could also have some sort of mobility issue completely unrelated to the dementia.  

Your dad needs to be seen by a doctor. His medical proxy needs to make that happen. Ideally, he should be seen at a teaching hospital's memory clinic where specialists can tease out what is going on. His PCP could start the ball rolling by ordering the blood work needed to rule out certain hormone and vitamin deficiencies that can sometimes be reversed with treatment and also imaging that could rule out a tumor of some kind. 

You mention a hospitalization for pneumonia. Was this COVID-pneumonia? There is some thought that COVID is associated with a dementia diagnosis. Again, a specialist could best advise the family. Speaking of family, I am not surprised you got little clarification from doctors when he was last hospitalized. Because of HIPAA, they can only discuss with individuals your dad included on his paperwork which is most likely his wife. 

Lasting Brain Symptoms From COVID Infections (aarp.org)

MN Chickadee

It does indeed sound like something other than Alzheimer's. We are no substitute for medical advice. Given that it does not sound like Alz then a proper diagnosis is even more important. The other dementias may be treated differently. Sometimes a drug to help Alz is bad for a different form. Sometimes there are different interventions to take. I would urge whoever his POA is to get him in to his PCP immediately to start the process and they can refer him to a neurologist after the basic work is done. Given that you intend to get him to your wedding I should hope a trip to the doctor for what could be life changing interventions would also be possible. 

Long term covid is an interesting thought as HB suggested. It can indeed become a neurological disease in addition to respiratory. I also wonder about Normal Pressure Hydrocephalus or Parkinsons. They can follow different trajectories. Alzhiemers and vascular dementia usually start with short term memory problems and the memory gets worse from there, physical issues come later. Vascular is often a plateau followed by a sudden nose dive followed by plateau. NPH usually begins with walking/balance issues, incontinence, and some confusion but not necessarily the massive memory lapses like Alz. It often requires a shunt be placed to drain fluid. Parkinsons related dementia can present in various ways, often with physical issues first. Some people have a mixture of two types of these dementias. All this is to say it will be impossible to figure out without proper testing. Blood work, MRI, and other things only the doctors can do. 

M1

Melanie this may sound harsh, but if he is not ambulatory and is incontinent, he is close to the end of his life, regardless of the cause; how much to pursue diagnostically can sometimes be a tough call, and it can be hard to know when to make the transition from aggressive pursuit and treatment of problems to focus on comfort and quality of life.  I agree that long-term effects of COVID (if that's what his 2021 illness was) could certainly be contributing, but it may be a moot point.  It sounds like from your description that he was having some significant difficulties even before that illness; many times there is more trouble brewing that is immediately apparent (his forgetfulness, word loss were probably clues and would indicate stage 3-4 disease at that point in all likelihood).

Your mother may know more about the details of his condition than you do?  You mentioned difficulty in your relationship with her, but perhaps you could get more specific information from her if she is willing to discuss with you.  I also wonder whether a Hospice evaluation could help your family and provide more support for him.  Might be worth asking his primary caregivers about, anyway.  They may not be aware that you don't need a doctor's order for a hospice evaluation, the family can call and request from a Hospice agency directly (and Medicare covers).

He is fortunate to have such good family support, it's obvious you care about him very much.

jfkoc

I would keep trying to get a diagnosis in order to rule out treatable causes. Just because he does not want to go does not mean that you can not get him to a Dr. You can make up any numbers of reason for him to go...medicare requirement, insurance requirement, mother has an appointment and want his support are some that have worked. Make certain that the Dr is in the loop and has knowledge of the problem. Write down what you are concerned about and mail it ahead. Take two copies with you...one for the Dr and one for your mother. Also take pencil and paper with questions.

Approach is everything and it does not have to be straight forward. 

Please go online and google Alzheimers diagnosis. That way you can make certain proper protocol is followed. You want the i's dotted and the t's crossed.

Melanie12

Hello everyone! I just wanted to clarify him being in the hospital in 2020 he was covid negative! Does anyone know if a neurologist could come to the house? I know that seems not likely because they would need to do brain scans. So would it be best to have him transported to the hospital for a couple days to run tests? I know hospitals are so over crowded now so I’m not sure if that will be alright. Someone said this sounds like end of the life for him and I don’t believe that’s the case. He’s eating just fine (he’s even gaining back the weight he lost last year.) he’s healthy physically besides his brain of course and he can’t walk. And he’s sleeping a good amount every night and taking a 2 hour nap in the day. He sits in his wheelchair for 4-5 hours throughout the day and is able to feed himself and watch the tv. 

Also thank you to everyone who commented! And if anyone wants to talk to me my messages are always open! I would love to chat! 

harshedbuzz

Melanie-

M1 raises a good point about the limited benefit of a diagnosis at a point where your dad is already in what appears to be in the late stages   of a terminal illness. There are some medications for Alzheimer's (that can also be used for some other kinds of dementia but are detrimental for others) that appear to help some PWD for a time in lessening symptoms but not slowing the disease process. These drugs don't help everyone who takes them and a significant number of people who trial them have to stop because of unpleasant side effects. 

That said, if he was really out of it during his 2020 hospitalization, they may have run the bloodwork to test for vitamin and hormone deficiencies that are treatable. If you are signed up with a patient portal, you may have access to those records. FWIW, the hospital that missed my dad's diagnosis (previously known for missing Spiro Agnew's leukemia) never tested for these, the big city Ivy League teaching hospital did before he got into a johnny. If these tests weren't run, his PCP could easily order them rather than wait to see a specialist. 

You aren't going to find a visiting neurology service. You would need to hire medical transport unless he can transfer to and from a car-wheelchair. The kind of gold standard evaluation for dementia jfkoc referred to typically requires a number of appointments. Generally, there is an intake appointment where family gives history and concerns, a physical is done, and a preliminary testing using screening tools like MMSE and MoCA. Then the doctor discusses next steps- usually bloodwork and some sort of imaging which are done at another time/location- and schedules a follow-up appointment to discuss findings. Sometimes neurologists will want PWD to have a neuropsych evaluation with a psychologist which can last about 5 hours and is often split into 2-3 days. 

He wouldn't be admitted for a dementia workup although you might get a neurology consult if he were hospitalized for something else and showing symptoms assuming he was lucid enough to cooperate and they had someone on staff familiar with dementia. It can take some time to see a specialist. When the first hospital referred my dad to neurology in August, the neurologist in the area was scheduling for February-March. Dad developed psychosis and we took him to the second teaching hospital the next week where he was admitted and given a preliminary diagnosis. He had mixed dementia and one of those was treatable. His cognition improved quite a bit in the months after he was treated. Because he was seen in the hospital, he was fast-tracked to the memory care practice which meant he was seen and completed the diagnostic tests needed in October and November and was given his official diagnosis in late December. I live in a medically well-served area; waiting lists could be longer in other places.

Nothing moves quickly around this. 

HB