Those With Dementia Experience...

[Hunter's Moon]

My mother had neurological testing done in December of 2011 that showed marked delays in word recognition and motor skills (tapping test). She was diagnosed with Mild Cognitive Impairment and the neurologist told her she was borderline Early-Onset Dementia. She also has significant Depression which causes more memory issues.

 

She is taking 10 mg Aricept but her memory and motor skills are continuing to decline. She forgets words many times a day, gets irritated and aggressive in normal, non-stressful situations, and loses track in the middle of conversations. Sometimes, we are driving down the street (near our house) or walking the dog and she asks where we are. This is all becoming increasingly common.

 

There is a history of dementia in her family (her mother died of it in 2009) and she has had memory issues for about 3 years now. We are now at the point where we are talking about SSI for her because she is unable to work due to her memory issues. I plan on writing a letter to her doctor but do not know how to go about it. I don't even know how the SSI process will work because I don't believe Mild Cognitive Impairment is enough of a diagnosis but she has gotten worse since the testing was done. I know her doctors have to write letters to SSI as well, so I'm trying to get them to understand what her daily life is like. She tells him she is fine every time she sees him and would rather deny this is all happening than get the help she needs.

 

I appreciate any advice.

[Twigs]

no advice only :grouphug::grouphug::grouphug:

[TranquilMind]

My mother had neurological testing done in December of 2011 that showed marked delays in word recognition and motor skills (tapping test). She was diagnosed with Mild Cognitive Impairment and the neurologist told her she was borderline Early-Onset Dementia. She also has significant Depression which causes more memory issues.

 

She is taking 10 mg Aricept but her memory and motor skills are continuing to decline. She forgets words many times a day, gets irritated and aggressive in normal, non-stressful situations, and loses track in the middle of conversations. Sometimes, we are driving down the street (near our house) or walking the dog and she asks where we are. This is all becoming increasingly common.

 

There is a history of dementia in her family (her mother died of it in 2009) and she has had memory issues for about 3 years now. We are now at the point where we are talking about SSI for her because she is unable to work due to her memory issues. I plan on writing a letter to her doctor but do not know how to go about it. I don't even know how the SSI process will work because I don't believe Mild Cognitive Impairment is enough of a diagnosis but she has gotten worse since the testing was done. I know her doctors have to write letters to SSI as well, so I'm trying to get them to understand what her daily life is like. She tells him she is fine every time she sees him and would rather deny this is all happening than get the help she needs.

 

I appreciate any advice.

She has no infection in her body? Has anyone checked? I learned that infection does not present with normal symptoms in the elderly.

 

The hospital docs thought my Mom had dementia. She actually had c dif., a really bad infection that took months to clear up. Honestly, her memory/some functions never returned to fully functioning before she died, but instead of going in a nursing home as they suggested (!!), she went back home to finish her life in her own house, as she wanted. I just took over the bill paying, and some household management functions for her.

 

It's worth investigating. Lots of elderly people get UTI's with no symptoms like we would have also.

[Veritaserum]

Can you film her or keep a journal to give to the doctor?

[kalanamak]

She forgets words many times a day, gets irritated and aggressive in normal, non-stressful situations, and loses track in the middle of conversations. Sometimes, we are driving down the street (near our house) or walking the dog and she asks where we are. This is all becoming increasingly common.

 

This is getting out of the mild range. How old?

 

IME, SSI, for whatever reason is slow to come and hiring a lawyer is the way to go unless you are either 1) very clever and persistent or 2) the person is so disabled a 3 year old child can see it.

[Hunter's Moon]

She is not elderly, she is 56. I shouuld have mentioned that in OP.

[kalanamak]

She is not elderly, she is 56. I shouuld have mentioned that in OP.

 

 

I'm assuming she has seen a good neurologist. Have they diagnosed Pick's or frontal lobe dementia? Unfortunately, people do get it this young, and I encourage you to get a DPOA for health and finances NOW (and a med alert bracelet). And make plans on where she will live in the near future, and if things get bad (wandering, violence). It is easier to deal with a 90 year old with dementia than a 50 year old with dementia.

 

:grouphug::grouphug::grouphug: This is really tough on families.

[Random]

 

IME, SSI, for whatever reason is slow to come and hiring a lawyer is the way to go unless you are either 1) very clever and persistent or 2) the person is so disabled a 3 year old child can see it.

 

 

 

:iagree: Except for #2. Even people that disabled need a lawyer.

 

 

I'm so sorry. My grandmother ended her journey with Alzheimer's three years ago, and over the past six months, I've noticed my dad starting a similar journey. :grouphug:

[EmeraldGirl]

I am going through this with my 61 yr old friend whose only family to help her is her 28 yr old single son. I am trying to help him by providing respite, direction (see below), rides, etc.

 

Anyway, go to the official website for Alzheimer's Association (http://www.alz.org). There you will find a checklist of what is normal and what is Alzheimer's/dementia. Search the site. I found it very informative and helpful.

 

I just found out that the process for receiving SSDI is accelerated and her neurologist should be willing to provide the documentation you need to get her on SSDI provided they have done all other testing to eliminate any other causes for her symptoms.

 

It is extremely important you get all things in order now before she loses any more of her memory and abilities. You need a lawyer that specializes in elder care issues.

 

It is a long, hard road to just be the caretaker; and then all the paperwork on top of that is exhausting. Many :grouphug::grouphug::grouphug::grouphug: to you for sticking by and assisting your mom through an extremely difficult journey.

[Katy]

I agree with everything here. Check for infections, check for vitamin d and b complex deficiencies too.

[Dobela]

My grandmother's dementia was much worse during the time she had a bladder infection. She was almost completely out of her senses until a friend finally took her to the doctor. Once the infection was gone, she returned to more normal.

[Hunter's Moon]

She had a CT scan done last May which will be repeated shortly. It showed as normal. Her mother began having "mini-strokes" at about my mother's age which is the reason we decided to do the CT scans.

 

Her Vitamin D level was low about 1 1/2 years ago but she refused to do anything about it. I am unsure of the level now. She has depression as well so doesn't go out much. The neurologist did say depression is a likely cause of the acceleration of the memory issues.

 

I am just lost as to what to do from here. At this point, I see her memory issues interfering with her life and so does my father, but she is also independent enough where we cannot force anything on her. I would like to write a letter to her doctor but don't know really how to word it.

 

She would not be able to hold a job because of her memory issues, but we also can't afford a lawyer for SSI filing. Based on the Mild Cognitive Impairment diagnosis, we are sure she would be denied, be we also know it is beyond mild at this point.

 

ETA: My father and I kind of feel like we have to wait until it gets to a certain point where she relies on us to care for her before we can file for SSI. I already have to accompany her to appointments, store, etc because she forgets things and I worry she will get lost. She has trouble making decisions without someone else's help (setting an appointment time) and gets aggressive over the simplest things. But I feel like her doctor's don't see this as enough of an issue to help us. Like I said, she is independent enough where I can't choose her doctors for her and stuff.

Edited July 17, 2012 by BeatleMania

[Harriet Vane]

The others have given good advice. I will just add a few thoughts.

 

You can talk to the dr privately about your mother, but he cannot talk to you about her. Call him before her appts and tell him what you are concerned about. Ask him to keep your calls absolutely confidential. When you call, start by saying that you understand that he cannot share information with you, but that you want him to be aware of some things you have observed in your mother's condition. Don't ramble. Have a list of what you want him to know and speak from that list. Also try to tell him how frequently certain behaviors occur (daily, couple times a week, once or twice, etc.).

 

I have never applied for SSI. However, one thing I do know about governmental stuff is that you will likely be denied, so plan to be persistent and to re-submit and be the squeaky wheel. Also I don't see the point in waiting--it's a long process, so get started.

[NorthwestMom]

The others have given good advice. I will just add a few thoughts.

 

You can talk to the dr privately about your mother, but he cannot talk to you about her. Call him before her appts and tell him what you are concerned about. Ask him to keep your calls absolutely confidential. When you call, start by saying that you understand that he cannot share information with you, but that you want him to be aware of some things you have observed in your mother's condition. Don't ramble. Have a list of what you want him to know and speak from that list. Also try to tell him how frequently certain behaviors occur (daily, couple times a week, once or twice, etc.).

 

I have never applied for SSI. However, one thing I do know about governmental stuff is that you will likely be denied, so plan to be persistent and to re-submit and be the squeaky wheel. Also I don't see the point in waiting--it's a long process, so get started.

 

I agree that you and your father need to communicate with the doctor outside of the time the doctor spends with your mother. Phone calls should work for this purpose. Your father needs to get involved here since he will be making medical decisions for your mother if she progresses.

 

There are a lot of things that cause cognitive impairment and your mother needs a thorough examination, especially since it is progressing. Don't wait! The behavior that comes with dementia can be dangerous to the patient. Steps will have to be taken to keep her safe. Please do not let her drive! People with dementia frequently wander and get lost. My mother eloped from her caregivers three times before I placed her in a secure facility. It was terrifying.

 

I also agree with the PP who said to get a DPOA for your father and you as secondary NOW. It will not be issued if she is too impaired so it must be done ASAP.

 

:grouphug::grouphug::grouphug:

 

Dementia is horrible. I am so sorry.

[Tarreymere]

I have a relative who is so disabled that a three year old could see it (love that) and he was denied. This person has 2 missing limbs and the ones that are present are not completely functional (one arm and one leg with multiple issues), ambulation problems, and mental impairment and was denied. You NEED a lawyer, honestly. There is no way around that in my experience. I've rarely heard of anyone who got SSI without getting fed up and getting a lawyer. You will likely find that the lawyers who do SSI cases take payments for this reason.

[Denisemomof4]

OMG, you have GOT to have her tested for Lymes Disease!!! The doctor I spoke to at length a few years back said he gets so sad to see the young people in nursing homes with early onset dementia. He worries that many of them hav Lymes Disase becau he considers Cape Cod tick central! And he is also from Lymes CT.

 

Three of my family members were judt diagnosed with Lymes a couple of weeks ago. I was very upset because I can see dh's mental decline. I INSISTED he go to the dr and hewas told he wouldn't do anything for memory unless it was causing marital issues.:confused: anyway, after my research I am relieved to know his cognitive function will return after proper treatment.

 

Lymes tests are not very accurate but it is a good place to start. See if your mother has any other Lymes symotoms. Is she arthritic? If she has other symptoms I will get you the information for more accurate testing. There are two tests you will have to pay put of pocket for, I believe they are around $700 for both. One lab is called Igenics and another is in Pa. I will get you them if you want them.

 

Even dd12 has significant cognitive issues. The dr we saw watched his straight A dd go from the top of her class to not being able to read at all.

 

And check for other diseases and infections.

 

Lastly, do a search for coconut oil and alzheimers. I saw a fascinating news clip about a dr who's dh was diagnosed with alzheimer or dementia and how he changed significantly after she added coconut oil. I will tell you my mom was diagnosed with moderate dementia at 63 and died from it at 68. The last seven months of her life I cared for her in the home. My brother, sister, dh and kids ALL noticed a difference in her when I started her n fish oil. I was amazed and delighted! I woild say it reversed her dementia by about two years. She was even able to hold a conversation somewhat! It was so amazing!!! I swear somethi g is going to come out about oils and dementia.

:grouphug::grouphug::grouphug:

[Denisemomof4]

My grandmother's dementia was much worse during the time she had a bladder infection. She was almost completely out of her senses until a friend finally took her to the doctor. Once the infection was gone, she returned to more normal.

 

Absolutely! UTI's put my mom in a comatose state. She was regularly hospitalized for them and sepsis. :crying:

[Denisemomof4]

For those who know someone who was denied SSI, have they reapplied? SSI usually always denies the first time (so we were told when applyong for my brother) and said they count on many people not trying again. Rainefox, hat is ridiculous the person you speak of was denied.

 

i agree with Kalanamak about the lawyer. Since you can't afford one, maybe the alzheimer assoc can help you figure out how to get approval? My gretest resources have always been people who have ravelled the path I am seeking help on.

[ocelotmom]

She has no infection in her body? Has anyone checked? I learned that infection does not present with normal symptoms in the elderly.

 

The hospital docs thought my Mom had dementia. She actually had c dif., a really bad infection that took months to clear up. Honestly, her memory/some functions never returned to fully functioning before she died, but instead of going in a nursing home as they suggested (!!), she went back home to finish her life in her own house, as she wanted. I just took over the bill paying, and some household management functions for her.

 

It's worth investigating. Lots of elderly people get UTI's with no symptoms like we would have also.

 

Yes, she needs to be thoroughly checked for infection, vitamin/mineral imbalances, and hormonal imbalances. There are a lot of fixable problems that mimic dementia.

 

Unfortunately, people do get it this young, and I encourage you to get a DPOA for health and finances NOW (and a med alert bracelet). And make plans on where she will live in the near future, and if things get bad (wandering, violence). It is easier to deal with a 90 year old with dementia than a 50 year old with dementia.

Definitely.

 

I work in a nursing home, and it causes HUGE problems when people are admitted while still competent to make their own decisions who have no POA. Then they decline, and we have serious trouble giving appropriate care because they're unwilling or unable to give consent.

[Katy]

I hadn't thought about lyme disease, but that's a possibility too.

 

It's very common for someone in a nursing home who suddenly gets worse dementia with clear scans to be given a course of broad spectrum antibiotics just to clear up any infections that go unnoticed. Ask for some immediately. If that's the problem, it will make a huge difference in 3-5 days.

 

Low vitamin D can cause dementia. Go to costco or sam's or walmart or a healthfood store and get 5,000 IU capsules of D3 (NOT plain D or D2). Give her two of them a day for three months. Get a b-complex supplement as well.

 

Try these two supplements for 90 days, and see if it makes a huge difference. If not, you can have her stop. If it does, after about 3 months she's going to need blood tests to check her level of things - and take less if her D level is getting too high.

[sassenach]

I'm assuming she has seen a good neurologist. Have they diagnosed Pick's or frontal lobe dementia? Unfortunately, people do get it this young, and I encourage you to get a DPOA for health and finances NOW (and a med alert bracelet). And make plans on where she will live in the near future, and if things get bad (wandering, violence). It is easier to deal with a 90 year old with dementia than a 50 year old with dementia.

 

:grouphug::grouphug::grouphug: This is really tough on families.

 

My grandmother's dementia was much worse during the time she had a bladder infection. She was almost completely out of her senses until a friend finally took her to the doctor. Once the infection was gone, she returned to more normal.

 

The others have given good advice. I will just add a few thoughts.

 

You can talk to the dr privately about your mother, but he cannot talk to you about her. Call him before her appts and tell him what you are concerned about. Ask him to keep your calls absolutely confidential. When you call, start by saying that you understand that he cannot share information with you, but that you want him to be aware of some things you have observed in your mother's condition. Don't ramble. Have a list of what you want him to know and speak from that list. Also try to tell him how frequently certain behaviors occur (daily, couple times a week, once or twice, etc.).

 

I have never applied for SSI. However, one thing I do know about governmental stuff is that you will likely be denied, so plan to be persistent and to re-submit and be the squeaky wheel. Also I don't see the point in waiting--it's a long process, so get started.

 

:iagree: all of the above.

 

Lessons learned from my experience with my gma. Get control of finances now. My gma made a mess of their finances when she was at this stage.

 

The doctor is at the mercy of the information he has. If it's not something he can see on exam, he's not going to be able to diagnose based on it. You must communicate with the doctor apart from her appointments. My mom eventually had to do when Strider described above. My gma was too sharp for my mom to have any input during appointments.

 

Any other stress on her health made my gma much worse. Infections, injuries (she fell quite a few times, once badly breaking her leg), viruses, ect. Every time she was sick, the dementia went through the roof.

 

IDK about SSI. I think she was already on it.

 

I'm sorry. :grouphug: It was about a 4 or 5 year downward spiral for my gma. The first few years were an up and down thing where she seemed fine some of the time, but then would get sick and disappear for awhile. My gpa didn't mention signs that things were getting worse to us (he's kind of passive/quiet like that) and so the first we saw a big shift was when she accidentally overdosed on pain medication (because she didn't remember taking it). Then all of a sudden, all h#ll broke loose. My mom looked at their finances and realized that gma had run up tons of cc bills, hadn't paid taxes on the house, had massive amounts of overdue bills. This was all very unlike gma. She was the financial guru in that family. My mom and her sister had to forcibly take over the finances and her medication. It didn't go over well.

 

I wish you the best. This is hard.

[Dobela]

I have a brother that was finally diagnosed with autism in his 30s. He applied for disability but was denied 3 times. We found a fabulous attorney to represent him because he was incapable of holding a job, needed medical care, and we couldn't support him any longer. Since she felt very strongly that he truely met the qualifications for disability with all the evidence we provided, she took the case and did not charge anything in the beginning but rather contracted for a percentage of the settlement he would get - which would be a significant amount since they would have to pay all the way back to the original application date if he won. If he lost, we agreed to pay a small amount for her time involved. With her help, he won and it was very much worth the time and effort. It still took months of hearings though. It is not an easy process.

 

Also, disability and SSI are different animals but I don't know how to explain the differences. I have a friend who has had a liver transplant and has been told to not work. She qualified for one, but not the other, simply based on her employment history and her medical history.

 

Also, I would seriously consider getting power of attorney while you can, if she is willing to give that to you or your father. My grandmother did that while she was still capable with the understanding that my mom and uncle wouldn't interfer until she needed help. It really helped open communications between my mom and doctors though that has been vital in the last several months. She has access now that she couldn't have before. My grandmother made sure that her doctors and hospital had the papework on file. When she had the episode with the UTI and was totally inconherent, my mom was able to talk to the professionals by phone and make decisions from afar. For an earlier episode, without the power of attorney, my mom was barely able to find out that my grandmother was even hospitalized (we live 5 hours away).

[cin]

The others have given good advice. I will just add a few thoughts.

 

You can talk to the dr privately about your mother, but he cannot talk to you about her. Call him before her appts and tell him what you are concerned about. Ask him to keep your calls absolutely confidential. When you call, start by saying that you understand that he cannot share information with you, but that you want him to be aware of some things you have observed in your mother's condition. Don't ramble. Have a list of what you want him to know and speak from that list. Also try to tell him how frequently certain behaviors occur (daily, couple times a week, once or twice, etc.).

 

I have never applied for SSI. However, one thing I do know about governmental stuff is that you will likely be denied, so plan to be persistent and to re-submit and be the squeaky wheel. Also I don't see the point in waiting--it's a long process, so get started.

 

You can get a release form. If your mom signs it, then the Dr can talk to you. Also, doctors with dementia patients tend to not be as strict with the HIPPA stuff. At least MILs doctors were. They flat out said it's just common sense. DH was an only child and MIL was a widow, so DH was the primary caregiver.

[LostSurprise]

Has your doctor considered having an MRI done? When my MIL was diagnosed last year they did 2 MRIs; one to get a baseline/examine brain peculiarities and the other a year later to see how fast degeneration was running.

 

I'm sorry to hear this. You or your father needs to contact your local social services and get a run down on all the things your parents have available to them.

 

*there are classes on caregiving

*respite care

*people to help get and fill out paperwork for wills, living wills, medical power of attorney, etc.

*information on services they might need in the future

 

The new thing is making it possible for people to give care in their homes for as long as necessary. Make those calls. I was shocked by all the help FIL has gotten. He has everything legal/medical/practical I could think of (and more) already done with the help of state agencies.

 

Regarding SSI, reapply if she's been turned down. Its a well known fact that they don't take almost anyone the first time. My MIL applied 3x before she was accepted.

[Hunter's Moon]

I appreciate everyone's suggestions. I will be taking to a social worker on Thursday to see what our options are in regards to SSI/other community help and speak with her doctor.