Dear Rose, I am so very sorry you're going through this nightmare...trust me I remember it all too clearly and at some level I fear it might return. As I've, my DH is always a handful and definitely not easy to care for.
It might be worth another try to see if it might work this time. Have you asked the doctor for liquid forms of the prescribed meds? Maybe you could put those into a favorite beverage or food? If these efforts fail then perhaps it is time for an inpatient med adjustment at a geri-psych unit.
a rich pitcher of cherry or grape flavored koolaide using a bit less water makes for an sugary enticing drink to slip the meds in. we know AD loves sugar. rose I agree with LFL, what didn't work before may work at another time in the future when they tend to lose more focus. I don't think many of us would make it thru this disease without the help and control of the meds. divvi
Dear LFL and DIVVI, . The only thing Charles drinks is bottled green tea,and those are sealed when he opens them. I took him to his regular doctors office,and to see a Neurologist yesterday.He hadn't seen a neurologist in close to three years,before his diagnosis of ftd.This was one of his hostile days,and the lady Neurologist wasn't pleased with his attitude at all.This was the first time she had ever seen him,and she said he needed to be committed,and wanted to know why he wasn't on medication,and added that she thought he was suicidal,and severally depressed.I told her he had been severely depressed for several years.She scheduled an appointment for an EEG,and another appointment three weeks after that one.She must think he needs urgent attention,because he's a new patient,and I was told she's usually booked up solid. . Have any of you heard of a EEG? "HUGS" ROSE
An EEG never showed anything unusual for my wife. I don't think FTD will show up in a EEG but it could reveal if the cause of behavior is another neurological problem.
Electroencephalography (EEG) is the recording of electrical activity along the scalp. EEG measures voltage fluctuations resulting from ionic current flows within the neurons of the brain.[1] In clinical contexts, EEG refers to the recording of the brain's spontaneous electrical activity over a short period of time, usually 20–40 minutes, as recorded from multiple electrodes placed on the scalp. Diagnostic applications generally focus on the spectral content of EEG, that is, the type of neural oscillations that can be observed in EEG signals. In neurology, the main diagnostic application of EEG is in the case of epilepsy, as epileptic activity can create clear abnormalities on a standard EEG study.[2] A secondary clinical use of EEG is in the diagnosis of coma, encephalopathies, and brain death. A third clinical use of EEG is for studies of sleep and sleep disorders where recordings are typically done for one full night, sometimes more. EEG used to be a first-line method for the diagnosis of tumors, stroke and other focal brain disorders,[3] but this use has decreased with the advent of anatomical imaging techniques with high (<1 mm) spatial resolution such as MRI and CT. Despite limited spatial resolution, EEG continues to be a valuable tool for research and diagnosis, especially when millisecond-range temporal resolution (not possible with CT or MRI) is required.
Rose, the neurologist my husband saw also wanted him to have an EEG, but that was because he's had occasional seizures during his hospital stay last year. No one wants to believe me that the seizures are related to the strong medications they give him during his hospital stays. They wanted to rule out a brain disorder other than FTD. The dr also told me that depending on which part of DH's brain is dying from the FTD, that could also be causing the seizures.
He never had it done because there's no way he would have tolerated it.
LFL I tend to agree that some of these meds can ignite or worsen the tendency for seizures and or myoclonus/jerksing. my DH doesn't take anything other than Ativan on occasion as needed. and he still has the seizure activities esp with the full moons and without even the ativan. so I lean more toward the activities within the brain and what part is being affected. but what do I know. nothing. its all such a mystery isnt it. EEG would be to rule out other things that could be happening. the nasty behaviors are typical of FTD as many here attest Rose. if my DH wouldn't take meds to help this, I would be seriously considering placement as well. I would never have gotten this far without pharmaceutical interventions. at least your neuro got to see him in action. divvi
Has anyone got a spouse with peripheral vascular disease? . My husband has recently been diagnosed with this,and has been going to wound care at the local hospital,for a foot ulcer that won't heal.The wound care specialist did an ultrasound on both of his legs,and determined that he needs to see a vascular surgeon.He won't agree to the appointment,and that is dangerous due to the fact that no pulse can be found at his ankles.They tell me he has very little blood flow in his feet and legs,but can't say how long he's been living with this condition,or how long it would take for something really serious to happen,if he just ignores it.Rose
Rose, yes my DH has been diagnosed with PAD. It goes with the territory. I do not push medical exams anymore. They are too stress for both of us. It is what it is. There is no cure for the dementia. Alot of new docs will saddle you with many many tests and exams and I feel that they are just milking the insurance company. Nothing ever comes of the tests b/c he is not going to follow their directions for follow up care. I am so sorry that your husband has degressed to the point he is at. If a doctor wants him to be in a facility, I think that I would have to pursue that before he hurts you or himself.
Thank you,Shellseeker50 . I appreciate your comments,I didn't realize PAD was inevitable with the progression of the bvftd. . I think your right,I'll let Charles decide what test,procedures,and Doctors he wants to endure. . How long has it been since your husband was diagnosed with PAD?Rose
HI SHELLSEEKER50,AND JAZZY: . JAZZY,PAD is peripheral artery disease,or hardening of the arteries.Charles has severe peripheral artery disease,in his feet and legs.The blockages are so bad,that a diabetic ulcer on his foot won't heal,even with two months of antibiotics,both oral and topical,and a team of wound care specialist,in home nurses twice a week,and Primary Doctor office visits 6 times in the last two months.The ultrasound on his legs reviled several blockages throughout his legs,and Charles doesn't have any pulse at his ankles. . SHELLSEEKER50,The reason I ask you how long it had been since your husbands diagnosis,was because I honesty don't know how long Charles can live with these blockages,until he has a stroke,heart attack,kidney or other organ failure,or even more brain damage.He is still refusing to see the Vascular surgeon he was referred to.Rose
Rose, sorry to be so blunt, but hardening of the arteries is hardening of ALL arteries. This is the vessels in the brain, heart, lungs, kidneys and extremities. Some untrained or poorly trained health pros have trouble locating the pulse in the ankles b/c the flow is so slow.,this does not mean that they do not have blood return in that leg. They have instruments that they use to locate and measure the pulse. Not to the blunt but the death will occur from either the dementia(brain), or heart not receiving the needed blood flow. There is probably not alot that the surgeon would do? and certainly not if your DH does not want it. Does he have a living will or directive?
Shellseeker, my husband has had bvftd for at least 6 years (dx in 2008) and I've never been advised that it would cause PAD. In fact my husband has an annual physical and his circulation, vascular health is good. Good pulse in the legs/ankle, good blood flow, good eeg and good ultrasound of carotid arteries.
LFL good news. that is one symptom you do not have to worry about. The first time I was told that he had it was after he had taken a hard fall, and split his head open. They showed me hardening in the brain (calcification) on the cat scan pictures. They then tested his legs and showed me the meters. We have been keeping an eye on it since. He takes thinners when he can and plavix. However all the other problems(symptoms) are the ones we deal with daily. some doctors panic when they cannot find the periferal pulse in his ankles, others just use the meter to measure the return for that visit. It is really moot at this point and time for us.
Dear SHELLSEEKER50: . NO Charles doesn't have a living will,or advance directive.The wound care doctor thinks the vascular surgeon would implant something in the vessels,to open the veins.Charles isn't willing to cooperate,so it's doubtful anything will be done. . Our daughter-in-law is urging me to get custody of him,but I don't see the point.Rose
THANKYOU,SHELLSEEKER50: . Every one of us that takes care of someone with dementia of any kind,has to be strong. . You are remarkable,and knowledgeable about everything your dealing with.We will be thinking of you,and our prayers will be with you.Rose
This has been good info for me. DH has Vascular and very low blood pressure. Lately he has been having problems that cause him breathing problems when he walks to fast or gets over anxious about things like visitors and going out. He will not be able to get his breath and grabs at his throat and says he also feels pressure in his chest. This lasts about a minute then he is fine.They thought it maybe his heart but now they are looking at the anxiety possibility. I have never heard of PAD before but I will check it out with the Dr. because of the Vascular and low BP BP is often 89/60 but usually around 101/70. Canadian readings, don't know American comparison.
Dear Jazzy: . Those episodes,your husband is having sound very frightening to me.I sure hope you find the answers you need. . My thoughts and prayers are with you.Rose
Rose, it sounds like you are dealing with doctors who are still of the mindset that Everything MUST be done if it CAN be done. As well as with an uncooperative husband. You really should get a DPOA, you both Should have one, living will etc etc. please do not think that he can decide rationally what he needs. Most of us have been through the stage of having to use 'therapeutic fiblets' to get things done that need to be done, like putting meds in his green tea and screwing the top back on, or whatever.
Dear Briegull* . Believe me,if I put anything in his green tea,he would know.Charles would notice if the seal was broken,and would refuse to drink it.He does take all of his meds for diabetes,blood pressure,cholesterol,and etc.His multitude of doctors,nurses,specialists try from time to time,to prescribe mood stabilizers,anti depressants,etc and he refuses them all,at the various doctors offices.I have been married to this man for 43 years,and know better than anyone,how much he has changed over the past 9 years.Charles definitely isn't capable of making any rational decisions at this point in his illness.The doctors are still letting him decide for himself.Rose .
. Hello,this is Rose asking if anyone is familiar with the drug Sensipar?Charles was prescribed Sensipar yesterday,by his nephrologist,to take the place of Zemplar. . I've made an appointment with a vascular surgeon, for more extensive test on Charles feet and legs.Wound care,in home nurses,and his primary care doctor,all pressed me to do this.They all think he'll end up with a stroke,or heart attack if he doesn't have leg surgery,to open blood flow to the lower extremities. . Charles stands at 22% kidney function,as of his most recent blood workup.His nephrologist feels that any surgery might throw Charles into Kidney failure.His nephrologist forbids any dies to be used in any of their test,or surgical procedures. . The wound care specialist told me it's dangerous for Charles either way.If he has the surgery to open up his blood flow,to his feet and legs,he runs the risk of his Kidneys shutting down,and if he doesn't have the Surgery,he'll probably eventually have a Heart attack,or Stroke.Thanks for listening,Rose.
Rose, you have some difficult decisions to make. if it were me, I think I would opt for what is easiest on my DH and not the outcome. with a difficult outcome either way their quality of life vs quantity may be in question. I wish you the best on making these hard decisions. you may could ask for a referral for hospice from the dr as well to help in his care.
Rose, It is possible that the doctors and nurses who have pressed you to get a vascular surgeon's opinion are doing so because they want you to have a clearer understanding of what they have been telling you. Sometimes a new person can explain a complicated medical issue better. The wound care specialist is being truthful with you. He has seen lots of patients with your husband's diabetes/vascular/kidney problems and that gives him perspective and understanding of this very complicated, multi-system disease process. divvi has given you good advice from this lay board. Consider what the advantages would be from putting your husband through a complex and potentially dangerous surgical procedure. That is what your husband's health care professionals are trying to help you decide.
Hello,this is Rose with a follow up. . We went to the Vascular Surgeon,to please all of the medical professionals,that have been helping Charles. . More ultrasounds,and other tests were done.We found out the problem is Venus,more than vascular,and there's no real threat of a heart attack,or stroke,and surgery isn't needed right now.We were urged to make an appointment at a vein center inTulsa,so the vascular surgeon can check out all the veins,in the feet and legs,to see what needs to be done next.I have made that appointment,but as usual Charles hasn't made up his mind to go.The foot care specialist,in home nurses,and primary doctor have until march 31st,to talk him into going.The foot ulcer isn't healed yet,even with constant care and antibiotics,over these past three months.Rose