Perhaps some of you could pitch in whose spouses have FTD regarding balancing/muscle weakness. I have checked the "search" bar on discussions and haven't seen anything that addresses balancing with FTD.
My spouse has been declining pretty rapidly since our out of state move 6 months ago. What concerns me now is his instability on his feet...seems to be more of a problem in the a.m. after waking than after up for several hours. I don't attribute it to his medicines, but I am getting concerned about falling. He is not willing to use a 4 point cane, walker, or even get grab bars in the shower. The last two weeks have really been bad as he wakes for breakfast about 7 and returns back to bed and sleeps until 10-10:30. He goes to bed around 10 p.m. and sleeps well thoughout the night. This morning he got up as usual and showered and almost fell in the shower. As he was drying ogg his legs were shaking and the appeared to want to buckle under. He returned to bed and slept until 2 p.m.
Is this the later stages of FTD or what? I have talked with the doctors and when he's in their office he is pretty spry on his feet and of course he behaves well and is very cooperative to the nursing staff and doctors...one think that I am lying about his rages and outbursts. They sure know how to fool people with their coping skills!
Others probably can answer your question better then I can. However, when my dh became unsteady on his feet and of course he didn't want to use cane, walker, etc. After fighting this for a week or so...then, I told him OK if you fall I will have to call 911 and they may take you to the hospital or to a nursing home. Of course, I knew they wouldn't do that. But, I did have to call 911 one night when he fell because there is no way I could get him up and back into bed.
JudithKB, funny (NOT) how they can be so very stubborn! I think husband doesn't want a cane or a walker is out of pride and a sense of well-being. I really can't fault him for that because I would probably we the same way.
I do like your suggest about calling 911 and going to a hospital or nursing home. I will put that in my pocket for a back-up call!
Bring a shower chair in and use it yourself, let him see your using it, talk about how great it is, etc. If it works, that will keep him from falling while showering at least. shower chairs are available at any medical store
Bettyhere, that is a wonderful siggestion. Thanks so ver much. I was going to pirchase a grab bar, but your idea is more practical especially due to his rapid decline.
Lullie, as you know my DH also has FTD and until the most recent change in his meds in the am has been quite steady walking and his balance was good. I would put him in mid-late stage 6. He is otherwise very healthy and will be 63 in a few weeks.
The new am meds were to help him be more cooperative with the adls but I found that he started looking/acting like he was drugged as well as becoming unsteady on his feet and having difficulty getting up from a sitting position. So I stopped the meds but he has been slow to regain his steadiness and his muscle strength in his thighs. I am considering PT.
Since your spouse is so uncooperative I agree with Bettyhere*, start using a shower chair in the shower and see if he will use it. I have one for me and DH refuses to use it, so he needs close watching. If he falls you will most likely have to call 911 to help get him up so the fiblet attached to the 911 statement might just motivate him to start using assistance. Good luck!
My DH does not have FTD or LBD but has recently been very unsteady on his feet. I got a shower chair AND grab bars for the shower. He sits as soon as he gets in there, though I would like time to wash his butt before he does. Then he really needs the grab bars to get up again. I'm glad a previous owner of the house put a hose on the shower. I can wash him completly without getting myself wet.
MaryinPA..I noticed when the gals that came from the VA and Hospice put my dh in the shower and used the shower chair...they put a hand towel down on the chair. You might want to try that.
You ladies are precious. I knew that you would have suggestions and good ones at that. I can't tell you how much I appreciate each and everyone of you.
This message board has been a wonderful blessing to me for the last few months. I don't know how I would have managed without it! I am so happy that I discovered a place where I can get help with questions, vent, learn, vent some more and nobody critcizes me for my opinions. I only wish that although we are here....I wish we weren't. That we wouldn't have to go though what is the most diffcult diseases as a caretaker to undertake.
Oh! The grab bars with suction cups are also available at the medical supply store, so you don't have to drill into the walls. Got a cheaper one at Walmart that works just fine too.
Lulliebird, Lloyd had problems with balance and falling in the mornings. He would get up in the mornings and lose his balance and fall up to half a dozen times. First I tried just staying in bed longer with him and that worked for a while. The last thing I did was cut his sleeping pill out for as long as I could. He did very well. It seemed like it was very hard for him to shake that grogginess in the mornings. Then I started him back on a fourth of the pill...than half. It really seemed to work well for him. Grab bars, canes, and walkers were out of the question. He no longer had the where-with-all to figure out how to use them and really only had use of one hand not on his dominant side.
linda MC, don't understand why mornings are worse than later in the day other than it might have something to do with the laying in the horizontal position after so many hours and then changing to the vertical that their brains can't adjust. He refuses any handicap devices...I think it's pride...doesn't want to look older...lol. He'll walk with a golf club when walking the dog but wouldn't dream of the thought of a cane. He doesn't take any sleeping pills so I can't blame it on that.
BTW, has anyone hear of alzheimers or FTD patients taking xanax or valium....so days he's so very agaited and he really could use on. I haven't heard of it being prescribed. He takes serquel...one in the evening, but I think he's building a tolerence to it. 200 mg of zoloft...help but I think that's about the top dosage for zoloft. Behavior with this guy is a real bad issue...mean and nasty all the time.
My wife has FTD and takes Xanax at 2pm and as needed. She was on xanax at one point all day but it made her too zombie-like. So we introduced Trazadone and reduced Xanax. She will take additional xanax during the day if she is anxious or at night if she has problems sleeping. Has worked great for her and her dosage is low.
DH had 1/2 Xanax when he became agitated and it calmed him down within 15 min or so. Also left some for him at day care if needed. It wasn't every day, but when needed it was a blessing.
Paulc and Bettyhere, Thanks...I took husband to doctor today and doctor reduced his sequel by 1/2 and in 2 weeks he'll be off it. I am dreading the results because we had huge problems b-4 the sequel was introduced. So much so that I had to exit the house immediately. I do believe that if this same situation occurs I will call the police so it's documented because I shouldn't have to leave the home and spend the night elsewhere. The shrink never added anything to sub for the seroquel...no valium or xanax. He really needs something to mellow him out. Plus I just can't cope with him. Pitbull attitude and temperment...and it's not just the bark! If I could deal with his behavior prior to seroquel I reccommend the Pope announce my Saint Lulliebird. Plus, I am not even Catholic!
lulliebird, I agree with Judith-what is the reason the dr is taking him off of seroquel when your DH is still exhibiting behavioral issues? That makes no sense to me unless he is replacing the seroquel with another med. DH was prescribed Xanax in addition to the seroquel he is on for agitation but it actually made his agitation worse. Didn't work for him. Trazadone was prescribed for his sleplessness and worked only for a few weeks. When they prescribed a large dose of trazodone to induce sleep, it did the opposite-made him agitated, etc. The psych calls that a rebound effect, meaning instead of sedating them it agitates them. DH was also on.5mgs of Ativan as needed but it too was only effective for a few months and then increased his agitation. We've been thru many meds trying to control benaviors- most work only for a short time if at all. the seroquel has been a godsend and still does "the heavy lifting" meaning controls him most consistently but sometimes he needs something else. Now we're back to clonopin at bedtime and as needed. Given your spouses history with behaviors I would call and speak with the dr and ask what meds he plans to subStitute for the sreoquel (assuming he thinks that's causing the balance issues) to manage the behaviors. I know early on the drs prescribed Lexapro or Celexa in addition the other meds. Good luck. As paulc noted in a post a few months ago, sometimes a dementia persons behaviors cannot be fully controlled by pharmaceuticles. I have one of those.
Lulliebird, I truly think their bodies don't rouse out of sleep all at the same time. Like I said, Lloyd did much better without sleeping pills. He was off Aricept since 2011 and I had just gotten him off Namenda before he died. He really took very little - 4ml Keppra and 4ml Neurontin at bedtime.
JudithKb, The only reason that the "shrink" explained discontinuing seroquel was balancing issues. I reminded the doctor that 2 months prior to the seroquel we were having balancing issues and husband was hospitalized I reminded him that prior to the seroquel we had huge behavioral problems, but he still wants to cut the sequel dosage and two weeks later stop it with no replacement. I gave husband his full dosage tonight inspite of doctor's recommended new dosage ( I am afraid of behavior and what may happen)... I will cut back Monday... I am really really worried what my happen without the seroquel.
LFT, Makes no sense to me either LFT. I am so worn out from this disease...I am at the end of my rope. I really need a knot. Husband is so obsessed with sex from prostitutes ....the weekends my husbands looks forward to hearing from his son who will aid and abet his addiction. I am so lonely and his family won't even respect my wishes on this...unbelieveable. We have literally lost thousands of dollars over this...money which would/could have been used for elder care and it will never be recovered. I feel very deserted and lonely. I know that the seroquel was helping in the behavior...along with his sexual problem..and now I have to stop it because he may fall. I am so beat up and worn out over juggling my life and worrying about money spend on addictions I could throw up. I don't know it I can handle any more. Enough is enough.
LindaMC, Husband is on namenda twice daily, but what I have read on this site and medical sites namenda is not good for patients with FTD which my husband is taking. In fact, it's suppose to make the disease worse. I am frustrated...and confused. Besides being worn out...I am up to my eyeballs in this disease. I really don't know how you members can hang in there. I am so very ready to jump ship.
lulliebird, don't allow his dr to victimize you yet again. Call him, tell him you will NOT stop the seroquel until he has a replacement that will help with the aggressive behaviors and you will report the dr saying you no longer feel safe with your DH if the seroquel is stopped with no substitute. How amny mgs of seroquel is your husband on per day? I know each dementia patient is different but my DH was on up to 400mgs/day and never had balance problems. Can you find another dr to consult with and give you a second opinion-perhaps a neurologist, a geriatic psychiatrist or a geriatrician? Since Phoenix is a desireable retirement location I would think there are several drs who specialize in diseases of the "elderly".
My husband became violent after using Namenda, but I belive paulc has said his wife with FTD has done well on it. Each person is different.
I am not being mean or uncaring but I still recommend you visit a divorce Attorney and explore your options and what divorcing him would mean for you, him and the division of your assets. At least you will know the ramifications should you decide to leave or stay. Knowledge is power.
LFL, Thank you so much for your input. Because you have travelled the FTD path longer than I, I truly value your advice. Husband is seeing one psychiatrist and one psychiatrist/neurologist. It was the geriatic psychiatrist would recommends husband going off the serquel because of the balance. Husband started it about two months ago and I did notice a better behavior (50 mg. in the evening). I am going to put in a call tomorrow asking for a replacement. Also, this psychiatrist perscribed the serquel to hopefully help with the sexual issues. I don't really know if it has helped or not. Also, this week husband is talking about "running away" and hitching a ride with an out of state car! I mentioned that yesterday in the psy. office. Psy. asked husband if it was true and he admitted it. On the way home from the appointment I stopped at the grocery store and husband picked up an automobile trader to look at cars for sale! I believe he given the opportunity he will purchase one...and split. This is how strong I believe his sexual addiction is!
I agree on the divorce attorney. As far as guardianship/conservership...I am covered according to several professionals becuase of my "Powers of Attorneys". So I am breathing easier that he couldn't wipe out all our funds. Of course, not having long term health insurance could wipe us out over a period of time. We don't qualify for "Vet Benefits" even though husband was honorably discharged and serviced in war time. I find this shocking because we are not wealthy people! Yes, you are so right...."KNOWLEDGE IS POWER"
Thanks for all help.....this is a tough disease and not many people are aware of how diffcult it is to treat.
The Powers of Attorney gives you the right to sign and do whatever you feel is in the best interest of both you regarding all bank accounts, credit cards, etc. I don't understand how that would keep him from wiping out all your funds. From what my attorney told me...to get most funds in my name only and cancel his credit cards if I felt he would do something with our funds. I immediately opened an account in my name only and transferred most funds from the 2 other accounts we had into the account with only my name on it. I didn't have to worry about the credit cards because he never was out of might sight. However, I had a friend whose husband ran up a $3,000 credit card debt ordering things off the net while she was out golfing.
I certainly don't want to offend you, but I do believe you have misunderstood what the POA does. It gives YOU the right...to control anything financial not him and to take it away from him if you feel it is in your best interest including the accounts that are in his name only. But, you might want to check again with your attorney. In fact, it takes away his power over most of these things if you want to protect them. Just having the POA does nothing unless you do something...not your husband.
lulliebird, JudithKB* offers some good advice. Having a POA allows you to move funds, even those solely in his name to accounts with only your name on it to protect those assets. He is still able to access any money, credit cards, etc. with his name on it, so beware, he just might buy that car.
As you know we dealt with the hypersexuality and DH was on seroquel (much higher doses than your husband) during the entire time so in our case the seroquel did not help with that behavior. It just ran its course and sopped one day.
Lulliebird, I also want to add my strong encouragement to immediately close joint accounts and put all monies in your name only. I informed the bank of my DH disease and that is in our files there. Not sure if it will help, but my thought was that if he tried to open another account and somehow rack up charges while they have this information in their files, it may reduce my legal responsibility to pay them. Also strongly recommended is to immediately take all credit cards away except one - not connected to bank accounts. This can be done when he is in the shower or asleep. You can fax a copy of the POA to the cr card company. They will allow you to reduce the credit limit on that one card to just a couple hundred dollars.
One other note: POAs can be changed at any time. I've heard of instances where children or other people take the DH out for the day, right to an attorney's office, and change the POA to their names. At that point they can empty your accounts and while you are responsible for debts because you are married, you will have lost all financial control. You will want to have a letter from his doctor (dated) stating that he is not capable of making financial decisions. Even if you are contemplating leaving, you need protection until then.
I remember how scary it is to take the steps to do these things, but it is critical for your protection. And, by the way, you do not need to tell him what you have done either. Fiblets work well here, if he questions something. Good luck and ((hugs)).
My attorney never mentioned anything about needing letters from the doctors. I never had any letters I just opened a new account and placed most of our funds in the account with my name on it.
Yes...Fiona is so right...the POA can be changed so quickly it can make your head spin. If someone tells his family how easy that is to do you could be looking at the money being transfer into their names. There was another person on here a few years ago and the step kids did just that. They took the father to the bank and wiped out the accounts. I can't remember who that was. Please don't wait. This is really important. You need to remember you are the well one (the adult) in this situation and you are protecting family funds that might be needed in the future for the care of your husband.
My recommendation to get a (dated) letter from his doctor was to protect you in the event the POA got changed to someone other than you. You could then have your attorney invalidate the new POA because your DH is not capable of making those decisions anymore.
I am referring to durable power of attorney which has an attached doctor's letter stating he's not capable to make health care or financial decisions. The financial institute (a large investment firm) as sent me all the paper work removing spouse from making withdrawls, transfers, ect. I will continue him to have a credit card in his name (limiting the amount) so should be decide to "rabbit" there would be a paper trail.
I did have a family member change our POA. They took him and I did not know it. His mother, sister, BIL, and aunt. They all started right after we had them done. We have been married 28 1/2 years. I had a breakdown when I found out because it also revoked my HCD. We had it change back immediately. If anyone does anything again we will be in court. I will then get guardianship. This was 2 years ago. My SIL and BIL appoligized but not MIL. I did not talk to thm go a year and still tell them very little. Anyway. Protect every thing you never know. My DH is going out of town this week will change accounts. I knew I should just put it off put will now. Thanks for making me realize I am putting things off. I have blended families and really need to be more careful.
jackiem29, I am sorry to hear that you had this problem. There is a difference between power of attorney and durable power of attorney. What I am referring to is a DURABLE POA which can not be revoked when someone becomes incapiated.
Having durable power of attorney, which most of us on here had or have doesn't protect you if someone takes your husband to a bank and withdraws the money or has him write a check to them withdrawing the funds. The funds would then be gone and it probably would cost more in attorney fees trying to recover the funds then the withdrawals made by members of his family. The ONLY way you can be protected is by placing them in an account in your name...of course the choice is yours. For most of us that risk was just too great to not protect the funds by transferring them in our names only...after all it is for his welfare and care in the future.
Also, there can be more then one person having power of attorney. That is why my dh's children tried to do. They wanted to come to Ca. and take him back to Illinois and get him to sign them on as having power of attorney. I found out about their plan before it happened. That is when we immediately went to a Elder Attorney had trust drawn and I transferred most of our funds into my name only.
JudithKB, thanks for your advice. Sounds like your in-laws are related to my in-laws. It's terrible how they tried to undermind you, but glad you found out about their plan before they did some serious damage to your bank accounts. It amazes me how disappointing family can during critical times like these.
Judith, I'm the one whose stepkids took their father to the bank and cleaned out his accounts and left me with $31,000.00 worth of bills I was responsible for: this was even though I had had P.O.A. for two years. Here in Canada, you need two doctors to declare a person mentally incapable of handling their financial affairs (which I did after the fact) and obtained committeeship (guardianship). I should have moved all his money into my own accounts as soon as I had the diagnosis of Alzheimer's ( as has already been suggested in this thread). The love of money truly is the root of all evil. I've been out of town for a few days and am just now catching up on posting.
We never tried Namenda, was adviced against it since L reacted so poorly to the Excelon path. Namenda is not recommended for FTD, but since 25% of FTD dx's end up being rare forms of Alz it is worth a try.
I know people who have had step-kids have their husband sign POA while they happened to take him out for lunch. This was despite directions to the AL facility that husband was not to leave or be taken out without the wive's permission. It took $5,000 in legal fees to have the step kid's POA ruled null (husband had no idea what he was signing).
Guardianship or custodianship, which are different, varies by country and state in the US. In states where there is a choice between the two there can be big differences in reporting requirements and costs.
Yes, Mary75 the LOVE of money is the root of all evil. I am so sorry that your step-kids undermined you. They will have to live with this the rest of their lives.
PaulC...I was recently made aware the namenda is not recommended for FTD. They only reason I think psy. is giving it to him is because he has a mild/moderate alzheimers in additon to FTD. Yes, I believe there are lots of step-kids out their working against the caretaker of their loved one. It is hard to imagine that someone could have little to no conscience to do this! Lack of family support is a huge disappointment for me too. I just don't get it...never will get it...and don't want to get it. Shame on them
I have step kids and one is a sweetheart the other is a pain in the butt!! The pain has lots of money and can only talk to his Dad about business and high priced cars and such. Last week my husband, after pain in the butt left, said "I wish he would stay way as he can't talk to me on my level" he thinks he knows it all but he knows nothing about his Dad's needs. The other one really try's but he is a busy man, as his wife says, so we don't see him much. He does call, but again hubby has nothing in common to talk about. Hubby does not like to talk on the phone anymore. I guess it takes to much effort. He does have some balance issues but now he is not allowed to use stair, but he does anyway, how can I stop him! He is really afraid he is loosing control and that everything he likes to do us being taken away. I can't even imagine how he must feel and it is heart breaking to watch. Strange thing is that he was always very good at math and he is still able to do our finances and even our taxes. The neuro- phycologist told me it is because that part of the brain has not been affected yet. I think it will be a bad time when he losses that ability. Today I asked him to bring the Philadelphia cream cheese from the refrigerator but he was unable to find it. No idea what it looked like. Just little things but they are so big!
Jazzy, my DH has FTD too and was able to do complicated and simple math problems until last year. Even though he could still do them (and I would put him at mid stage 6 then) I still didn't trust him with the finances. Couldn't afford to take the chance.
Jazzy, My husband also has FTD. He was diagnosed 4 1/2 years ago, right before his 59th birthday. He has never realized that he has a disease. In the beginning he would tell everyone his brain was shrinking... Now he speaks very little and then only a word or two. We can go days without him speaking a word. But, for someone who is not verbal, he is quite loud when it comes to laughing, screaming and pounding. I was lucky that I have always handled our finances, so I didn't have too many worries with that.
He has no balance or muscle issues as of now. The last MRI showed that the portion of the brain that relates to balance was not affected for him. But I do know that muscle problems can be common with people who have FTD.
My FTD+ is loosing body mass. Yours is quiet mine talks constantly about everything he is doing. He talks so he can remember what to do. Some days he is very quiet other days not so much. He has bvFTD and I understand it is different from the full FTD. The AD is now taking over and he will forget what he is upset about before he explodes now. This has calmed things down quite a bit around our house. He sometimes will get very upset if he wants to do something and he can't manage it or it is something he is not allowed to do because he has no sense of danger. He has left the gas stove on for two hours twice now so If he is near the range I am there as well. He has trouble putting a project together now so he just doesn't even try anymore. He is not very strong anymore and tires easily and then needs to rest. He doesn't have much facial expression anymore , like a mask. We are going to be fine. He went and made all his arrangements for placement just in case I should get sick and not be able to care for him. I'm told that this is not the usual thing for them to do. I was very proud of him. He is still trying to care for me. He says he still loves me but it is not the same kind of love as before. This is now eight years of gradual progression. His last MRI showed that he has had numerous small strokes so that could come into the picture if there is a big one. This is scary stuff we live with but we will survive.
deb112958, your husband sounds so much like mine... (no talking, no showering, and then loud when he wants attention or doesn't like things) Is your husband having diffculties with balance and walking? Somedays he walks like a drunk and others normal. I really can't figure out why one day he staggers and another is ready to fall down. Makes no sense to me.
My husband as no problems with balance or walking. He has started to walk much more slowly but can still move quite quickly when he wants to. Sorry I'm no help.
deb112958, Thanks for your input. I spoke with husband's neuro man and he thinks they need to do another MRI and start PT and monitor his blood pressure in the mornings because the serquel may be dropping the pressure. Today he's walking perfecting normal, but a little more slowly. So many puzzles with this disease
Cerebral Amyloid Angiopathy or CAA can cause the symptoms you describe, balance issues and fatigue. My wife, age 58 was dx 3 years ago after a brain biopsy on a lesion. CAA also is a cause dementia, and is one cause of Alzheimers. It is rarely dx as it requires a brain biopsy to get a dx. There is no treatment anyway so I guess the cause of the dementia/alzheimers doesn't really matter. Treatment is for the symptoms just like AD. My wife also sleeps to about 10am gets up, needs someone to balance her to walk, stays up to about 3 pm, then takes a 3 hour nap. She too refuses to use a walker, but finally got her to use a shower chair.
JerryS, You accurately descripted my husband. His balance and agility in the past 4 months has declined abruptly. His neuro./phys doctor ordered a CAT scan to compare with the one taken in October 2012. I know this disease lingers for years, but at this rate I would be very surprised if he lasts another year. I believe he is also suffering with a failure to thrive. Is it normal to decline so quickly?
any sudden decline of course should be checked out imediatlely by a provider of course. My wifes balance issues come and go, although her balance hasn't been good for quite awhile. In my wife's case she had a sudden decline in her mental state to that of a child about 2 years ago and right now it appears to be staying about the same. But everyday I wonder what kind of mental and physical state she'll be in. So just because your spouse may be declining rapidly there is a chance that they will hit a plateau and stay there, at least for a while. Seems like they go down in a stairstep pattern instead of a gradual decent.
I appreciate your input. It sounds my spouse's health issues are closely related to your wifes. I am thinking that he's on the decline and then will level...decline and level. I have never been told how long in years, but only that he's terminal. I really don't believe that the doctors can safety predict as with other diseases as cancer. It's so strange now each patient varies, but in many ways as much in common. IE, lacking of concern for grooming, cravings for sweets ect.
Today husband did have a CAT scan and I will know more tomorrow. Hopefully ( I was told) that then the neuro doctor can have a better grip on medications to prescribe for aggitation. He's off the charts at times with this. It just comes out of the blue...very scary disease this FTD is. Every night sleeping with the bedroom door locked, cell phone on night stand, and pepper spray in reach...what a way to live.