glad you had a good time Amber. May it be the start of more to come.
just a couple more days at 90+ then the fall cool down to the 80s. If I have not heard on the duplex by the end of the month, which is fast approaching, the winterizing starts in.
I just heard that one of the guys had a fall. The guys are a group of eight (now six) who played basketball together for years when we were in our twenties and thirties.
The thing is he fell just four feet onto a slate floor and yet fractured eight ribs with two displaced and internal bleeding. It's going to be two months in total for him to recover and he is on heavy meds because of a lot of pain.
When we were twenty five we would have bounced from a four foot fall and had a bruise. What do the bones turn into? Graham crackers? I have a call in to a friend who is my age and plays in highly competitive volleyball tournaments. He dives onto the floor all the time.
I still like George Carlin's idea of going through time backwards. You start in a retirement home until you're too healthy and leave to go to work. On the first day you get a gold watch and know everything then as the years pass and you get younger you don't know anything so you have to go to school where you get to be a teenager and then an adolescent and as a little kid you get to play all day until it's back into mother's womb for a peaceful nine months all expenses paid until finally you end up as an orgasm.
I haven't posted much this month. I've been doing a lot of soul searching, finding closure in some areas that deal with the past. But the future scares me, and this has been a particularly emotional week. I started to write about it all last night, but unfortunately my thoughts were still all over the map, and I couldn't write everything down fast enough and the post disappeared. So I am posting the "Coles Notes" version.
We had a visit from the occupational therapist this week. I have been concerned about my DH going down to the basement, since he has become quite wobbly. I know he is only trying to help me by bringing things we need upstairs from the pantry downstairs, but it is a concern. Also, his shoes have a great deal of grip and since he slides his feet he is frequently tripping over his own feet, even on level ground.
The occupational therapist was a real joy, and I mean that. But one thing about her visit really resonated with me and I have been thinking about it, and its ramifications, and weeping about it every since. She asked my DH what (not how) he felt about his dementia. His response was that he is continually biting his tongue to control his frustration. His frustration stems from two things - he gets frustrated by not being able to do things he still thinks he should be able to do, and he gets frustrated by people offering to help him, when he doesn't feel he needs help in accomplishing the tasks they are offering to help with.
Now my DH has really started a downward slide in the last month or two, and I know that we are getting closer and closer to placement. I think as long as he has that filter that is controlling his reaction to frustration we will be okay with him at home. In that regard he continues to be the mild mannered gentleman that I fell in love with many years ago. But I fear that this filter is getting thinner and thinner. Yesterday he snapped at one of the staff members at the day center, and he has occasionally given a less than pleasant response to me when I have offered to help him do something he has been struggling with.
So I think I have found my new line in the sand - aggression. And its going to rear its ugly head sooner rather than later. Time to start looking at getting on the list for placement.
On Joan's blog thread, Alim wondered what dementia patients think about all the medication that keeps them from being aggressive, and hopes they are finding peace. From what my DH said about his frustrations, I fear it is the opposite - the over medication just makes them that much more frustrated, because they have lost the only way they could communicate. IMHO the medication is for the staff and the care givers, not the patient.
bqd - I get frustrated at my husband because he won't do the things he still can. I blow up at him saying instead of getting up and doing what you can (like vacuum, wash dishes, etc. he just sits there in his chair. His response is nothing.
bdq, I believe the medication is primarily for the caregiver, the staff AND the person with dementia, even tho it makes them frustrated and confused. My husband has been aggressive and violent for many of the 6 years (and before) he was diagnosed. Before he was diagnosed and not on meds, I feared for my life (no exaggeration), I was choked within an inch of my life, he threw a 32 lb vacuum at me, knocked me down (thank god my leg didn't break) and left me injured on the floor for 4 or more hours, gave me karate chops between my shoulder blades as hard as he could when I turned to walk away and twisted my leg so hard I thought it would break at the ankle, knee and hip. I was advised by all professionals- elder law attorneys, nurses, psychiatrists, geriatric care managers, you name it to put him in an ALF or other facility because he was a danger to my safety. No facility wanted him because of his violence and aggression. The ONE place that would accept him made it conditional that he could not be violent towards staff and other residents. He "eloped" 2 weeks later and was institutionalized in a state psychiatric facility. Even there he threated staff and other patients delaying his 2 week release to 3 months.
I fought to have him come home because I knew he would be kicked out of any facility he was put in because of his aggression and the liability. The ONLY place that would accept him was a psychiatric facility that housed the most aggressive patients (at $150k/year) and the criminally insane. It would have led to an even earlier death, I am 100% sure.
My husband has been home now for 6 years and we have continually had to adjust the meds....but without them he would have injured or worse yet killed someone either at a facility or me at home. I am sure it contributes to his confusion and loss of some functions, like speech, but he still has a good quality of life and as he progresses I am reducing the meds. Absolutely EVERY professional has told me if he hadn't been cared for at home he would be dead by now.
Do I wish I could manage his dementia without the meds? You bet I do, but I know that's not possible. He has FTD and is always a risk for violence and aggression. Unfortunately when you have a dementia patient who is aggressive, the caregiver has to make very tough decisions. I chose to have him on meds to control the aggression/violence...it was my trade off to keep him alive, functional, at home and not institutionalized with the criminally insane. I am sure he has had a better quality of life here with me than in that psychiatric institution. Without them I am sure he would either be in jail, or dead.
LFL, Thank you for posting your story. I am astonished that you would have to go through this. And I'm also angry that there is so little help for these patients and their families. (An institution for the criminally insane!!!) It seems like our society has just abandoned people with dementia, especially if they have behaviors that are difficult to deal with.
Charlotte, I hear you. I get the same non response when I suggest to my dH that he do something to help. Its like talking to a brick wall at times -he is not the only one biting his tongue in frustration!
LFL, I am sorry if have upset you. I have been reading your story for some time, and I don't think that I would ever be able to do what you have had to do.
I do understand your plight, and I certainly did not mean to imply that all medication is bad. Perhaps what I should have said about the medication has more to do with its level, than whether it is used at all. My DH is also on meds, as he sundowns quite badly and I need to settle him down or I could never get supper on the table or get any sleep at night.
And I also understand that it can take a great deal of time and effort to get the dosage and cocktail of medications right.
What I don't want to see happen is to have my DH turned into a zombie on too much medication, JUST TO MAKE IT EASIER FOR THE STAFF TO HANDLE HIM. I have seen this happen too often with my father. In which case, I would argue that my father does not have any quality of life. Because I know that given the right dosages, he is still functioning and has a quality of life, as he was when I visited him early this month. The same could not be said when I visited him at the end of June, just before a holiday weekend when I suspect that the facility was short staffed.
But from now on, so as not to offend anyone who might feel differently than I do, or be in a different stage of the disease than I am and thus have more or less experience, I will just keep my opinions to myself.
bqd, Please do not keep your opinions to yourself. The freedom to express our opinions is one of the things that makes this site so valuable. Even though I do not agree with all the opinions I read here, I love reading them because they make me re-examine my own notions.
Before I came on this site, my opinion of psychotropic medication was based a sample of 1 -- a frail, elderly friend who was placed in a NH and put on Seroquel for agitation. She became a zombie, unable to eat, speak, or even sit up in a chair, and was diagnosed with severe dementia and failure to thrive. After a legal intervention, she was found to be clinically malnourished and deyhydrated and was taken off Seroquel. She soon "woke up" and her diagnosis was changed to moderate dementia. She got a dog and moved to her own apartment with a hired caregiver. So Seroquel almost killed her. But now that I read the stories of others, I realize that Seroquel and similar drugs do have their place. But I am still very wary of them and suspicious of the way they are used in LTC institutions. BTW, so is the state I live in, for one of the factors its regulators use to rate NHs is the extent to which they use psychotropic drugs.
Charlotte, Contrary to your experience, my husband was eager to help. He did everything wrong. One day I came home to find him emptying out all the kitchen cupboards. Plates, glassware, mugs, etc. were loaded in a plastic laundry basket and stacked on the counter. It turned out that he decided to empty the dishwasher and he just kept going. When I walked in, he proudly told me, "I'm almost done." Since I knew that one of the hardest things for people with dementia was constantly being told they are doing things wrong, what could I do but thank him for all his hard work?
bdq, Don't assume that your husband is going to get aggressive. Many people do not.
Dear bdq, please DO NOT stop posting and sharing your opinions and viewpoints - they are as important as anyone's, including mine. I've missed your comments and input as a fellow FTD caregiver and member of this forum. I continue to learn daily from all here as they share their struggles, questions, concerns or just venting. Each of us is invaluable in what we say and contribute.
Your comments in no way upset me...actually I agree with you, that many dementia patients are given way too many meds (even the complacent ones) for the benefit of the staff, not the patient. And yes, Medicare is trying to limit/reduce the use of the anti-psychotic meds and abuse in LTC facilities, which in the larger picture is a good thing. Unfortunately, there's no one size that fits all and that's where my concern lies. Rather than deploy redirection tactics or spend a little more time trying to understand why the patient is exhibiting difficult behaviors, facilities frequently go to the meds, even when they are not necessary or are only needed temporarily. Many reasons for that, primarily they are severely understaffed, are not getting paid enough from Medicaid and some are just downright money hungry at all costs. Conversely Medicare/Medicaid is forcing LTC facilities to reduce the anti-psychotic meds in order to continue to receive funding, even with those patients who clearly require the meds to control their aggressive behaviors. The result is some people who should never have been on the meds improve and benefit and those who need them are not receiving them and are at risk of being forced out of the LTC facility.
That's why we as caregivers and family members must always be vigilant in advocating for our LO's. Only WE know what's right for them. I am fortunate that I have been able to keep my husband at home, be in total control of his care and fight the battles which need fighting. It hasn't been easy by any stretch of the imagination but for us there was really no other acceptable alternative.
Right now the tough, confident, self reliant shell that I normally project to the world is cracked and leaking like a sieve. And I find I am reacting, and overreacting, to every slight or criticism, real or perceived.
I expect everyone on this site has felt this way at one time or another, and I will get over it - I don't want the people around me to walk on egg shells just to keep me from bursting out into tears at the slightest provocation.
Myrtle I have reason to suspect, because of medical issues in the long past, that my DH will become more aggressive, although not necessarily violent.
Tonight I am more worried about his balance -while trying to clean up a mess he made scraping food scraps from dishes and into the garbage, he fell onto the floor. Luckily I am a tough old bird, and I was able to help him get to his feet again, and he did not injure himself. Yesterday he fell getting out of bed.
This is another worry that keeps me awake at nights because one of these days he is going to fall and seriously hurt himself.
bdq, I too have been following your story for a while. I know you are strong , capable and a strong advocate and great caregiver for your husband. Cracks in the armor? Yup. Join the rest of us. But tonight, let me tell you I admire you and I understand your fears and concerns as I have lived them. All you can do is your best, and I know right now you are afraid that no matter how diligent you are he is a fall risk. And you're scared that he will hurt himself like my husband did and then what? Positive thoughts...and I will include you and your husband in my prayers tonight. You can only do your best and I know you're doing that.
BIG, BIG HUGS. I will always be here if you and others need me.
bdq, Please keep posting. In following your role as a caregiver I know that you are going through the agonizing mental depths of trying to survive this. I value and understand how you feel. I have also been talking to the brick wall (which includes the NH Staff) for years and it is totally frustrating. I admire you for keeping your DH at home all this time. My DH was officially diagnosed in 2008 but it had been going on for about four years before that so this past ten years has been h**l. Since LTC placement in 2011 I have fought an ongoing battle with the zombie drugs. He has never been aggressive but he has been agitated when showered or changed. I believe anyone (dementia or not) would go on the defense if three people approached and stared rapidly snatching at there clothes to undress them. I realize some drugs are necessary but too many are given to put them in the zombie zone for the staffs benefit and I will always believe that. I learn from all the posts and after 3 and half years I am still feeling guilty in wondering if I placed him too soon. Reading the posts on this site helps lessen the guilt a tiny bit. So please keep posting and let your true feelings out. I am not here to judge but to learn and sympathize with all. You are a special lady, bdq, so I'm sending you a big ((HUG)) that you so deserve.
I placed my DH 18 mo.ago.He was just getting too much to keep him home,so much aggression and verbal outbursts. At the NH he was very combative and such foul language. I guess I got lucky, he is now so happy. After a few months the Dr. had them wean him frim the Seoquel, then Zoloft and then the Aricept and lastly Namenda.He went from fighting getting dressed and showered to very calm and agreeable. I really have to wonder if some of thwere drugs given to calm them actually do the opposite after long term use.The aides all love to care for him,and he always greets me with a big smile and a hug.Sometimes I wonder how some of you can carry on thru all you are going thru.I pray for better times for every one going thru this horrible disease.
yhouniey, I agree that some of the meds work exactly the opposite as they're intended - more agitation/aggression, not less. This has been true in our situation. My husband became physically violent and paranoid while on the Namenda (Namenda apparently does that to FTD patients, although I know it has worked for some), had seizures on high doses of Seroquel, and was pulling out IVs and trying to climb out of the hospital bed on high doses of Ativan and Haldol (horrible drug, 1st generation antipsychotic).
I have been slowly weaning my husband off his meds to much lower doses because I believe they are making him less coherent and interfering with his speech and cognition.
I lost another friend last week. We weren't really all that close - we used to work together, although 3,000 miles apart, and saw each other three or four times a year. But we did share one thing. She was also a care giver for her husband who has Alzheimer's, and only placed him about a year ago.
It got me thinking about whether anyone has ever looked at the statistics related to whether care givers are more likely to pass away before their AD spouses, or is it the other way around? Or is there no difference when compared to the "normal" population? In my circle, the ratio is not in favor of caregivers. If I include my mother in the statistics, then I have known 3 caregivers who died before their spouses, and only one who has lived longer than her spouse. She had her husband placed early on in the journey. Hmmm, food for thought.
bdq, I am so sorry about your friend. I find it very sad to hear about the untimely deaths of people I used to work with, for it kind of closes a door to the past. And the last years could not have been much fun for your friend if she spent them in a caregiving role.
Charlotte, I just did a search as well, and came up with this: http://www.ncbi.nlm.nih.gov/pubmed/10605972
According to this study, caregivers are 63 % more likely to die prematurely than non care givers. The study only looked at caregivers over the age of 65 - I don't fall into that category (yet). I think you and I have the same goal - not to be the other victim of this horrible disease.
Myrtle, you are right, it does close a door on the past when we hear of the untimely deaths of people we once worked with. I retired early (age 53) and I have kept in touch with a select few of my former co workers, so I have been able to be kept informed of how the people I used to work with are doing. We have become the dinosaurs of the world and most of the current work force probably don't even know we ever existed, so its up to us to keep our legacies alive.
Bummer! I was going to take early SS and start saving it. Found out today if I do it will put us over the maximum allowed for me to qualify for Medicaid. It would not bother me as much (since I went 10 years before without it) but with the cancer diagnosis last May and now the need for follow-up, I can't loose it. I still need to investigate it more but I can't afford to pay a few hundred a month for insurance which would be most of my SS. Oh well!!
Double bummer, Charlotte, These financial hurdles we have to go through is a stressful aspect than society has no clue or cares about. We caregivers have to live too, and that takes some cold hard cash. I hope you can find a way to work things out and keep your Medicaid. I remember my Mom getting seven measly dollars over the limit to qualify for any Medicaid assistance. The nine hundred dollar Medicare deductibles for a hospital stay was a tremendous burden on the entire family. Good luck , Charlotte.