Calling the folks with psp

Dear Jillann, Shasha, peterjones, myjual, JudyJ, Steph02, all of you, every one in this community who has been diagnosed with psp, how are YOU doing? Please do tell! I would like to ask you to vent here as much as we carers do!

I am afraid we carers and our woes dominate the discussion here, and maybe you all get tired of reading about it. I feel quite guilty sometimes that I haven't asked for your input more.

And selfishly, I would like to ask you to share as much as you can of what you are going through, on behalf of your fellow sufferers who can't speak for themselves, and to help me help my guy. For instance, the only real complaint he has made is about his sight. He, who almost never uses bad language (unlike me) said recently that the thought of losing his sight scares him "sh*tless". His sight seems to come and go. I never know what is in his field of view, or how it is being processed. Can anyone tell me what it's like? My guy has always been very stoic and stubborn, and his ability to communicate is getting worse.

Love and peace to everyone here. One way or another, we are all in this together, and I care about you all. Please write! Easterncedar

59 Replies

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  • Thanks for this post Easterncedar. I do think of these folk often and am concerned if we don't hear from them in a while. I've messaged Peterjones but have had no reply so hope he and our other PSP friends are OK.

    X

  • Yes NannaB I just thought that we had not heard from Peterjones for quite a while, I hope he is ok, would be lovely to hear from you all. Yvonne 💐💐💐😄😄

  • Last I heard from Peterjones he had been in the hospital twice, didn't say what for, but was lamenting that he was going to need carpal tunnel surgery on both hands. That was a while ago, and I am concerned, too.

  • That would make it difficult to type then. If you are reading this Peter Jones, we are thinking of you and hope you can get in touch and let us know how you are.

    X 👍🏻

  • Yes EasternCedar,my husband J suffers with his eyes as well. He says he can't see anything and his eyes are so sore and sensitive to light that he sits in front of the TV with a handkerchief tied around his eyes and mostly just listens. It is very distressing to both of us

  • Sun glasses for skiing are really good. they have a wall(?) around the frame due to so much reflected light on the sunny slopes. This wall really prevents light from getting in at all. Cheap sunglasses are no longer an option. I bought Solar Shields for 30$ but I think he still wears Polar Optics...I don't know if they're the best but they work!

    AVB

  • I also feel guilty writing all about my woes and you PSP sufferers are the minority on this site. I hope you guys are all OK as you haven't posted for a while.

    Kate x

  • Yes F complains about his eyes and dizziness more than anything, he can't look down anymore, I'm trying to understand what his vision is like, a computer image would be nice, like there is for other vision problems, he also says very little about how he feels so yes please tell us

    Debbie

    Xx

  • Yes does affect the eyes become much more sensitive . Make sure you cleanse with baby soap and baby oil . Eye lashes can become crusty and itchy when you rub it scratchedps and makes things worse , cold tea bag compress is good.

    It's special awareness and holding the gaze .

  • the worst thing at the moment is my computer keeps crashing ... EWHICH IT JUST DID AS I WAS IN THE MIDDLE OF TELLING EVERU=YONE HOW THINGS ARE .. SO HERE GOOES AGAIN THE WORST THING AT THE MOMENT IS MY BLURRY EYES AND DOUBLE VISION .. I HAVE A REAL STRUGGLE IN SEEIG THE KEYBOARD AND THE TVA / ESP THE PLANNER WHICH IS JUST A BLUR SO I AM NOT ABLE TOO PLAN THE VEIWING FOR THE EVENING WHICH FREDDIIE LLI KES ME TO DO AS IT MEANS GE DIES NOT HAVE TOO THINK TOO MUCH SABOUT WHAT WE ARE MISSING SO I CANT DO THAT NOW WITHOUT FRED BEING THERE V V APART FRIM THE OBVIUS MISTAJES THAT YOU WILL NO DIUUBT SEE I AM OK .. I CONTIINUE WITH MY PHYSIO THREE DAYS A WEK AND I AM SUR THAT KEEPS ME GOING = LOVE TO YOU ALL ##

    SHARON XXXX

  • Hi, Sharon! Thanks for writing! Sorry about your vision. My sweetheart's eyes are so dry they can't sample the tears, so he has prednisone drops, which help with the blurriness. The double vision seems to come and go, maybe when he is tired? So he goes back and forth with prism lenses.

    Glad you are doing physio. Do you have a special program?

    And how are things with the house? My azaleas are blooming now, not as pretty as yours, but I guess your spring is further along now.

    Really good to hear from you.

    Love, and hugs, ec

  • Dry eyes seem to be a symptom too in this psp/cbd. My man also had dry eyes and was always searching for a hanky. Now he does not need his hanky as eyes ddon't seem to run! But now he seems not to see as well either!

  • Hey ShaSha! thanks for writing. you have had one heck of a time with your computer! I too have a love hate relationship with mine. B's has no downward gaze. Are you experiencing this as well?

    It's good to hear from you. please keep us on the up date!

    Love and hugs

    AVB

  • helo dont have much downward gaze or sideways as my neck is sticking forward now which us a pain and looks so awful!

  • Hi, Shasha! Good to hear from you. For what it may be worth, my guy had a LOT of relief for his neck, which was sticking forward, just as you say, from a short series of chiropractic appointments, early in his psp years, maybe 5 years ago. He was developing a significant knot, not to say hump, between his shoulders. I thought it was permanent, but it went away then and never has come back. His neck is pretty stiff and we try to massage it, but maybe I should book him for some more chiropractic treatment, now that I've thought of it!

    We are in a heat wave and drought. How are things on your side of the sea? Love, Ec

  • Hotsuey here too ec! I am glad to hear chiropractic worked! I will remember that for B...or me@

  • thanks dear girl! i may go to a chiropractor when we get backk to the uk .... as we have sold our house at last it only took 4 years !!!!

  • Wee-ha! Congratulations, Shasha! I am totally envious of the buyers(such a lovely house), but also glad for you and hope you are happy, too! It must be a great relief to have it done. Now, where are you going to?

  • mid wales on the english welsh borders as we cant afford the south of england where we came from although having said that we are both looking forward to going to the llandrindod wells area which is very beautiful as havig to leave this giorgeous house is breaking my heart

  • Oh, I feel for you Shasha. Moving is always hard, and you are leaving a special spot. My mother's family is from Wales. I don't know it well, but what I do know is beautiful. I hope you enjoy it more than you can imagine, and that your new place makes you as happy as you have been in France. big big hugs, Ec

  • Oh my, I'm so sorry to hear what your'e going through.. Have you thought of botox to release the neck muscles? Acupuncture may help as well . It might relax the muscles and certainly help with the pain. Physical therapy might be a good method to reduce spasm and pain....

    Thanks for writing. Keep us informed ! Love ya

    AVB

  • I guess no news is good news, I fell over last week and my wife made me go to A&E just as well as it turned out, i had too have three stitches put in my stomach where I fell on a TV stand. IT was really quite funny I had just got out of the bath and went to my bedroom it was quite dark so I went to the curtains to pull them back and let some light in the room' to my horror i saw my neighbour coming out of her garage and me being starkers naked moved backwards very quickly, well that was fatal l fell against the TV stand and started bleeding all over our new carpet we just had fitted. Well eventually I got up and cleared away a lot of the blood with the towel I Had with me and got myself dressed . eventually I told my wife what happened and as usual she first went berserk about the mess on the new carpet when she calmed down and saw the damage that I had done to myself she drove me to the A&E, I haven't been there for about 2 years since I had a swallowing incident. but all is now calm in our household a and next time I won't be so shy.

  • Hmmm..I just noticed my reply to you got lost. Sorry! I did write yesterday. What an ordeal for you and your wife.

    I guess modesty can be costly - next time let the neighbor get the eyeful! I am amazed that you were able to clean up and get dressed before going off to be stitched up! Stalwart man! I also feel for your wife and her new carpets. I find peroxide cleaners work as well on blood as anything can. I always have some of that and lots of bandages on hand....

  • I totally agree with EC, please dear patients of PSP, let us know how you are doing . Some of you have not been on this site for awhile, I worry . Jilliann I appreciate the likes, If all yo all can do is give us a thumbs up, that would be great. If you can give us a sentence on how your day is going that would be fantastic

    Remember we are indeed all family on this site....let us know what's up!

    Love and hugs

    AVB

  • My husband is the same it varies from day to day.He never complain s and it must be so miserable.Yesterday he went t to the local hospice day centre it was good for him,gave us both a break. His speech is very weak ,although he has a good appetite. His mobility is very poor although he still gets about the house with my help.We are in England and have the good old National Health service,were very lucky but its under a lot of pressure just now.

  • Hi there one and all. M name is Bindi and I think I have previously made x1 post on this site1!! Reading all your communications, I really do find quite inspiring generally (some times a wee bit depressing ........). But I thought I would post my story - such as it is!! Now it is a matter of where to start!! I guess I will begin with a little bit about myself. I am 61 years young, I have three beautiful children and two step children, plus three and a half grandchildren in addition to 2 step grandchildren.. The ages of my grandchildren range from 11years down to "due in September and December"! I am on my second husband (Adrian) who is being absolutely fantastic during this incredibly difficult time and if anything, I think it has brought us even closer together. Even though I received my official diagnosis last August, I suspect that some of my symptoms may have started a couple of years earlier - However, my youngest daughter, at the age of 20years (in 2012) had a heart transplant (as a result of a virus!!!!) and with everything that went alongside that, my life was never the same again1!!! and I know that hers has never been the same either. It is rather interesting now, nearly 4years after the event, that I receive regular texts from her in the early morning, saying things like "Mum are you ok? I just had a dream about you having another fall!!!!" I guess as recipients of this disease, sometimes we forget the affect we can have on our significant others. I am so incredibly aware of my husband however - I keep trying to encourage him to take a few days of leave from his duty to me, and to take himself off fishing......... .but he has not been able to do that yet. Re my symptoms - Well, I have very marked Micrographia (small handwriting or printing) and I know with hindsight, that it was beginning to deteriorate for about 6 months prior to my resignation and subsequent retirement from my nursing position (within Queensland Health). Another rather interesting early symptom was my right arm did not used to move when I was out walking with a friend (who happened to be a very educated Gerontology Nurse), who then began to question me about it - I had absolutely no idea of course so ignored it for a good 6/12 or more! The other two symptoms which I unfortunately also exhibit are the falling backwards trick and the speech deficiency (which I am more than happy to discuss in more detail should someone express their interest!). So at the moment, we are a wee bit in status quo as I also needed some surgery (on Feb 26th 2016) for an Achilles Tendon "blowout" and even 6 weeks after the surgery, I had another tear of the surgically operated site!! Still I am moving forward now and starting to plan for our next trip - either the Alaskan cruise or coming over to the British Isles for a couple of months!!! So, thank you ion advance for allowing me to express myself on such a wonderful, supportive website. x x x x x x x xx x x xxx x x xx x x :) :) :)

  • Thanks very much for your reply, Bindi! That's what I was hoping for when I posted. Nice to meet you! I look forward to more. Best, ec

  • Make sure you do that trip Bindi. X

  • Too many carers bitch and moan! What! Put yourselves in our shoes. It ain't pretty, and damned tough. I don't understand how people claim PSP and talk about their walk in the garden. Really! I was diagnosed in September of 2010 and need help for every function. I still use a walker, but only with help. Being trapped, with a good mind, in a failing body is NO FUN...

  • Hello, Fhall. Right, very right - you folks with psp need to bitch and moan here, too. Are you typing this? I ask because my sweetheart hasn't been able to use a computer now for several years, and he was diagnosed in 2011. The OT once suggested he try voice command software, but technology escapes him now, although he was reasonably savvy before he retired. And now he can barely speak at all, so no help there. Psp affects each person so uniquely, that it makes it hard to generalize about the progression. Some days, very rarely now, he gets up and walks, some days he can't move the wheelchair. Anyway, I do want to know how you are feeling and coping, because he can't always speak for himself. So thanks for replying. One way or another, we are all in this together. Best, Ec

  • easterncedar I type, but I am really slow. FB keeps me in touch. My post was not to be critical, but Jeez! I can still get out with my scooter and the lift on the Odessey, but getting to and into the car is tough. Staying upright and safe should be the patient's responsibility not the carers. I went to one of Jimbo's (now deceased) meetings and kinda freaked out after seeing the other attendees. We never went back! I am healthy apart from the eyes and weakness and making it day to day...Bill Hall

  • Hey, Bill. It's great you can get out and about. Good for you! But please believe me, my guy is not failing for lack of effort on his part; if anything, he tries too hard, and there's where it gets dangerous. Hard to get used to the notion after 70 years of walking that your balance is shot to hell and gone. But he's still fighting, and so am I. And I'm very glad for his stubborn gumption. Except when he smashes a toilet, although that hasn't happened for a few months now, touch wood.

    So you met Jimbo. He was such a presence here for such a long time, I was really shocked to learn he died so shortly after his wife. Unfair. Unfair. And I believe his first wife died young of mad cow disease, or whatever the human variant is called. terrible.

    I don't know what the point of all this suffering is, but I definitely would like to have a word with the management sometime. Meanwhile, we go on as best we can, I suppose. Day by day, as you say. Best wishes, ec

  • Hi Fhall, yes I do bitch and moan as a Carer for my husband! I'm sure sometimes I go over the top. If I have offended you in any way, then I am truly sorry. My husband has no communication now, so I feel it is my job to make his voice heard, in any way I can. That's why it is so helpful, having people like yourself, that are still able to "talk", on this site, to help steer us on the correct path, so we can look after and speak for our loved ones.

    Lots of love

    Heady

  • Hi everyone, I'm Eileenie. Reading the posts doesn't make me feel any better.....but I do want to know what will be happening to me. Going to move into an assisted living facility in July, it has gotten to hard to live alone. Using a walker, pretty much dragging my feet now. Unable to get out of a chair or bed by myself so I live....sleep, eat, in my lift recliner, been doing this for a year now.(Going to buy a hospital bed when I move). My legs burn, ache, pain in my back, actually I have pain all over.....just live with it...every night I do take Gabapentin. My left side doesn't work any more, the right side is showing signs, making me worried about how much longer I will be able to type, brush my teeth, hair. Pronouncing words is getting harder. No swallowing problems yet. Keep praying for the strength to live with and die with this disease.

    How long will I live once I am stuck in my bed.....Will it be time to call hospice?? I live in USA, Nebraska.

  • Hi, Eileenie. I am so sorry to hear what you are suffering and that you are coping with this on your own. I honestly can't imagine how you are doing it. Do you have any assistance? And may I ask where in Nebraska you are? Do you have a doctor you trust? I have deleted two messages to you so far, finding no words adequate in response to your reply. It is what I hoped for, to hear from you, so I will thank you. Please keep in touch. I really do care. Inadequate though this one also is, I will stop trying and just send this on. Really, thank you. Love and peace, Easterncedar

  • Hi Eileenie. Assisted living should ease things somewhat. Living in the recliner is not good, but it's understandable. try to keep up with this site and put your worries on it. There is a lot of knowledge and help here. X

  • Hi, Eileenie! I wonder if you have made your move and how you are doing generally. I hope you are more comfortable now. I'd be glad to hear from you.

    My guy is having his first stay in a hospice facility while I am staying with my mother, who has given us a bit of a scare but seems to be getting better. He is getting really good care, and the staff loves him, but we will both be glad next week when I can take him home.

    On we go. All the best, Ec

  • My dad wears sunglasses when watching tv it seems to help

  • Thanks for your reply. I live in Lincoln, Ne. I went to Mayo in Rochester, Mn. for my diagnosis in September 2014.....didn't get answers here. My doctor has never had a patient with this disease but knew about it when I saw her after my diagnosis. I see her every 4 - 6 months to go over changes I'm experiencing.. Falling and walking funny started in 2011. I'm a young 67 year old. Someone comes once a week to get groceries for me and vacuums for me. A sister comes for a few hours every week to clean the bathroom, do dishes if I have some in the sink and makes me happy if she brings leftovers for me to enjoy for my evening meal. My lunch is delivered everyday, meals on wheels. Most days the only person I see is the person that delivers my lunch.....thinking the facility will be really good for me.

    Not afraid of dying but, I am afraid of what I have to go through before I do. I know this is hard on me but I feel nothing but admiration and compassion for you carers. God be with you all.

  • Gee, Mayo is supposed to be so good, maybe the best clinic in the country overall, and I have looked on their site for information many times. I would have expected better of their medical staff. But then a lot of us here have complained that the neurologist who first diagnosed was no help at all and apparently had no sympathy, just suggested we look it up on the internet. It seems to me that neurologists, like surgeons, are both more like engineers than other doctors, and don't really see the whole patient.

    I hope you your assisted living arrangement is a great one; it does sound like it will make your life easier, more comfortable and more sociable. My guy can't communicate very well any more, and I worry that if I were unable to care for him he wouldn't get good care at a facility since it is not always obvious how aware he is of everything around him, and he needs help with absolutely everything. On the other hand, since I go to work and leave him with aides during the day I wonder if he couldn't have more social interaction. He doesn't complain about anything, so I just don't know!

    He was limping when I met him in 2006, but wasn't diagnosed until late 2011. The falling was very bad for a long time. How do you manage that?

    Your compassion for the carers is appreciated. Please know I admire your independence and courage. Thanks for writing. Let's stay in touch!

    Love, Ec

  • That is what concerns me as a carer! How do we know when our loved one appears to be 'not home', if they are in fact really there. Has anyone been able to communicate with a loved one who has great difficulty communicating? Is there a way to find them?

    When my man and I were dating, he used to stick his tongue out with a smile! I find sometimes I get a response if I stick mine out. So old memories appear to linger longer - if that is any help!

  • I re-read you're reply.....I didn't do a good job when writing my reply to your post. The doctors here in Lincoln weren't able to help me but Mayo did, I was there for four days and had a test(s) everyday while there. The doctors there didn't want to send me home without a diagnosis, it truly is an amazing place!

  • Oh, I see where I went wrong. Your answer was fine. Glad the Mayo deserves its reputation. So may I ask what you did for work? You sound so self-possessed.

  • Most years I worked in different business offices....retail. gas companies, insurance, my last job was with a group of cardiologists, worked in the billing department. Usually had a position as one of the team or as the leader/supervisor.

  • Wow eileenie, you are amazing and so organized. You have got the schedule of assistance taken care of and I think that you being able to think for yourself is wonderful. My guy waits to be served and maybe I am enabling him instead of helping him. Since you are living alone, you haven't had a choice, but to take care of yourself. Fantastic! Let us know how it goes while in the assisted living facility. So glad to hear from you. Please keep sharing your story with us.

    Nikkie

  • Would love my man to be able to reply!

    He has forgotten how to use his computer, how to read, how to play soduku, how to play solitaire! And all in the past month! He has said he is bored so introduced Dominoes. He moved several pieces around the table today, but has completely forgotten how to play! Or that he told me he did not know how to play 3 days ago!

  • honjen43, how long has he had psp?

  • He doesn't have psp. He has a diagnosis of corticobasal degeneration (CBD). Both are similar in that they are degenerative brain diseases. Seem to be some overlaps in some symptoms as I see it. Was treated by GP for Parkinsons 9 months ago, and confirmed by neurologist once we finally got an appointment 5 months later. I have always questioned the diagnosis as deterioration has been so rapid and madopar did nothing to improve matters. It is only since being admitted to hospital on May 2 that CBD was diagnosed after I insisted a neurologist was consulted. It fits with how I have seen the progressive loss of mobility, muscle and cognitive ability over the past month. And now the onset ofpneumonia. Even now, the medics don't seem to appreciate the speed of the degeneration.

  • Oh my, honjen. What a terrible ordeal. I'm so sorry.

  • Hi honjen43

    Interesting how they lose interest in things they loved like soduku, coin collection, etc. Since our stem cell injections I have noticed that my guy is back to ready the newspaper daily. He will read aloud and share articles with whoever will listen. He is also reading cartoons and magazines. That is an improvement and I am sure it is because his vision has improved with the stem cell injections.

    Hang in there.

    Nikkie

  • Oh my. That's amazing. Now I feel I should look into it for my sweetheart. Thanks and please keep us updated! Love, ec

  • Didn't answer your question eileenie ! Not entirely sure. When I look back, it must have begun about 4-5 years ago. I base this on his slowly reducing ability to do general chores round the house, less distance walked, apathy, ability to complete and file household accounts - this I found after I took over their handling as I got fed up of badgering him to pay bills and finding them overlooked; not going to the gym he paid for monthly and not cancelling his membership for another 2 years! Reduced physical activity, slowness to book holidays he wanted us to take; and a trip to UK via Singaporewhen I had to take over when he was mentally unable to collect his gear, tickets and organise us into the airport coach. I recollect I had already arranged wheelchair assisted transfers, most of which he refused, except in Singapore when he had this 'meltdown'. Then while in UK we spent a day in Devon (lovely spot where you psrk at top of hill, walk down and get ferry across - name escspes me!) and once across the ferry he collapsed and someone kindly provided a chair for him to recover on. Don't know if stroke or very low heart rate, but it fast tracked him to get a pacemaker when we returned home. That was snother symptom, very low heart rate, grey faced looking like death wsrmed up for several hours after no great effort.

    That is the long story! Short one is diagnosis made about 3 weeks ago in hospital!

  • Hi Easterncedar

    This horrible desease has hit us as well, my mother in law was diagnosed with CBD this spring but Ithink this started 6 years ago with a tickle in her throat that was treated with thyroid surgery. After many doctor and specialiest appointments I decided to change her family doctor and on the first visit she noticed her shuffled walk and referred her to a movement specialist. Thats when it all began, she was falling prior to this but within a week of her doctors specialist she fell out of bed and broke her ankle. She was in hospital then rehab and never fully recovered. She is now at home with 24 hour care as we all work to help support the costs for her care. We are on a crisis list for a home but in Canada the wait is very long and there seems to be a criteria you have to fit into to get admitted, strange but true.

    She is unable to care for herself, cannot walk more than 2 steps with great assistance and we just found out that her swallowing has become very weak, she has excessive anxiety and has not slept more than 2 hours for more than a month. Her speech is VERY poor an she struggles with every word. She calls many times throughout the day, I would say at least 30 calls just to hear our voices. I have to say that she gets daily visists from her family but they happen after work. Having known her for over 25 years, I think she is afraid that if she goes to sleep she will not wake up, which is one of the causes of death in this horrible desease. My heart breaks for her as she was once a very strong and independant women. Her fear was to become dependant on someone and have to go into a home. Her biggest fear is now her reality.

    The specialists gave her a yet another sleeping pill that does not work, I think they are more interested in studying her progression rather than keeping her comfortable. At her last visit the specialist, which by the way are leaders in the field of Parkinsonisms in Toronto, I was told she is at the end stage of the desease. What does that mean??

    Has any one else experienced these symptoms in their loved ones????

    I am happy I found this site to be able to talk to so many people affected with this monster of a desease

    Paola

  • Hi, Paola. Thanks for responding. I'm very sorry about your mother-in-law. CBD does progress sometimes very rapidly, but with PSP and CDB there is so much variation between patients that it is hard to generalize in any useful way. I know my guy, now beginning his 6th year post-diagnosis of psp, needs constant care. He finds it very hard to settle for long. He is on a low does of generic zoloft for his anxiety, and that seems to help. He had a couple of bouts of real obsessive agitation before he got on that. Where in Canada are you, if I may ask? Love and peace, Easterncedar

  • Hi Easterncedar

    We are in Toronto Canada, where care for the elderly is poor at best, she has been on 75m of zoloft for a while and now is on zopicolne 10mg as well nothing is helping her. Personally I think her first symptom was the speech but since she lived on her own she rarely told us of any falls until last spring when she fell and needed stitches. Of all the symptoms her anxiety is the hardest for her to deal with and it is so very hard to watch her struggle with her own peace...I'm happy to have found this blog, didn't realize there were so many people struggling with this monster,

  • I was born and raised in Niagara Falls, NY, and my family has a cottage north of Temagami. We used to visit Toronto pretty regularly, so I have fond memories of your city. I sympathize with your concern about your mother-in-law. It must have been awful for her to feel herself failing and trying to keep it together while she was on her own. Care in the US is very hard to get and expensive, and we are in Maine, which has very little in the way of facilities. I am utterly grateful that my guy spent a stint in the military, because without the help he gets as a veteran, we would be lost. He did get some comfort from talking to a psychologist, while he could still talk. Can your mother-in-law speak? Peace, Ec

  • I just passed through Niagara Falls Ny a few months ago en route to Florida. Toronto has changed so much in the past few years.

    Like the US the care for the elderly here is pityful, we are paying about 5000CAD out of pocket monthly for 24 hour care for her, I was told by our social worker that a nursing home refused entry to an elderly gentleman becuase he made too much noise. It is something that I find hard to digest. When she lived alone, she never told us any of her symptoms, only that she was finding it hard to speak, like she had a tickle in her thoat, after she broke her ankle however CBD reared it's ugly head with avengance.

    A year ago she spoke briefly to a psychologist, but being Italian she is not open to discuss personal problems with a stranger.

    Now we are struggling with guilt, that we didnt realize her state sooner, even though we would be at her place daily if not every other day. I watch my husband, God bless him, take call after call from her with such patience and kindness. I feel that she knows she is starting to loose her mind and it is driving her insane.

    May God bless everyone going through this

  • Yes, care is ridiculously expensive - if you can find it. I can't afford to quit my job to take care of him, and would probably go stir-crazy if i did! We were lucky to find one very good, solid person to take half the time. The proverbial treasure. I would clone her if I could!

  • We are in the same boat, we have to work as well but are having a heck of a time keeping caregivers.

    At least you do get time off even though it is for work, helps rejuvinate the mind...

    God bless you for being able to take care of your handsome man....as they say 'for better or for worse'

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