He froze on the sofa, couldn't get him to stand up and then he slid off to the floor. He wanted to go to the bathroom. Called my daughter and between the 2 of us we managed to get him into a wheel chair. By back is now killing me and I don't now what I am going to do. Put depends on him for the nite. I am so scared.
2 HOURS TO GET HIM OFF THE SOFA: He froze on... - PSP Association
2 HOURS TO GET HIM OFF THE SOFA
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Auddonz
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Oh dear just hope you can get people to help you, have you not got careers? Not sure where you are? My heart feels for you. Yvonne xxxxxx
Live in Fl in the US. I can only call 911 a few times and then they won't come any more.
I'm sorry to hear you had a struggle, it must be very stressful and exhausting.
I just wanted to say, don't ever be afraid to call for an ambulance if you can't get him up. My boyfriend is a paramedic and it's definitely a job that you should call for help with, otherwise you could both end up injured. They go to a lot of people who have hurt themselves trying to manage on their own, and they'd much rather help people avoid getting hurt (and maybe get a quick cuppa while they are there!), rather than have to transport you after you've injured yourself!
Also have some info ready for them on PSP so that they can begin to understand, like one of the little PSPA cards or leaflets. As you know, not many have heard of PSP or CBD, so you can do your bit to raise awareness whilst they're there!
One of our friends was diagnosed with PSP a few months ago and our local service are now much more aware and the crews tend to be interested and want to help.
You've got a long journey ahead of you and you need to get the right people doing the right things to support you, and save your energy for just coping. At least you don't need to be assessed or secure funding to get a crew round!
I hope today is a better day for you. x
hi auddons well first of do not be scared that will only make it worse for you and it will not help your back either mate nor your husband so just stop for 5 mins take some deep breaths and now what are you going to do for one you can ring somebody and tell them the situation you have just hurt your back trying to get hubby up from the floor and you cannot lift him anymore could you have a carer for a while try ringing the psp
place they might be able to put you in touch with someone in your area p=]ok nopw mate I hope so good luck with that matey take care peter jones queensland Australia psp sufferer
hi auddons you can always call an ambulance out mate they wont mind coming around and lifting him up for you
I know this by my own experience they have always been real good but this is only a short term fix mate the main thing id to get your hubby off of the floor but don't be scared because you will have lots of days like this or some situation will crop up mate see yer take care all ok now that's great matey see yer peter jones queensland Australia psp sufferer
Hi, sorry don't know where in the world you are, I am presuming North America or Canada. Can you get any home help? You ARE going to need it!
On freezing, I was shown by someone, make the person look you in the eye, difficult for our guys, I know, then get them to move. It does work sometimes!!! Always have a bottle handy, so if you can't get him to the toilet, it doesn't matter. I thought this clinic that your husband was in, were teaching him how to get up? Obviously they failed at that as well!!! You MUST GET someone to show you and him, how to get him off the floor, so you don't put any strain on your back! THIS IS SO SO IMPORTANT!!!!!
I know this is a daft thing to say, but please, please don't be frightened, it will only make things worse for both of you. Think back you when you first bought your daughter home, when she was born, any sign of fear and that was it, they screamed for hours!!! Well mine did! Your husband is going to be the same, he will sense that fear and act negatively! Not good in PSP,!!
The next few days are going to be hard, keep posting, we will all try our very best to support you, every inch of the way! I think in your case it's, take each hour as it comes, a day will be be far to long. Things will improve, slowly, just try and keep positive!
Lots of love
Heady
Heady he is back in the hospital. Couldn't get him to move this morning at all. When the home care nurse came she flat refused to care for him since he couldn't turn or move. Has a low grade temp. Turns out he has a UTI, severe case and they felt he was to weak to go come. Also want to do some more tests. I am not dealing with this well at all, one thing after another, to fast. Have a urinal here for him to use. All they will tell me at the hospital is that they are waiting for a bed and he is stable. I am petrified and so tired.
try to get him to only use a higher chair always . as previously said use a bottle . as my husband got worse, especially t night having to get in and out of bed to wee I approached the GO and explained he arranged for. Nurse to visit and she the provided sheaths and bags to save him getting in and out of bed at night . saved bit of U.S. .
PS . if he happens to side into floor and no he gets stuck while trying to get up . find a dining chair turn it over and push the back of the chair under him to support him while he has a great her while getting up
Have urinals for him and bought depends. He knows he can use the urinals but last night he couldn't reach it. He had earlier. He is so exhausted from all of the struggling.
Has the OT been to your house yet? I don't know where you live or what the medical help is like but I think your husband would be better if he had a rise recliner chair. It has advantages and disadvantages. You will be able to get him into a standing position much easier, but he will also be able to get up so you have to keep watch all the time or have a pressure pad fitted so you know when he is on the move. As others have said, try not to be scared. I hate to tell you but you are probably in for far more scary moments than what you have just gone through, some of my scary moments were seeing my husband after:- falling through two panes of glass in a greenhouse, falling backwards into a pond, pulling a 5 door chest of drawers on top of him, lying at the bottom of the stairs, head gushing with blood after falling from top to bottom, pulling a wash basin off the wall. These are a just a few, there have been many more. Whilst being aware of risks around the house and adapting if possible, try not to worry about what may happen. It may not and then what a waste of emotional energy it will be. He will pick up on all your emotions and the more anxious you are, he will react to it one way or another.
Get as much help as you can and have time off when you can. When he is asleep or watching TV, do something for you sometimes. Don't rush round doing housework or cleaning. It will wait for you and if you do it, it will soon need doing again. Try and get out together as much as possible. The time will come when it will be more difficult as I am finding now. I'm so pleased we did so much during the last 5 years.
Sending you a big hug.
Nanna B
My brother-in-law had parkinsons and when he fell at home he was too heavy for my sister to pick up, so she had to call an ambulance and there was no problem with the ambulance crew picking him up.
You need a Hoyer lift. That device will help you get him up from the floor and move him anywhere you like. Check with Hospice or Google it for more information.
Jimbo
Couldn't get him to move out of bed, nurse came for home help care and sent him back to the hospital. Low grade fever
Oh no! After all your hard work getting him home. Don't kept this set back, get you down. Persevere, get him home home again!!! Don't let PSP win this battle!
Lots of love
Heady
Thank you all for your caring. I will not send him back to the rehab but I have to find someone that will come to our house and help me and him with daily routine things tat he could normally do himself. Like dressing with some help, getting him moving. They said he had a severe UTI infection that was really bad but want to do some more tests, like swallowing. I am trying so hard but getting up last night when he slid to the floor from the sofa, I hurt my back.
The VA provides 10 hours of home health nurse aide for us. (we have three visits 3,3,4 hours). Now as a home hospice patient, my husband is now entitled to an additional 2 visits per week from an aide, a nurse visit and a social worker visit. (A bit too much for us but we like the aide coming on the off days from the VA provided aides.
Talk with a VA social worker who can explain the benefits available to your and your husband. I wouldn't be able to care for my husband at home were it not for this assistance. Talk to more than one since he/she may not be up to speed on what your husband needs and is entitled to.
Hang in there. It is scary and the fear of getting hurt while trying to help is real. I was told by our hospice team that if my husband falls to call them. They make arrangements with the local first responders to come or they come themselves.
We live in New Mexico and we are now on Hospice, they are only a phone call away. We don't have Medicare yet as he is not 65 yet. Maybe that would work for you? I'm sorry to hear you are distressed. Peace to you
Sorry to hear that your husband is back in hospital, don't lets this horrible illness win, once you have everything set up you will be fine, sending you loads of love and a big hug. Listen to what people are saying and have a rest while your husband is in hospital, get your back better, and get some sleep so you will be able to cope when he comes home, and you must let people help you. Big hugs to you Yvonne xxxxxx
Yvonne he is being treated for a UTI which seems to have him back a lot. He is very weak but did say he was starving today. They will be giving him a swallow test Monday to see if he still able to swallow normally. He will not at this point be able to come straight home unless he suddenly gets strong. TY for thebig hug and love, it means so much to me xoxo
like nana said we have all been in this position sometime or anothe . you think it's the end of the world and wonder how you are coping and for how long you can continue .
You will though . every one on this site understand what you are going through .
hospital visiting is very stressful and tiring . do you have friends or things you can do even for a very short time to help take you mind of it all . it's amazing how that can help . pleas don't feel quite when you are away from him . easier said than don't I know .
the Boyer lift is a very good idea but we have carpets and I found it too heavy for me to push . we now have the portable ceiling hoists . of course you husband probably isn't t,hat far Down the road in this journey . it is a journey with lots of twists and turns but then you suddenly get a straight quieter road now and then and it gives you the strength to carry on .
I had the same thing with my husband he was 70 at the time and I was 67 . He is now 81 me 78 , I can't believe it sometimes . I do everything for John carers come morning and night but they have very little to do because it's all don't by the time they arrive .
I am starting to have sitters in soon though . A I need to be able to leave the house sometimes but know he is safe and as confortable as they can manage .
when they sort the infection out and they will do , also check if he has any other problems ( does he ..?) john has Atrial fibrillation arthritis and now gout on top .
until 70 Was fit as a fiddle and swam daily .
I managed and learned all the tricks of the trade by googling any symptoms that arose Wheth Hallucination, he has had those bad one mostly caused by mess , Sticky up toes fingers ! Washing bed washes ., turning in bed with Parkinsons getting out of a chair . whatever is worrying you at the time . it's all on there
it worked for me and kept me in control .
having said all that this site is a lot like Googling isn't it .
Chin up I hope he is better soon . I brought John out of hospital too soon although he was better at home they would have set the things in motion gravy for us when he got home , .
well here goes again . john had me up again this morning early before the carers am needing the commode . . sorted the tha with NO RESULT. Carers been he will ask again soon he normally does after they leave . It's Sod's law or maybe it's JOHNS Law not so sure lol
cabbagecottage, He has a very severe UTI infection and he is very weak. He is having trouble opening his eyes, much less his arms or legs. Why, why is this happening so fast. They are suggesting Hospice house which is not a long term facility but a place they can care for him 24/7. There is a Dtr there all day. They will keep him at the hospital but since they had to look up what PSP is, they are thinking this drastic change is from PSP not the infection. They just don't know. If he goes to Hospice, he will get his meds and care he needs but do not do pt or ot. I know he can't go home in the condition he is in. i don't know what to do but cry.
won't they keep your husband in the hospital at least until the infection is controlled ,
it's must be dreadful when things move at such a pace but don't give in . I can't count the times I have thought it's the end but he is still with me after ten years , It's hard very hard stressful and tiring .
three years ago my husband was in hospital after a knee op and I had a dreadful time trying to get him out they told me I wouldn't manage .
An infection can cause all sorts of problems and take a while to recover from. I don't know why they don't check for them sooner .
my husbands eyes are now closed most of the time and I have often posted how I bathe them in warn baby soap and baby oil . it clears the dry crust which can make them itch and when rubbed get sire . I do it at least twice a day . It makes it more comfortable for him .
visitors come and a,ways sat o he is tired , I tell the he shouldn't be he hang done anything lol . If you
Don't laugh sometimes u cry . he isn't tired but I am , he can here everything's and understand , I tell them to talk to him he will answer slowly and not hold a big conversation . he is better at asking questions than answering them .
is your husband speaking at all . try gently bathing his eyes . a nurse told me about it . then ask him to open them or look up . is his head bent. Forward
are you on your own Auddonz
Yes they will keep him there until the infection is gone. He is speaking but in a very gravely voice. Does any kind of infection make it worse It happened over night? He is almost completely frozen but can move his hands and his feet but not his legs. His head is not bent forward that I can tell. Mouth open and eyes shut for everyone else but me. Since I had to explain what he has they had to look it up. He won't speak to the nurses or open his eyes for them. When I got there it took me a while for him to realize it was me. His vitals are ok so far. I feel like I was attacked by the woman who said send him to hospice. I think there they take away all of his meds, he has serious heart issues including AF. They are giving him nothing as far as his meds are concerned, afraid he will asperate them into his lungs. My daughter is going to the hospital with me since my legs are so weak I am afraid I will kill myself driving. He knows he will be having the swallow test tomorrow. At least he knew tonite but I don't know if he will remember tomorrow. Doesn't know the consequenses if he can't. I cry at the drop of a hat. It's to fast. He did say I will be better when I come home. Thats all he wants is to come home. I can't handle it in the condition he is in now. I am terrified.
cabbagecottage, Yes he has Afib along with a pacer/defib. Unless he suddenly gets much stronger, he is very weak now, I won't be able to take him home which breaks my heart. Also arthritis and there is something in his left lung which they are going to try to figure out what is going on.
Your right visiting at the hospital takes so much out of me but I need to see him. He is my heart. Your right this site is better than googling which drives me crazy. My friend calls me, she was my maid of honor when we got married and wants to make sure she knows what is going on. She lost her husband about 6 months ago. Its ironic, we don't see one another but illness brings us back together. This site keeps me together as well. It kills me that I can't stay with him all day but I am exhausted.
Does he take seroquel because it causes them to freeze. My dad was on a low dose of 50 mg a day and it caused him to be very stiff and would freeze. His Dose was lowered and he was also put on benzotropine to help with side effects. He is not stiff any more due to being put on benzotropine. Hope this helps you and others who might be going thru same thing
as Mcpnnie says mess can have side effects . what is he on . And for how long .
knowing how upset you are , how old are you both , will make him stressed and stress is a killer for anyone but with PSP or Parkinwons it makes it much worse .
I am not comparing him with John because John has Parkinson's an late stages though .
We have gone through the same journey as you .
they will admit they don't know or specialise in awful illnesses so don't be afraid to speak out . when John went in I made a list of all the symptoms and ways and mean of how we coped . Also a list of meds . anything that I could think of , I gave it to them as soon as he went in and they were most grateful . I was afraid they would think I was trying to tell them their jobs , but they didn't .
infections can cause so many things including hallucinations and delirium ,
I expect like me you are asking him how he feels or what is wrong , How can I help you . their head gets scrambled and it can become too much for the ,
I read to only ask one thing at a time without too many choices . Options .
he will be slow my John sort of switches off and jumps and jerks especially while in a relaxed mode and freezes . . If he is laying down its worse because he cannot move from that position or turn .
hopefully they will sort his meds out withies in there , they should contact his consultant . Has he a nurse .
Is John home or in hospice or something like that. He is on carbidopa-levodopa and other heart and blood pressure meds. Am assuming he failed the swallow test because he said thy want to put a hole in my stomach and he said no. Not quite sure he knows what it means. I just checked my emails as to when he was diagnosed and it was the end of March. So fast.
Addonz , maybe it would be a good idea to go and see your own GO and have a chat tell him how you are feeling ,
What do you mean my own GO? My primary Dtr? I am feeling like I am going to fall apart.
john also has heart problem , atrial fibrillation , it appears most people I speak to who had Parkinson's also have A F
Just spoke to him and he said they want to put a hole in my stomach. He told them no. Assuming he failed the swallow test. I wonder if I can take him home? Don't know if I can get help here to take care of him, turning, bathing, etc. He wants to come home. I don't think he understands what the hole is for.
Sorry I meant GP or DR
A how old are you m we are all different at coping . some more able than others , I think it must have lost my vocation ,Only ever did office work , Wages etc.
have you got a good relationship . I am not being nosey , but like I say everyone is different .
is he an easy man . my John has been especially easy for me in this case his nature hasn't changed.
he is depressed andanxious but who wouldnT be its part and parcel . ar they saying they want to do a peg feed for him . they need to give him a chance to receiver . have you spoken to the consultant are they esplaing get things for you , Have you got someone else with you at the time . do you have children .or family around you .
I a, lucky that I have always been able to turn my hand at most practical . I'll will use a screwdriver or hammer lol
I do everything for John . Including cut his hair and toes nails although recently did callout a podiatrist .
I arranged everything at home . Got the swallow test and continence nurse sorted myself .
as far as John is concerned I will fight for things . That's not to say I do the same for myself .
they should sort any help out at the hospital for you . They should contact the occupational therapist and social workers .although I haven't asked where you live
We live in S Wales UK
We Live in the US. Can your John move and walk? Right now Don Can't. I think the UTI set him back. He was doing so well.
No. We have been through all the things you are saying don't give in . my John is now house chair if bed bound . still mentally aware and understand everything , so each not akway good but we get by . I have had to get rid of furniture to make room for chairs bed downstairs and commode chairs , we have a ceiling hoist over his chair and bed . Social services are aware and arranged carers twice a day .
I have found it hard to let go so they don't do that much for him but are always there . I am going to have to step back now though I am more tired and painful neck and shoulders . If when he does get back home u might find a big difference if he feels better. . It's not an easy road though I am afraid .
I am afraid that he won't get his strength back to be able to walk again. This UTI has set him back so much. We have a one story house but will get rid of things if I need to depending on his needs. I was thinking of the hoist for his bed which is right next to my little twin bed. Gave away our queen. I have to be close to him. If he can't walk than everything I had done in our small bath, all kinds of grab bars, took out a mirror sliding glass door which backs the bathroom to keep him safe. I hurt my back and shoulders the one night he was home. I knew I would trying to move him but I will do whatever it takes.
Auddonz the urine infection can make them go like that, please look after yourself, you sound very low. Because you live in America, not sure what they provide for you? If they send him to the hospice, does not mean he will end his life there, they can look after him, more than likely better than the hospital, you must keep strong for him, if he has the peg fitted, he will get stronger, because he is being fed through it, please look after yourself, and let people help you, you sound so sad, you need to really look after yourself so you can be there for your husband sending you a big hug Yvonne xxxxxxxxx
You are so right Yvonne. His nurse said he is much better today and they are feeding him a mush diet, like baby food. I spoke to the Hospice people but want more info from them. I am sad, woke up crying and am trying to get myself together so that when I go to see him I will not upset him. Big hug back Audrey xxxx
hi audonnz /cabbagecottage
i cannot add much to what has already been said but just to le thyou know that you can survive thsi audonnnz
and cabbage cottage you are doing so well on your own and with john but plz don't neglect yourself = of anything happened to you how would john manage??
lol JIll
I know jillann , Auddonz . Listen to what they all say and try not to give up ,
my mum had a big stroke , was in hospital for five months and caught MRSA .
she was fitted with a leg . she had to go into a nursing home. , I didn't know at the time about all the aids and help we can get . I look back and wonder if I had know maybe I could have cared for her myself but at the same time John started on the parkinsons road .
she got much better with the peg and never had a problem with it . She lived a further three years . it did break my heart when I had to sign her to go into nursing home but it was the right and best thing .
we have a to story house so I am still sleeping upstairs , I have hot a remote doorbell which is attached to John s bed and I also got a baby monitor . I can even hear him breathing .
there are ways and means of getting round things .
I stayed at the hospital with my husband but am lucky we have a daughter who supports me . she can't do anything for her dad but supporting me she is helping him .
do try and get out yourself , do you have hobbies , or friends you could even have a coffee with . And hour away recharges your battery . It does for me . don't feel guilty .Please . I know we all do if we love someone so very much .
I woke up this morning crying so scared. Then called the hospital and spoke to his nurse today and she said he is doing so much better today. She fed him breakfast, they have him on a easy to swallow diet, orange juice thickened, mashed banana and chocolate pudding for breakfast and she said he was absolutely thrilled to be eating. Knew he had eaten since Thursday. UTI seems to be responding to meds. The only thing that upset me is that he is not being given his blood pressure meds and when I asked her what what the numbers were, I asked her to please get in contact with the Dtr and put him back on them stat. She said she would. He was telling her jokes, kidding around, sounds like my Don. Praying it is turning around and hopefully when he has the swallow test tomorrow he may not need the tube. i don't have many people I can turn to that can understand what is going on in my heart and soul. Always been someone that finds it hard to make friends and can't put up with bull from people. My daughter is helping me as much as she can because she knows that when I am upset I won't eat much. Tomorrow she will be back at work and my back is hurting from trying to get him up on Wednesday, along with my shoulders and arms and legs. I am a mess but the nurse made me feel so much better. My hobbies, actually my business is, I am an antique dealer and don't have the strength to list things much less look for merchandise.
that is very good news Auddonz . . when anyone goes into hospital suddenly , the staff don't know anything about them so it takes sometime to sort meds out . often they will stop any they are already taken and reassess and star again .
parkinsons UK have leaflets that you can take into hospital with you whispch say GET IT ON TIME . meaning that all Parkinsons meds are important and must be given in the times prescribed .
now he is in hospital try and take some time to rest your weary bones .
Ypu have been so frightened and worried not knowing what the outcome might be
He actually stood up for the pt, just for a few seconds and has been discharged. It was either hospice of Palm Garden that would accept him. He did not want to go to hospice and Palm Garden, which s rehab that would take him. So he will transferred there tomorrow. I have to give him a chance to see what he can do again. Praying a lot.
Hi, YOU must get some rest NOW,! You have to be fit for when Don comes home again. I know you have been worried, but sounds as if he is on the mend now, so, please, please take care of yourself. What use are you going to be to Don, if you are laid up. EAT NOW,!!! The most important thing in Don's welfare is YOU, I repeat YOU,!!!! So that means you have to direct some time to make sure you are fit and well. None of us do this enough and we all wonder we can't cope and things get on top of us, it's because we forget to rest, eat, get some fresh air, get some me time. None of us can run on stale air or vapours, including you Auddonz!!!!
Sending you lots of love and hugs
Heady
Audrey so glad Don is eating, you must listen to everyone, just rest while Don is in hospital, just go for a coffee, even if it is by yourself, take a book and relax, maybe go and see the doctor and get your self sorted out with the back pain and shoulder pain, wish you better and for Don to carry on eating, and coming home. Big hug to you and I have you in my thoughts. Yvonne xxxxxxxx. Hi Heady are you home from South Africa? Xxxxxxxx
Yvonne, he is going to another rehab facility tomorrow, about the only one that would take him. What is rest, don't know any more. Big hug back.
Heady he has been discharged, actually stood up for the pt for just a few seconds. I asked him if he wanted to go to hospice and he said no and Palm Garden rehab agreed to take. Said they will see what he can do in a week and reevaluate him. I am still a wreck, so very tired but I am eating, just afraid to drive, feel very shaky, prob from not eating enough. Need your love and hugs and back to you. Audrey
Hi Audrey, glad to hear you are now eating, but it's not just one meal though, three square meals a day are needed!!! Make sure you get as much rest as possible, while Don is in this rehab place. Get a sleeping pill from the doctor, pull the curtains, disconnect the phone and sleep!!! You will get through this, I know that seems impossible at the moment, but you will get there! Keep posting, so we can help.
Lots of love
Heady
So sorry to hear things are not going well for you. Once the UTI is better will he be able to come home or is that going to be too much for you? How is your back? We just got back from a little trip to see our grand daughters. Very challenging and tiring for both of us but it was worth it to see the happiness in my husband's eyes. But not sure we will ever be able to do that again. Hope things are going a little better for you by now.
Auddonz in reply to
Nana-j, Sorry for the late reply. Truthfully I have been so exhausted and tired that I have not turned on my computer for a few days. Just want to crawl into bed. My back still lousy along with my legs. Just what I need now. They are planning at the rehab for the month, or so they think. That is upsetting him and me. The VA will evaluate him and if he meets there criteria they will take care of everything. Fingers and toes and everything else crossed.
once he settles into the rehab u might he will get stronger , I do hope so . like everyone say you try and rest for a while , At least it will help your back and neck . it did help mine at one time when John was in hospital although that's not good at all at the moment for me . are you a belt get som massage , you might find that a big help . If he is standing or bearing a little weight they might arraign for some aids which he can use ,
try something new for yourself for a few days .
at home don't try and keep all the house clean in one go . it doesn't work O will even do half a room at a time . That way Most of it gets cleaned eventually .
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