I'm so unsure of myself right now and also feeling I would be putting Paul in a short term rehab facility so I would have a break not to deal with it all. You see, his last fall 2 weeks ago landed him in the hospital with fractured ribs. He was sent to a rehab. He lasted three days. He was kept in bed a lot because they were afraid of a fall and just not that much therapy. Maybe I didn't give the place a chance, but I caved and signed him out . His home coming wasn't too great. Fell twice getting out of bed cause that damn diaper was soaked and he couldn't just wait for me to come around the bed and help him...Thursday night he spiked a raging fever and he couldn't get his legs to move at all. I called an ambulance and now he's back in the hospital with a UTI. So the doctor is talking a rehab again and Paul doesn't want to go. He said to me that he knew he would be getting worse in a year and why not let him come home. It's been progressing quickly I think too. My thoughts are that his legs are strong now, bladder infection is better and what rehabilitation can they do for him? His problem is with unsteadiness and weakness in the right hand and leg which I also know pt and ot won't help much. He wants to be home. I do and I don't want him home. I hate this.that no therapy could or will help that. Close people around me tell me I'm wrong to have taken him out the first time and now I should have him go in again. Im trying to do the best thing for both of us. Rehab is covered by my health insurance but not to get someone in the house. insurance covers pt and ot in the home too. Should we get a hospital bed? Thanks. I know I'm talking to people that get me.
Beautiful fall day in New Jersey, but too hot.
Fondly,
Joan
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Lacey23
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Wow, I would have to say take the opportunity to give him some therapy and yourself a break. My husband went to physical therapy and was told he would do best in a rehab facility , but it was not available to him unless he was first hospitalized .
Maybe with your husband feeling stronger now he will agree to get some therapy to keep him strong so he can come home and stay home.
Good luck to you. I know it can be a hard decision to make. Sometimes family and friends who are a little removed can be helpful . It is obvious you want what is best for him
It's called tough love and I'm not good at that I know he'd have a mental decline in a rehab because they only do about an hour of therapy a day and there's a lot of downtime that's why I had to sign him out of the last one because he was sitting in a wheelchair just staring at the walls somehow all these stages are just so painful I actually amazed myself that I'm so strong. one day at a time so they say thanks Joan
Joan, I feel I could have said the same words you posted. You are in the same situation as I am with my husband, Jim who just turned 74. He's in a nursing home today, doing OT and PT and Speech therapy after another UTI. This is the second time around for him and it's "getting old". I try not to think of what tomorrow brings as you can't plan a thing because it will change. This PSP SUCKS. Just letting you know that there are many people who support us and it's a good feeling - from Joyce in Minnesota.
Thanks Joyce. Is he staying there? I can see all the stages beginning to happen and I'm so scared. I wan t him to be comfortable. But the toll on me is awful.
Lacey23, he is only at the nursing home a short while. He is receiving therapy and he will have reached his level on Wednesday of this coming week and might get to come home then. The problem is he has choking with his meals. In the dining room with others at the nursing home, I heard someone say that he shouldn't cough when eating because the residents are alarmed and feel he is going to choke. Well DAH, all the residents cough at one time or another too while eating.
I let that one slip through. I have more important things to worry about. I am scared too because we don't know what to expect, especially when he returns home. My children are so concerned about him coming home and I will become worn out just taking care of him. We did have Visiting Angels in twice a week for 3 hours each day, which helps so much. We will continue that when he gets home.
I really feel that this site has been so useful to me in dealing with PSP (poisoning special people) - - that's my definition of this crappy disease.
I hope your husband's homecoming goes well for you the choking must be terrible my husband is coughing a lot and it seems like a lot of mucus all the time but not with eating at this point what do you do when he chokes like that is this something that you have to do to help?
There isn't much I can do about his choking except rub his back and try to console him so he can feel my contact and let him get through it. It usually sounds worse than it is. I worry about him aspirating food into his lungs. I go to the nursing home during the lunch and the dinner hour to feed him. He will only let me feed him. He says the other CNAs don't know how - ya right Jim. I wish I knew which "stage" we are in. Do you have that knowledge with your husband? How long has he been with PSP? Have a good morning wherever you live. It's going to be a cool sunny day here in Minnesota.
I really don't know. I feel we still have time so we should be enjoying ourselves. Pretty hard being in and out of the hospital. Two years whe the initial balance thing started. Official diagnosis Jan 17. Hoping he stabilizes, but you just don't know.
Hi Lacey23, How are things going with you? My husband has decided that he wants a PEG tube so he doesn't choke while eating or drinking. It's getting really bad. We see the Swallow Doctor on Monday the 23rd and ask about putting one in the stomach. He is loosing weight everyday, it's sad to watch him suffer. Was a beautiful day here in Minnesota - have a good night. Joyce
When will your husband get the PEG tube? How do you feel about it? Things here are pretty bad. There needs to be a time for me...all these years of raising the children, dealing with the ups and downs of life, and now this awful progression.
How are your children dealing with all of this? Take care.
Joan, After talking to the doctor sometime I would think. I am going to insist that she expedite the order for it as soon as possible. At first both of us did not want to have a feeding tube if we were say like in a coma or something. But now that he has the PSP and can't swallow, he has changed his mind. I feel he has to make that decision and whatever, we (his family) will support this. We've heard about people having them and then removing the PEG at a later date. Don't know if that will happen here though. Once his swallow is gone, it's gone. Our son lives 10 miles away and is coming often. Our daughter is 4 1/2 hours away in Wisconsin. Just phone calls from her and family. Wish she could come but she has had Afib and hospitalized recently. Before the snow starts, I hope she can come over. Sorry to hear you are having a bad day. Talking about it helps. Even just writing to someone lets you vent. That's why I really enjoy this forum. Have a good nite. I hope to do the same. Joyce from Minnesota.
The last two weeks have been like a circus. Oct. 23 started off with just a doctor's appointment to get Jim the PEG tube surgery. We went to the VA Hospital, Jim was put in as in-patient had the PEG tube inserted on the following Wednesday. All went good until I visited him on Thursday and sitting in his room, I started to have chest pains which produced a major heart attack. I was rushed to Emergency and then to have heart surgery. A person never knows from day to day anymore. I am doing fine right now. Jim had to be put into a nursing home, but it's 40 miles away from our home. He is doing okay with feeding tube so that is good. We are waiting for the nursing home in our home town to admit him as soon as possible as my family will not allow him to be at home and the care giver would be me. No Way they Say. It's been a whirlwind couple of weeks. I hope everyone will speak up when you have chest pains. It may save your life. I did mine!!
Just another rant and rave day from Minnesota. Have a good one. Joyce
Oh my God Joyce I am so sorry to hear about your heart attack. with the terrible strain that we're all under 24/7 it just is no I'm not surprised. I hope you can take good care of yourself now best wishes for a speedy recovery. do you know if you left with any heart damage I had breast cancer several years back and the treatment did damage my heart muscle. maybe your message to me is a little bit of a wake-up call for myself. Regards Joan from New Jersey
PSP is a disease without pharmacological treatment. The only thing you can do is counteract the symptoms.
In few words these are my experiences on PSP disease hoping they will be useful :
My wife suffers from PSP. The first symptoms (difficulty speaking as if she had a stone in his mouth and a slight tremor in the ring finger) will be presented in March 2012. The definitive diagnosis was in June 2015 (Difficulty in eye movements).
In my opinion, as long as possible, the best place for a patient PSP is their home. This entails the need for assistants to help the main caregiver and to be able to cope with the considerable expenses that this generates. It also demands a reasonable good health of the caregiver since the management of all the tasks that it carries with it produces a remarkable wear.
In principle, the limit I have set to send the patient to a nursing home is dementia or the need to apply specialized medical care.
The non-strictly medical parameters that the main caregiver must manage:
1) Avoid falls: transfer techniques, seat belt, wheelchairs, anti-bedsores cushions
, to adapt the bathroom, handrails on each side of the bed, articulated bed, plastic wheelchair (type ETAC) special for hygiene and shower, etc.
She has regularly used a wheelchair since June 2016 (Four years after first symptom) . The wheelchair is made in aluminum and is foldable, easily transportable in the trunk of a car .
2) Prevent cold and flu (vaccine could be advisable) to avoid pneumonia.
3) Prevent solids or liquids from reaching the lungs. Add thickeners to drinks. Relatively doughy food and solids in small pieces. Ice cream are well tolerated .
4) Gymnastic tables 6 days a week: passive in bed (Move all major muscles) and active (helped by 1 or 2 people):
Odd days: Go up and down 50 steps
Even days: walk 200-300 m.
Speech therapy exercises and exercises ocular muscles.
5) Socialization. Almost every evening, social activity: cinema, city walk, show, museum, conference, visit grandchildren, snack with friends, etc. After that he needs to take a rest. It is advisable to have holidays in places where the moderate climate allows you to go out on the street and do walks-gymnastics as well as socialize. The transport by car is adapted to take the patient and the wheelchair. Similar Citroen Picasso tall seats are recommended. .
6) Control of palliative medication against depression and insomnia. In our case right now: 1/2 Sertraline-50 at breakfast; 1/2 Sertraline-50 to food; 1 Lorazepan-1mg one hour before dinner.
Drops of tear to the eyes upon request. If you have problems applying the drops "Optrex spray" is an alternative.
7) Communication: There are magnetic letters of scrable (20 x 20mm, if they are bigger, better). We put the letters of the alphabet in a metal tray (may be worth one of the oven) well illuminated and placed at eyes level. She is pointing the letters and another person is writing on a blackboard the letters that she points out. Until now it is the best system.
To say yes or not she uses head movements.
We have a part-time hired person to perform gymnastics, personal hygiene and dressing. Another person lives with us with holiday on weekends free. Those two persons help me a lot regularly and the children help whenever they can. Also the friends of always collaborate.
Each patient seems to have similar symptoms but their appearance, intensity and sequence seems to be specific to each patient.
Various medications have been tried for pain episodes. There have been some side effects such as confusion and daze, especially with opiaceous. Currently when an episode of pain arises we use progressively: Paracetamol, Nolotil in capsules and if the pain is acute Nolotil in glass ampoules. All under medical supervision.
Our plan has been designed and adapted simultaneously by the neurologist and the family doctor. In the small occasional doubts or small urgencies we are guided by a relative who is a doctor.
We found great help information In the comments of the members of this great association -HealthUnlocked- and also the web "CurePSP": psp.org/ has been of big help.
Releasing the caregiver and allowing him / her to have life outside the home as well as to avoid strong or continuous physical and psychic efforts is fundamental. The main caregiver of a patient of PSP is progressively taking charge of the work that did when the disease had not been shown, plus the work done by the patient of PSP, plus the management of the illness and the people who are forming the team of help. One must also look at the health of the main caregiver is and his/her medical history.
The bottom line is that jobs and occupations of the main caregiver grow at the same time as age is going up ..... without an important help is very difficult to carry out without a brutal wear.
From my experience and also from my group of caregivers it is essential to find efficient help that allows areas of freedom and leisure as well as vacation periods for the caregiver, far away from the PSP. At least, a week of holidays each six month is advisable.
No it is when the patient meets definition of terminal illness and has no rehab potential. My husband has CBD and was quickly admitted to hospice home care. Also incontinence and assist with adl are used as admission criteria. Some patients stay in hospice for several years. You do not need a dr referral. At least call them and let them come over and explain their services. If they dont admit at least you will know what is available in the future. Medicare covers 100% if he has that.
Activities of daily living (ADLs) are basic self-care tasks, akin to the kinds of skills that people usually learn in early childhood. They include feeding, toileting, selecting proper attire, grooming, maintaining continence, putting on clothes, Bathing, walking and transferring (such as moving from bed to wheelchair).
Activities of daily living, or ADLs, are often mentioned by geriatric-care professionals in connection with instrumental activities of daily living (IADLs), which are slightly more complex skills.
ADLs can also occasionally be referred to as basic activities of daily living (BADLs).
What are instrumental activities of daily living (IADLs)?
Instrumental activities of daily living (IADLs) are the complex skills needed to successfully live independently. These skills are usually learned during the teenage years and include the following:
•Managing finances
•Handling transportation (driving or navigating public transit)
•Shopping
•Preparing meals
•Using the telephone and other communication devices
•Managing medications
•Housework and basic home maintenance
Together, ADLs and IADLs represent the skills that people usually need to be able to manage in order to live as independent adults.
Doctors, rehabilitation specialists, geriatric social workers, and others in senior care often assess ADLs and IADLs as part of an older person's functional assessment. Difficulty managing IADLs is particularly common in early Alzheimer's and other dementias. Assessing IADLs can help guide a diagnostic evaluation, as well as determine what kind of assistance an older person may need on a day-to-day basis.
Joan. I too am in nj. My fiance is 51 with psp and or cbd. He is still at home....i am 46 and working...he has a good home care aid while i am at work...other than that it is me. His family doesnt want to put any sweat in the game and help him....even one weekend a month....they would rather have him in some home to quote save money. Crazy. I would love to talk more about his symptoms since you are so more or less local!
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The hardest decision
PSP - progressing right along
