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maral77

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maral77 last won the day on September 10 2015

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  1. In some aspects I have been there, my DH is now in a Nursing home. The horrible stories I could tell you before I finally had to admit I could no longer care for him, and for many reasons there was no other objects. I am still in a stage where I feel guilty for giving up so to speak. I still wake up thinking I have heard him fall out of bed. Everyone tells me how I did all I could and that DH is in a better place. I do agree that he is in a marvelous facility that love him to pieces and is taken care of so well. I go to visit almost every afternoon, when I leave I cry all the way home. He is in the beginning of Stage 5 but not bedridden, is in a wheelchair, and able to still get up with much help to do short walks with the walker. He has some discomfort with pain, but so far with the Facility getting him to stand and do the brief walk and other sitting in wheelchair leg exercise it is not to bad. I know it will get worse. I cherish every day when I go in to see him, some days he cannot speak at all, or if he does no way can I understand him. Then when he says he has gone to the bar lol, slept at someones house etc etc I try to find humor to myself knowing this is all not true. He still eats good, has loss alot of weight. his BP goes up and down, and a few other issues they monitor and watch daily. My doctor told me.. your DH has PD on his right side which is reaching up to Heaven, on his left side is the DH you know and remember. Cherish the left side when he is talking good etc. I try to hang onto that. I do not know exactly but having been DH caretaker for 13 years and the last two years being where I just wanted to throw up my hands and walk out.. I can feel for you. My emotions come and go and DH has been in the Facility only 4 months.
  2. I did alot of research in both the Assistant Living and having in home care before I decided to place DH in the Nursing Home. Caretaking at our home was out... he needed 24/7 care in everything, and there was no way we could house a 24/7 caretaker, so that would still have left me with if he fell, getting to bathroom, eating etc etc. Assistant Living also would not have handled all his needs, and for myself I did not need any assistants and was not ready to pick up and sell everything when he would have been in the Memory part of the facility and that just was a no way. I am so glad he is now getting 24 hour care, everyone loves him, I go every day and have such a relief that he is in loving and caring hands. He is also liking it, it took alittle time but although he cannot talk where anyone can understand him, he seems to be able to communicate so that the nurses all know his needs, and he waves and smiles at the residents as he buzzes himself around the facility. Almost every thing like getting his hair cut, nails trim, doctors except for dentist comes right to the facility. So I do not have to worry about getting him out to most of his appointments. The few I do they have their van that they get him to the appointments and I meet them. It is the best thing I did, and wish I would have done it two years ago. It would have been much less stress on me and most certainly a better qualified life for DH.
  3. My DH has been taking Sinimet and Rivastigmine for a very long time. For the Sinimet his neurologist said he could take it with or without food and I just googles and everything I read said the same/ Nothing on his bottle to say otherwise. NOW with the Rivastigmine YES that says and so does his neurologist say to take WITH food.
  4. Well your father sounds like he is in about the same stage as my DH. My DH is now in a Health Care facility. He also does not have any interest in anything, with the progression of LBD he no longer can read but does enjoy looking at pictures. He also has had surgery for cataracts on both eyes and his last exam his eyes tested good but with the Parkinson's his perception of where things really are is off. No cure for that. I tired all the above he could not even begin to color in a book, puzzles confused him and he had no idea. They have man activities at the Center and he always says NO when they ask him if he would like to join in. He does enjoy music and they have every week two days where people come in and play and sing. He will join and listen to the music. It is very difficult, I have tried a simple game of Tic Tac Toe and he got all confused. I feel for you, his nuerologist said he is at the stage entering stage 5 and with LBD it will progress even furthur. Right now he knows me and everyone that comes to visit him he still knows. But decisions, etc no longer. I am still seeking things and trying things but pretty much in vain. Good luck and as I said I know where you are.
  5. My DH is now in a Health Center and they use what is called Nosey cups/glasses. The Nosey Cup is an adapted drinking cup with a u-shaped cut out on one side. The special cut out provides space for the nose, allowing the user to tilt the cup for drinking without bending the neck or tilting the head. They are dishwashing safe, lightweight, and the best thing, I had never heard of them and had to ask what they were called. They use only these for the Parkinson's residence there.
  6. Why keep it a secret? PD is nothing to be a shame of and in my DH case we told family and friends right away. When out in public and people would be looking at him as if he was drunk or other symptoms I would immediately let them know. In most cases there was never self pity but they wanted to know more about PD as it is a disease that seems to be hidden and many people have no clue.
  7. Thank you everyone for the kind remarks and encouragement. After reading all your remarks I realized that yes, I am still his caretaker. As I tried to be up on everything possible with Parkinson's, I am now finding myself everyday checking in with his nurses. I make sure his medication was given on time, what his vitals were. That he is eating, how he slept etc etc. I just want to make sure that all is being done and it always is. I said to the nurses you probably want to run and hide when you see me.. lol but they are so nice and assure me NO you are a caring person that wants to make sure he is being well taken care of. So again Thank you and I will pop in and give updates.
  8. I have learnt so much since I joined this Foundation. Although I am not a active member, I have posted as a "Caretaker. Which I feel I am no longer. My DH was recently diagnosed that he now has LBD. I always suspected that he did, now we know for sure. So along with all that and the regular Parkinson's symptoms that he has, I no longer was or am able to care for him. He is now in a local Nursing home and is getting all the great care that is needed. I go every afternoon to visit and be with him. He was in Rehab there so when I had to place him there long term, he knew just about everyone. The Rehab was for two months, and during that time he went through many many various tests, which was when it was diagnosed with the LBD. The Rehab ended up with no significant results, the goal was that he could continue using his walker to get around. So he is now in a wheelchair. The speech and dementia was progressed to where there is not much to be done. Some days I can still understand what he is saying, however it usually is illusions, seeing things not there etc. He is slowly adjusting, can take part in afew activities but very limited. Most days he is confused to why he is where he is. I cherish the better days, however, they are becoming less. There comes a time when one must think not only for the patient but for themselves. He can maintain a much better quality of life now where he is, and I can slowly get myself back to health so I can continue to be by his side.
  9. My DH also sleeps alot. Goes to bed at 9 or little before. Does not wake or wants to get up until 8 or 8:30. By 10 he usually has what little breakfast he eats done and back to sleep in his chair. During the few waking moments I get him up to do his exercises, walk and bathroom and then back to sleep. Reality is the sleep is a progression of PD. I have read up on all the symptoms directly from this foundation so I do not have my head in the sand and realize there is not anything left to do besides what we are doing, his medication, proper diet and his exercises. Granted it is difficult to see the changes and different symptoms progressing almost on a daily basis. i cherish his ON days, cope with his OFF days, and life goes on.
  10. Did not know there was a set time, my DH sometimes goes after breakfast and then there is times when it is later. I am just happy when he goes. Rarely goes on his own but needs a laxative. Now he is in Rehab and they said he sometimes goes without help, but alot of times they have to give him something. Just all part of this PD.
  11. In a previous post I posted that my DH was in Rehab. He has improved but still a lot of Rehab yet to go. He has been able to get himself up from the wheelchair, grab the walker and has been walking up/down the hallways. He now does feed himself, and yesterday showed me that he can get himself out of the wheelchair and into bed. All signs of mass improvement. As he was unable to do any of this two weeks ago. But still a lot of PT to be done. Now nothing to do with DH or Parkinson's but my oldest son who has COPD is also in ICU in Florida, and I long distance have to give permission for procedure's that they have to give him, as he is unable to speak and is sedated. SO my hands are really up and above. So once again I ask for support, prayer's and comforting words. So far I have found out that I am a very strong woman. Thank you for allowing me to just maybe vent alittle.
  12. At this point I have to find the simple things to laugh about. His facial expressions are changing and the neurologist said no doubt will change even more. He tried to talk to his roommate and of course the roommate could not understand him, but the man was so nice he just pretended that he understood and was so nice. He said Al and I will be along just great. That poor guy just had bowel cancer surgery, on oxygen and was in so much pain but he was so kind and we chatted for along time.
  13. Yes I wonder that also. I try asking him what it is he is picking up and I get nothing. GO figure. He hands it to me and says Hold this of course nothing there but ok I hold out my hand and he pretends to put the invisible in my hand and then tells me Don't drop it. Sometimes I just have to laugh.
  14. DH is now in the Rehab Center. He was in a wheelchair when I came to visit him and slowly going down the hall by himself. Still needs assistance in eating, but eating alittle more than earlier. When he is overly tired and had his first PT he was doing the seeing things on the floor and trying to pick it up etc. But use to that as he does that at home. So time will tell day by day and I hope I can see improvement each day, but then it can turn the other way just as quick. If it was not for PD he is in perfect health otherwise at age 86.
  15. Thank you everyone. When I posted last night they were going with the light Stroke as he had all the symptoms. Test results all came back that he did not have a stroke but was the progression of PD. He was able with belt and three nurses to stand and take afew steps with the walker today, which he was not able to do yesterday when the EMT were here. It sounds like he will be going into a Short Term Rehab center for physical therephy when they release him. Not sure just how long he will remain in the hospital. Will keep you all up to date. Sorry for this remark BUT dam this disease!!!!!!