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maral77

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Everything posted by maral77

  1. A little something to think about

    My DH always answers the question "How are you today Al? With "I am fit as a fiddle!!!" Even if he is having a bad day. Their response is always " Oh so glad you are having a good day." It brings a smile on their face with his comment and it makes him feel good with theirs. Being in a Nursing Home he is asked this every day by nurses, staff and residents.
  2. Big News?

    There has been talk back in the 1800's when it was first discovered. Do not take any stock in it, great if one day they do, but it has taken this long and still nothing. Hopefully one day not in my DH time, that they will crack it and truly find something. So far there is no positive cure.
  3. Ok DH is in a Nursing home as I have posted. His PD is progressing, and is having many falls. Out of bed at night and also tries to stand up from his chair and falls. Beside myself as with Fed and State Laws passed they are not allowed to use mats on the floor, longer rails across the bed, no alarm that would go off when trying to get up or out of bed. They put swim noodle on edge of his mattress and being a big guy he rolled right over them and onto the floor. Now for the chair they put what is like a brake on the back of his chair so if he stands up the chair will not roll away from him but lifts slightly backwards which in turn suppose to make him fall back into the chair. SO has anyone had a loved one where you have had these problems or know of someone. Trying to figure out something where his falls will be less. Any info anyone has would be helpful.
  4. Husband keeps falling need suggestions

    Soft mats are also illegal. I am very aware that I cannot put him in a bubble wrap, I was merely reaching out for maybe something that the NH and myself have overlooked. Apparently not, so he will keep falling and one day I will get the call that he is dead from brain injury or bleeding to death. The falling is due to PD, have talked to many family members who I have met while DH has been in the NH whose loved ones are or were in because of PD. Four of them for fact. Three are no longer with and all three died from falls, the one remaining falls alot also. Not saying everyone with stage 5 will die this way, but odds are no matter how much exercise whatever will fall. Thanks everyone and I will leave this post. Aware of all the laws, reasons for why safety measures can no longer be in NH so will just pray, keep going in every day and as I did with my dear son who just passed away Aug 4th, I knew he would not outlive me, so therefore I know DH will die as everyone has to but am sure it will be from a fall. As all his vitals and tests otherwise as the nurses and doctors say has vitals and blood work of a 20 year old.
  5. Husband keeps falling need suggestions

    Oh yes he had 21 days of Rehab then thanks for our insurance and Medicare no longer, but also found out now that with his doctors prescription that it is crucial he starts it once again, that it will. He has to have a "Speech/Swallow therapist" so when we go will request the full.
  6. Husband keeps falling need suggestions

    Thanks Linda guess everyone else has been lucky and have never had this problem. I did find out that with his doctors prescription to have a half rail put on his bed the Nursing home has to do so. I understand and everyone I talked to and called and asked said the long rails are not allowed. He goes on the 2nd to see his neurologist so will go from there.
  7. Update on DH

    Just another update on DH. He had a fantastic Labor Day weekend. I brought him home for the day and he sat outside on the deck that my dear son built him the last time he visited us. This son passed away August 4th, and I am in deep grieving. But it was so peaceful sitting outside and I knew my son was looking down so pleased that his PaPa AL was enjoying the deck. On Labor day he had visitors that brought in Pizza and we had a great day telling jokes and laughing. This was at the Nursing home. Tuesday the Nursing home had their first Classic Car show out in the parking lot with about 30 cars. Two of the cars were once my DH. The neighbor now owns them, and with his help he brought them to the show. DH did not know this was going to happen, so he was in tears and so happy when the nurse wheeled him out and the first things he saw was his neighbor and the cars. I just cannot give enough praise and am so happy I chose such a great place for DH to spend the rest of his life. I can tell he is having new symptoms and the Home is right on them and I know they are from Parkinson's as does his doctors and nurses. He all in all is doing real good.
  8. It is Seven Months Today

    Just a brief post cannot believe that is a half year that I decided I could no longer take care of my DH 24/7. It was the most difficult decision that I have ever made. But thanks to God that I did. He loves it, they have something going on every day. Today was Gardening and later everyone came in and had popcorn and lemonade. His PD has remained the same, except one new symptom which is slight drooling which are at times bad, other times not so bad. His speech has gotton much better now he has so many residents and nurses to chat with every day. His tremors come and go. He is in a wheelchair, but everyday they get him up and uses his walker and walks with the nurses. I could go on and on but I am feeling so much better myself, and I go every day for four hours and visit and take part in the afternoon events with him. Alot of the residents look forward to my coming, as so many have no one. So I feel I have found my mission making not only my DH but many of the residents a better day.
  9. It is Seven Months Today

    Well when I had to call 911 for the police to come to get him up off the floor because he fell and I could not begin to do it myself. And this was happening often. Also he no longer could dress or undress himself and he could not even help do this himself in anyway, it was a real strain on me at almost age 80. Had to be fed, could with much difficult get to the bathroom using a walker but had to help him remove his pants etc and help him get sat down on the stool, alot of times we did not make it so meant having to change him. Just many many many things. As I said above he is now in the wheelchair and can stand up and walk a short distance with a walker but the nurses have to hold unto him. It is a difficult decision, but it was hindering my health. Assistant living was no option as he needed 24/7 care.
  10. Symptom increase in the heat???

    My DH cannot tolerate the heat . He is now in a Nursing home which is seven months today. He loves to sit outside. We live in MN. When he was still here at his house, he would zone out when he got over heated. We would have to rush him back into the house, put the fan on and cool him down. We soon found out that heat does indeed affect PD. He worked outdoors a lot, also was a Pipefitter at the UofM and worked down in the tunnels which were extremely hot. Never bothered him and he retired at age 65. Five years later he was told he had PD. So now when it is anything over 80 degrees with humidity he knows he cannot go out. The Nursing home is aware of this, and also have three other residents there with PD that react the same.
  11. For caregivers only

    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.
  12. Professional caregivers?

    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.
  13. Sinemet & Eating Meals

    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.
  14. 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.
  15. Drinking Glasses

    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.
  16. How do you tell people that you have PD?

    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.
  17. Update

    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.
  18. Update

    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.
  19. Quality of life as it pertains to Parkinson's

    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.
  20. Constipation- best time to go

    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.
  21. Update on my husband

    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.
  22. Prayers for DH

    My DH was taken by ambulance yesterday and is in the hospital with at this time not sure if it is a Stroke or progression of PD. Considering his symptoms are the same. He was sitting in his chair and suddenly said he felt funny. His mouth drooped and sag and eyelids same, speech became worse. Could not stand completely locked on right side. Confused and really did not know even where he was. They went with him having a stroke in ER was admitted and will find out more this morning when I go in and see the doctor and neurologist.
  23. Prayers for DH

    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.
  24. Prayers for DH

    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.
  25. Prayers for DH

    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.
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