good morning everyone, I've been inthe hospital again with my LO ,we were in the emergency room for 6 hours no meds no communication and a vvery angry husband. by the time they admmited him it took seven people to hold him down. I've been married to him for 42 years and never ever heard the language that cme out of his mouth and the fighting whew!!! we finally sedated him and the journey began , lots of testing , the only thing we could come up with he has started to asperarate and has something called Dysphagia. also 3 drs. want to call in Hospice. so after 6 days in the hospital we were released last night at 9 pm.Let me know if any one else has experienced this new complication . I have to thicken all his meals in order for him to eat. they also had to give him med. for low blood pressure it was 60/31 thats the reason he was passing out . thanks
Golly, what an ordeal! I dont' know about these things. Dysphagia. So liquids get down the wrong pipe? I do hope the meds and thickening the food will help.. I'm sure others here know much more.. But glad you're home at least. Whew! Hope you can get some rest.
I haven't had experience with the Dysphagia, but have had experience with the emergency and feel they are ill equipped to deal with Alzheimers patients. My DH also had a night like yours with the same behaviors, but they had a very difficult time sedating him and all the things they tried only made him worse. He did get admitted after all that (just for the sake of a cat scan that he did not really need). I am sorry to say the experience brought a severe decline for him. I am sorry you guys had to go through such an awful experience - hopefully your DH does not remember it so much and he does get his blood pressure and Dysphagia under control. You are in my thoughts and prayers.
Dysphagia is a swallowing disorder- Copy and paste this link for more detailed information. http://www.asha.org/public/speech/swallowing/SwallowingAdults.htm
In AD patients, I do not believe that therapy is indicated, as mentioned on that site, because when an ability is lost due to AD, it generally cannot be regained.
Another link - http://psychservices.psychiatryonline.org/cgi/content/full/56/2/139- "However, in end-stage Alzheimer's disease, dysphagia is common and can be a significant challenge to clinicians and caregivers (23). Individuals in this stage may simply forget how to eat, or a loss of brain cells may cause impairment of the swallowing mechanisms. Some patients with end-stage Alzheimer's disease are apathetic and have no interest in eating at all. Many patients in this stage may need assistance with much cueing or total feeding. Choking can be prevented by avoiding thin liquids, giving boluses of food with sufficient moisture, and keeping patients in a sitting position (24)."
Hope this helps you understand the situation a little better.
nanapapa, are you going to follow the doctors' advice and call in hospice? They can be very, very helpful, to your husband and to you. AD patients can go on hospice long before patients with other types of illnesses, although many caregivers don't realize that.
Nanapapa, my advice to you would be to get hospice on board. The swallowing difficulties may lead to the aspiration of food or drink and a pneumonia can occur. This is what happened to my husband. You can buy the thickener at any drug store and you will soon figure out the correct mixture amount. The hospice staff will be able to help you with all of this.
I know what a bolus is in relation to giraffes (at the zoo where I volunteer when I can) - it's their cud. WHAT is it in relation to people? I mean, do you get one on the aisle with Ensure?
Thank you all for your thinking of us lately if I did not have you all I probably would have gone a little mad. Hospice is coming to day to talk to us. My daughters want to be here and I encourage it I may get caught up in the moment and not here everything I need to . So 3 sets of ears and questions will be better. My LO seemed to eat a little better yesterday so that is one good thing.
I have not had to deal with thickening my LO's food yet but I have heard the thickening stuff you can buy tastes very bad. Bluedaze, your suggestion of thickening with instant mashed potatoes sounds like a wonderful suggestion. It would taste much better and so the LO would be more likely to eat. I will make a point to remember that one as I'm thinking I'll need to know that before too long. This site is The Best because all of you know what is going on and what it feels like.
nanapapa - Something I didn't know is that lowering blood pressure can indicate the end is near. Hospice will be able to address that for you. The booklet the Hospice provided for me was entitled, "Gone From my Sight". You can look it up on line and see what you think. It definitely seems like the time for a Hospice evaluation. Love to you.
Sometimes, you can thicken things without adding anything -- freeze or partially freeze protein shakes, for example, and spoon-feed. In addition to the instant potatoes (and some brands are positively tasteless, if you ask me .... yech), people have suggested adding baby cereals such as rice or oatmeal, or small pastas. Or try making smoothies in the blender with yogurt or pudding.
Another site I saw said:
Some speech/swallowing therapists recommend giving the person who is frequently aspirating fluids only thickened liquids. Sometimes thickening liquids prevents aspiration. Other times this technique will not work, and since the thickened liquids are thickened with starches and sugars, inhaling these substances into the lungs provides a perfect medium for bacterial growth, with the resultant increased potential to develop aspiration pneumonia. In these situations, it is more appropriate to give fluids that will be the least likely to cause bacterial growth (tea, water, weak decaffeinated coffee) rather than to continue with thickened liquids.
Sunshyne, good comments, but you have to be careful with the thin liquids...those seem to be the ones that cause the choking when the swallow reflex is compromised. I would imagine each case is different, but that is what I observed with my husband and others in NH and other care settings.
My mother recently passed away from pneumonia caused by dysphagia. Similar to AD, her swallowing muscles no longer functioned correctly but, in her case, this was caused by an autoimmune disease. My mother was not experiencing choking but small amounts of liquid were slipping into her lungs. Oftentimes the patient may not even realize they are aspirating. They can even aspirate saliva and bacterial pneumonia can result. As we were told in the hospital, she was on the slippery slope and if she recovered from this bout there would undoubtably be another since her disease was progressive. She did die of pneumonia and slipped away in her sleep which was a blessing. She was very peaceful prior to her death. The hospital chaplain comforted us with the the information that pneumonia is called the old man's friend. Pneumonia left untreated, "the sufferer often lapses into a state of reduced consciousness, slipping peacefully away in their sleep, giving a dignified end to a period of often considerable suffering."
So for those of you considering not treating pneumonia of your LO, this may give you some comfort that it may be a very humane choice.
well, Hospice yesterdayand sign us up and was ever so kind . I started to panic about an hour before thinking maybe I'm doing the wrong thing .... but after talking to them I felt much better. frand I recieved the book you were talking about from them .... and I did buy instant mashed potatos ,for stews and soups don't think it would do to well in drinks.thank you all for the great advise.. but I do have another question???? Yesterday about sundown my LO went to the bathroom and just stood there, I wentin to help and ask what was wrong he said he could not find it , he was standing right next to the tolet... he started to cry I told him it was OK it was just the light in there...any one else experience this with there LO ?????
Nanapapa, cant find 'it', well this could mean what he 'uses to pee-ie- go to the bathroom-.:)not the bathroom itself. i find in the early wee hrs at bathroom, DH can be more confused and cant find 'it' to go, i usually start pulling out his top and show him his underpants and then he 'remembers' where it is. -plus a good nitelite that offers lighting and stays on all nite, is better for DH instead of turning on a an overhead one with glare after deep sleep. it breaks your heart to hear them in anguish, i know, hugs to you and your DH. divvi
Nanapapa, what color is your bathroom rug? Is it close to the toilet? Sometimes dark colors cause problems with dementia patients especially in late stages.