I did look for another discussion topic that explored this phase, but didn't seem to find quite the same circumstances shared by other members. And I receive so much help from reading the message boards and occasionally surfacing a question here. My DH has been in residential facility since late December after a fall--age 57. He is in a wheel chair/mobility issues, and does deal with myoclonus. I/home helpers had been feeding him since August of 2012, but now he is beginning to lose weight on a weekly basis and the doctor is concerned. Basically he forgets to open his mouth, is now occasionally storing food, and needs to be prodded. So it takes alot of time for him to finish and/or eat what he should. I visit during meal time and feed him, so that I can observe too, and do take the time with him. They called in a speech therapist to monitor him, and so far he's not having swallowing issues, but they'll keep an eye on him. So my question....is there anyone who has faced this, and how long did this last until the swallowing issues began. I have read so much on this topic, but would appreciate info from those who have walked through this phase. My husband can only speak gibberish and occasional words, but knows who I am. The thoughts of decisions to come in the future are weighing heavy on my mind. Thanks so much.
adaigo, do they give him baby food or do they try to puree their regular menu into what they refer to as mechanically soft? I have found the the read baby food, some it comes in a squeeze tube now, to be the easiest to use. Also ask them to get you some Kanna Banna flakes. you can reconsitute it into water or milk to the desire thickness. It is easy for them to move off of the spoon or thru a straw. I am sorry that you are going thru this. It is great that you are there to monitor the feeding. It infuriates me to see some patients left to fed themselves and they just sit there and stare at the tray with no a clue as to what to do. Welcome to our little family.
We're coming to this. My wife is in a similar state and also EOAD. She has to be fed and the food is now precut to smaller pieces so there's less to chew and swallowing too soon won't create potential blockage. We will go to the liquid state when we have to. Now we have to help clean her mouth after eating because she doesn't realize she was food in the pockets of her mouth.
The decision you speak of weighs very heavily on my mind. I've wrestled with this deeply and will not prolong her through feeding tubes when the time comes. There is no prospect for her but more than that, by continuing her like that I believe I open a path to an even worse way to go where real pain and suffering may be involved where she has no way to communicate what the pain is or where and it will take trips to emergency to find out. We've already done that twice and one was a yeast infection and the other went away unexplained.
The kindest thing I can hope for my 61 year old wife who has suffered from this for 7 years already is that she suddenly passes from a massive stroke or some sudden critical failure. They have healthy bodies and are generally stronger than they look. My wife has a vice grip now I've never known before.
thank you adagio for bringing this up, though of course I am sorry for the sadness you feel with it all, and that your dh has to go through it.
My guy is 64, two and a half years in. He had a very swift decline and is now in an Adult Foster home. He lives in a wheelchair though he can still stand up with help, for a moment.
Mainly he cannot feed himself as his hands shake so bad. However I have noticed he seems to be choking more, and he has lost some weight. He also looks healthy though his legs and arms are starting to change, from not using them.
I just chimed in cause my heart is sore with this issue too. But not as serious or far along as yours adagio. I send love to you.
adagio I have been dealing with the loss of chewing and swallowing for some time now as well. DH has been on hospice for a long time and he has also lost muscle mass and lots of pounds due to bedridden and inablility to swallow lots of foods. soft diet, oatmeals, soft cereal, mashed fruits, macncheese, anything softly pureed is much easier to get down. and I use usually crushed fruit with its juices after each bite to help him initiate the swallowing. he tends to also pocket the food and lose interest if there isn't something sweet to motivate the taste buds. its working well. fruit cocktail mashed with juices or pureed baby fruits with honey, work especially well. it never fails to stimulate him to swallow the mouthful of food hes hoarding in his cheek.:) there isn't much else to do but give nutrional drinks in shakes icecream and things they will drink to sustain caloric intake enough to survive. pediatyle in liquid also helps maintain electrolytes if they are dehydrating. its an ongoing battle. not sure how long this can last before they truly forget to swallow. its been over a year since DH started this in earnest, eventually aspiration may follow once they get further along. sorry to hear you are having the same issues. we try to find what works for each of our spouses by experience. divvi
Thank you for your advice and ideas for spurring my DH on to eat and making it more productive and easier for him. I do feel that if I can get in the NH for at least one mealtime every other day after work and on the weekends, then I can monitor and also take the time he needs to get nutrition. When he first was diagnosed in 2008, I had no idea that we would be dealing with this....how clueless I was to the plight of these dear ones who suffer with this disease. I sense in all of your responses that we are all struggling with similar issues at this point. I am so sorry. I pray as well that these decisions will not present themselves and that my husband will be spared the even more difficult days ahead. Even with my supportive family and friends, no one really understands the emotional toll this takes on the caregivers/spouses. But I know that you all do. Thanks again.
adagio, I am sorry you are facing this dilemma. I am glad they found no swallowing issues. Lynn has been on a pureed diet since 2009, still he has no swallowing issues. Lynn's main reason for being on the pureed food is that he will spit out anything that is lumpy or gritty, so basically everything! With the smooth textured of the pureed foods he doesn't do this and enjoys his meals. It isn't baby food, it is the regular foods on the menu simply pureed.
Keep in mind there are sometimes reasons they don't want to eat. A sore throat and constipation have been things we have dealt with.
As you have already found out, it takes a long time to feed our loved ones in the later stages. When you aren't there, is he assisted? I only ask because I have seen first hand with other residents how much better they eat when they are assisted or just have someone there to talk with and prompt them. Lynn has to be fed but he can drink on his own. That doesn't mean he knows enough to drink though, so he needs guidance.
Do they have your DH on any nutritional supplements? Even though with the Marinol Lynn has gained 35 lbs and eats very well now, they have still kept him on the Mighty Shakes and Magic cup. When he was losing weight and down to a shocking 91 pounds they also gave him TwoCal HN.
I also found that for Lynn the metal spoon was too overwhelming for him. I am not sure if he didn't like the feel of it in his mouth or if it was just too big? We switched his spoon to a small coated one and he ate better instantly. Also, because it does take so long to feed, the foods get cold. I use a baby food heater to keep them warm, or you can just microwave. One other thing, it is helpful to "prime" before eating. With Lynn if he doesn't open his mouth right away (even with me opening my mouth mimicking how to eat) I give him a sip of his drink. I am not sure why this works, but for Lynn it does. And if that doesn't work, start with dessert :) Often times the food tastes bitter to them, try adding brown sugar or honey, or a bit of ice cream on the tip of the spoon. Just some ideas that worked for us.
Thank you to each one who shared their experiences and suggestions. He is eating better, if we take a lot of time and employ some of the 'tricks' you all suggested. Sometimes, he needs a rest and then we go back at it again. More to come!
Lloyd went through a phase where I had to remind him to chew and swallow. I had been feeding him some in 2010, but had to feed him everything by 2011 and until he passed February of this year. He never got to the point that he choked. Then the last 5 days I could get nothing in him - not food or liquids so I just moistened his mouth with sponge swabs to make him more comfortable.