Guest guest Posted April 21, 2011 Report Share Posted April 21, 2011 , I would check and see if your sister needs to be hydrated. Mom had lots of trouble because she was in a NH and they didn't give her enough liquids. Hugs, Donna R Cared for Mom 3 years in my home and the last year at a nh. She passed away from LBD in 2002. Where are we? Just wanted to let everyone how my sister, is doing. Not so good. She can't walk anymore, maybe a couple of steps with a person on each side. She says she is in constant pain with her neck, back, legs. About once or twice a week she will eat a half way decent meal, the other days very little. She sleeps a lot. When she is awake she is constantly calling out for someone, usually all the members of our family. She still knows us and at times can carry on a very short conversation. We do have hospice and they are wonderful. They are going to try to get some volunteers to come sit with her during the day, since we all work. She has a lot of problems with constipation, usually has to have an enema once a week. She's averaging a UTI about once a month. She's been on antibiotics for over a week for a UTI, but sometimes she'll feel the need to go to the bathroom and when we get her there she can't go, get her back to bed or her chair and she wants to go again. When we take her to the bathroom, and it takes two people, she usually goes semi-unconscious on us. She gets a blank stare, can't talk and sometimes heavy breathing almost a snoring sound. They have told us this is a drop in oxygen levels or blood pressure. When we lay her down, she comes back around. The past week it seems it is taking a little longer for her to come around. She says she wants to go to heaven. As a family, we don't want her to suffer anymore. I know everyone is different, but does anyone know where we are in this awful disease? Thanks Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 22, 2011 Report Share Posted April 22, 2011 Hi , My Dad has LBD and I work as an RN with a hospice company. All of my patients are located in a nursing home. My suggestions would be to have your hosipce nurse start oxygen on her for comfort measures. She needs an oxygen concentrator for her room and she needs portable tanks (supplied by the nursing home) attached to the back of a wheelchair (special attachment). The wheelchair and oxygen should be paid by the hospice company. If you can find someone to come and assist her with her meals and make sure she has plenty of fluid, that would be great. Hospice has to rely on the volunteers' schedule, not your mom's schedule. It is great to have volunteers, but they are usually there to visit, not to assist with meals or make sure the individual has her oxygen on and to watch and see if the tank is not EMPTY. This has happened to one of my patients everyday. I'm there all the time, so I check, but the nurses in the facility have other things to attend to, such as giving meds, etc. The CNAS will put her back into bed and leave the portable on and it runs out. I recently had to write orders in the nursing home for all of this. It is written in their care plans that I will be able to write orders for my patients. You are doing all that you can do and she seems to be declining for sure. All that is needed is more comfort measures. I hope this helps. Most sincerely, daughter of Ralph, 81 soon to be 82 May 4th, with LBD Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 2, 2011 Report Share Posted May 2, 2011 Hi , We are about the same place perhaps but I don't know where it is in the general progression of this disease except " end stage " . How long that can last is anyone's guess but this is where the UTIs and aspiration pneumonia are a big problem and can easily be the end. The oxygen thing - I agree with what wrote about getting oxygen for comfort measures. I have my mil getting oxygen due to sleep apnea (also common with this) because I insisted on an overnight pulse oxymetry test that showed the numerous desaturation events. This was a year ago. Medicare covers the oxygen concentrator and various lines. You can get a 50 foot hose for the oxygen concentrator which may mean you don't need tanks. It's also nice at night so the thing doesn't have to be in the bedroom. I put my mother's in her bathroom with the door close and the noise doesn't keep her awake. Much better than dealing with tanks and easier and safer too. We also have a portable concentrator for when we need to go to the doctor. Medicare covers that as well. The 50 foot extension hoses connect to a 7 foot canula line with a plastic connector. Medicare will cover Four 7-foot canulas, Two connectors and Two 50' hoses a month. Change the canula line every week and the connector and extension hose every two weeks. We do ours on Mondays. Clean the canula at least once a day - I use antibacterial hand wipes (wet ones) and let it air dry before putting it back on. She is on 2.5 liters and we have not had the fainting since she's been on it and she feel better and doesn't have so many gasping for air episodes wither. This seems to be a pretty well known issue with LBD (well at least my caregivers know it well, having to carefully lie their patients down when it happens and wait for them to wake up). As far as fluids I know the battle you are in. My mil is on thickened liquids, semi soft mechanical diet. I am having to make them more and more thick so she doesn't aspirate but at the same time push fluids all day so she will get something. Most days lately I'm lucky to get 2-12oz glasses in her. On good days we can get 4-5 12 oz glasses down. But the less fluid the more possibility of UTIs. The other things we are doing for UTI preventative: Cranberry capsules (Nature's Bounty triple strength Cranberry which has 2000mg fruit) 1 capsule 4x daily to help acidify the urine; D-Mannose (which binds to e coli bacteria and helps decrease those UTI infections - it's also a supplement. She gets 2 tsps a day (we have syrup form called " UT Answer " which is easier for her to manage than another pill. ). Estradoil cream (RX) which is applied every morning around the urethra to balance the hormones which greatly helps reduce cell breakdown - a big cause of UTIs in post menopausal women. Taking her to the bathroom every 2 hours whether she needs it or not and changing frequently. Yogurt with active cultures every day, " Pearls " every day and also a low dose preventative antibiotic for UTI's. This is keeping things down to a minimum but we are getting flare-ups of a UTI about every 6 weeks and are told that they are likely chronic and could easily be the end of her at some time. The Home health Rn's have been trying to prepare us for that but not always in the most diplomatic manners. Today my mil keeps asking me if she's dying. I tell her not today. She asks me, " Do I have a chance? " I ask what she wants - does she want to live a long time? She laughs and says no but I want to live. So I ask, Do you want to live to see your daughter on your birthday? She tells me yes she wants to live that long. Well that's only 5 weeks away so I tell her how long and keep trying to eat and drink and sleep and we'll do all we can - but all we can do is our best. So she feels somewhat comforted. Then she asks all over again in a few minutes because her short term memory is completely shot. I sure hope this will help somehow. Dorothy Where are we? Just wanted to let everyone how my sister, is doing. Not so good. She can't walk anymore, maybe a couple of steps with a person on each side. She says she is in constant pain with her neck, back, legs. About once or twice a week she will eat a half way decent meal, the other days very little. She sleeps a lot. When she is awake she is constantly calling out for someone, usually all the members of our family. She still knows us and at times can carry on a very short conversation. We do have hospice and they are wonderful. They are going to try to get some volunteers to come sit with her during the day, since we all work. She has a lot of problems with constipation, usually has to have an enema once a week. She's averaging a UTI about once a month. She's been on antibiotics for over a week for a UTI, but sometimes she'll feel the need to go to the bathroom and when we get her there she can't go, get her back to bed or her chair and she wants to go again. When we take her to the bathroom, and it takes two people, she usually goes semi-unconscious on us. She gets a blank stare, can't talk and sometimes heavy breathing almost a snoring sound. They have told us this is a drop in oxygen levels or blood pressure. When we lay her down, she comes back around. The past week it seems it is taking a little longer for her to come around. She says she wants to go to heaven. As a family, we don't want her to suffer anymore. I know everyone is different, but does anyone know where we are in this awful disease? Thanks Quote Link to comment Share on other sites More sharing options...
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