For those who care for someone with Parkinson's disease
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I was telling you about my husband's confusion and not knowing me or not comfortable in the house at certain time but not all the time. It's been increasing this past week. I called the MDS nurse and she said to have our doctor do blood tests for possible urinary infection. Evidently it can cause confusion, so I got an appointment with our family doctor this afternoon. The MDS wants to rule out infection before they do anything else. I hope they can get results before Christmas though. I am so glad I decided to call instead of waiting for his next appointment. Have you had any experience with infection causing those symptoms? |
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| Lynnie, uti's are notorious for causing confusion and disorientation and even hallucinations in Parkinson's patients. There have been many posts here in the past regarding infections causing confusion. Hope you get the results quickly and can get started helping your husband out of this fog he's in. |
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My PWP had a UTI a while back. What a catastrophe! ThEY prescribed CITPRO... Yikes! All hell broke loose! The cure was worse than the UTI. eventually, a couple of weeks, he was back on track. A few weeks ago we both caught a cold from our granddaughter. I felt awful for 3-4 days. He was DOWN for 10 days and then another week to recover. INFECTIONS ARE BRUTAL. |
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The doctor has ordered blood tests and urine test to rule out urinary infection. He told me not to put my high hopes that it is infection as some people in the nursing home gets these occasional symptoms. He checked his temperature and it was normal and checked his kidneys for tenderness and it was normal too. He doesn't have any other symptoms for infection so we'll see. If it isn't infection he can give him something to take ease up the hallucinations. He'll call us on Wednesday to see the results and go from there. My brother thinks I should get him on a waiting list for a nursing home as my sister told him about the confusion my husband has. I told him I can still handle him and not to think the worse. He doesn't live with him so naturally he thinks things are worse when a person says he doesn't know me at times. He thinks he is "going down quickly" I know he means well, but it makes me feel worse. I would get help in first before I would subject him to a nursing home. If he only knew how much others of you are handling things much worse than I have to contend with. My husband is normally quiet and only gets upset and mostly cries when he can't do things or he feels that he doesn't know me or that things don't seem normal in the house. Thanks for your support. I don't know what I would do without you people. |
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My husband has had a couple infections that made him very confused and weak. I sure hope your husband gets better soon, and it's just a passing thing. I hate it when people give opinions when they have no idea what your daily life is like. |
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My brother is just concerned about my well being. He doesn't want my health to be ruined. He was sorry that he didn't explain himself very well. He just wants me to be prepared for the future, which I can understand. Right now we have to find out what is causing this confusion. It could be infection but the doctor said not to get my hopes up so we'll see. Did your husband have any signs of the infection like tenderness in the kidneys or problems peeing? My husband doesn't have any problems with going, so I don't know...... |
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Best wishes and prayers for your husband, Lynnie. UTI is difficult for a caregiver to DX because there is usually no fever with that type of infection. You have to go by your own instinct and knowledge of your loved one's usual state to know when something seems out-of-ordinary and suspect UTI. Cipro antibiotic was Very Bad for my Mom as well, but she tolerated cephalexin (Keflex) without a problem. When UTI became more frequent, a urologist prescribed low-dose nitrofurantoin as a prevention every day. Cranberry supplement was helpful as well. |
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It was the doctor who checked my husband and didn't see any signs of UTI but he had blood tests yesterday and urine sample. The lab girl said we probably won't get results today and could take up to a week, so we'll see. It's a busy time around Christmas unfortunately. He just said not to get my hopes up. My sister stayed with my husband yesterday while I did some shopping. |
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| Good luck dear. After two hospitalizations for UTI last spring, I came home from work to find him Sept 4 dehydrated, high temp, barely able to move from not dosing PD Rx twice. Called ambulance believing it was one more UTI and really thorough ER Dr caught an abcess on ball of foot had infected. We are still fighting closing wound after surgery, but mostly because he will not follow instructions not to walk on it. Hell, he goes out to the shop every chance he gets. Hope beyond hope things better for you soon. |
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The doctor didn't call so he couldn't have received the results. Hopefully we hear next week, unless he calls today to tell me what to do. He put in a bad night. First of all we were watching The Christmas Lodge movie and he started to cry. I asked what is wrong and he said it's hard to say, but there was a grandfather that wasn't well and I don't know if he was thinking the same for himself. Our daughter was home and I tried to tell him not to think bad thoughts and he was better eventually. Then when he got to bed he was crying again so I gave him Tylenol to get to sleep, but that only lasted a couple of hour. He kept getting up every 2 hours which didn't help me any. Around 6 he came in the bedroom from the living room where he was last walking around. He said I finally found you. He was looking for me and the outside light was also on. I hope tonight is a better night........ |
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| Sorry Lynnie. Hope the doc comes up with a solution soon. Make sure your husband is well hydrated too. Hope he has a better night. |
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We had a good Christmas and he doesn't seem as confused but family has been around, so he was more wide awake. We'll see how he is when they leave but hopefully we find out on Tuesday or Wednesday the results of the blood tests. Our son-in-law and daughter flipped our mattress which was bothering my husband, so maybe he'll get a better sleep. He also changed some ceiling lights to LED so we won't have to change those for years. It's nice to have family home to do those kind of jobs. The drooling hasn't let up yet, so maybe he'll need a larger dose. They said it would take a week to 10 days and it's almost 9 days now. I'll post when we find out the results of the tests. |
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| Lynnie, so sorry for what you are going through with your DH. The uti issue seems to be so hard to deal with, esp for those w parkinson's. I know I have a lot of problems that will be in my future with my DH. Although he is at about 5 yrs with this disease, he seems to be getting worse now. I have got to find a great Movement Disorder Specialist to see hm. We have to change docs due to new insurance but finding a great one is hard and it takes a lot of effort to even go to each appointment. Any out of the norm stress is hard to deal with, as you all know. He is trying so hard to hold on to the things he always does but I can see his dyskinesia is getting wilder and now there is trouble chewing due to the jaw tremor. I think he is a candidate for DBS surgery so I will keep that in mind. Won't be on Medicare for about 6 more months and that is a must for the surgery. Big problems ahead. Just praying I can stay strong and handle it all. I am all over the place writing this...just needed to vent. We have his whole family coming today so they will all see how bad he is now. Should be interesting. Seeing family is always a trip. |
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The results from the blood test and urine tests were normal so no infection. Now the doctor is ordering a CT scan of his head before they give him anything. I suppose they want to rule out any tumor before they give him something for confusion. |
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We are still waiting for the results of the CT scan. If I don't hear by tomorrow, I'll call the office and see what is happening. We had the best sleep last night but the past few weeks haven't been that great, so I am hoping he gets something to help soon. |
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| Good luck Lynn. |
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| Hope things have gotten better! |
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Well......... we still haven't the results from the CT scan of his head which his family doctor ordered. I asked his nurse a couple of times for the doctor to call me but didn't hear anything. She said he has the message and I even left a note. On the 21th we were at the doctors so talked to the receptionist and she said the doctor is behind. I explained that our appointment is with him isn't until Feb. 17 and with the MDS on the 11th. and we just want something to help him. Finally the receptionist changed the family doctor appointment to Feb. 3. In the meantime I had to confirm the MDS appointment and the receptionist actually answered the phone. Ninety present of the time I get the voicemail. Anyway, I asked if I could speak to the specialist nurse and she was actually in her office  I bought her up to date on things as she was the one who suggested that his confusion could be urinary track infection and to get blood tests (which were normal) and I told her we were waiting for the CT scan results. She said that she'll bring up his file and talk to the doctors and get back to me in a few days. She said that CT scan's don't usually show anything except I forget what she said, but probably something to do with the brain. Anyway, she said they usually give Seroquel for the hallucinations. She said that hallucinations could be from the Sinemet or possible dementia. In July while we were at the 6 month checkup, the doctor mentioned about a memory test but the room wasn't available. I told the nurse about this on the phone yesterday and she didn't know what I meant, but they usually do a clinical test (I don't have the right term). My husband has had those test before but not for a while. Hopefully they do some testing as his memory is really bad. So it's just a waiting game again, but we are getting closer thank God. I pray every night for his help. My husband has daily hallucinations and not just once a day, but several times and he still gets confused to where he is and who I am. It is usually after he has slept in his recliner too long. We need something before they get even worse. |
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| Linnie I have every sympathy I can pull for you. Do not give up or give in too quickly. My husband has been down this road twice since Labor Day. And last Saturday night he whipped us all at Scrabble. Both times it was infection and both times I suspected UTI and was wrong. But the right course of antibiotics, sufficient rehydration (when he has vomited, he tends to be wary of swallowing anything for a while) and enough rest and he snaps back. There in is the two headed snake. He goes back out to the shop, the power tools and I leave to work with my fingers crossed, making the sign of the cross, and crossing my eyes at the same time. That fine line of living life to the fullest/living life to excess is a tightrope above the pit. I hope they find the missing CT scan results, and that they show no injury, and that you can find someone to work with your medical group to get past this. Kaiser has an "ombudsman" dedicated to PD neurological patients that helps us. She is based out of Hollywood. She is right across from the famous Scientology Center, and the juxtaposition always seems curious to me. But she has cleared obstacles before, and knows the longer you can avoid more drugs, and brands like "dementia" the better off your husband is. Alas....we spouses are the best advocates for them most of the time. |
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Thanks for your thoughts. My husband used to hold down 2 jobs at the same and one was farming . He could do practically anything, and was a muscular 6 foot 3 guy with a good posture. He was also in cadets when a teenager. This disease has left him bending as he didn't do exercises early on to help. He shuffles and I could go on and on, but the worst part about it is he can hardly express himself and the words don't come to him so I am constantly guessing what he wants to say. We had speech therapy which was a 7 week program. We had an appointment once and week with the therapist and the rest was up to me. We continued at home, but lately I've been so busy that I haven't had he do the reading. etc. I have to get back to it. Anyway, he doesn't do things like your husband like working in the shop, or read much. He used to golf but that's too tiring for him and he used to make steel tree stands that he sold. We also used to have a RV but had to give that up too. Now at church he doesn't sing unless he knows the words (He had a lovely voice ) because he can't keep up with reading or reading the prayer or scripture in the bulletin. At least he goes to church and half the church goes to brunch afterwards which he enjoys. I am going to see if the Sinemet can be changed, but I doubt it. They will probably just add the meds for hallucinations. You see people on other blogs going off Senemet and we tried reducing it by 1/2 pill but his mobility wasn't the same after 3 days. At one time the MDS said if he didn't take it he would not be able to anything. At Christmas we had him playing the kid's Monopoly but he only lasted about 15 minutes and got tired. It isn't much of a life for either of us and I am considering getting some help as I do everything. There are different government programs and if I could get someone to come every week or even every 2 weeks to stay with him it would give me a break to do something by myself without worrying. I do leave him to get groceries most of the time if I'm not too long, or take him with me. One time I gave him a cart so he could walk around by himself while I took another cart to shop. He got his exercise that way. He also has a walker which he uses to walk around the house so he get some that way too. Yesterday he got his coat and hat and gloves on and walked around the court (street. ) I have to help him get dressed too also he doesn't sleep well which affects my sleep, etc. Sorry if I have repeated myself on the other post. I so appreciate everyone's support on this website. Thank you, thank you I won't give up, and I know help is coming with the doctors. It just the waiting factor. I don't think the CT scan is lost but just the fact the doctor is busy. I should also take my brother's advice and my friends advice and get help in the house in some form or the other. I promise........... LYNN |
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Update: Yesterday the clinic nurse for the MDS called and said the doctor's think my husband's sleep hygiene is out of whack. Since he is sleeping a lot during the day sitting in the recliner and through boredom falls asleep, she want me to try and keep him awake during the day as much as possible. They don't want to give him meds for hallucinations right now until he is assessed at the next appointment in 2 weeks. That is probably right as he doesn't have any hobbies which he can do anymore. He doesn't read much and mainly watches TV. He does walk around the house with his walker and has a recumbent bike to use which I have to remind him to do. I am going to look into the exercise program for Parkinson patients which is about a 30 minute ride from home. This has been available since the beginning of his diagnosis but he never wanted to do it. I couldn't force him, but hopefully he'll now see he needs something which I hope isn't too late. The nurse and I also discussed about me getting help so I can have a break once in a while as it's 24/7 job for me. After talking to her on the phone I took my husband to the lake for a ride and then we got groceries, and then came home. He slept for a while, but after dinner he was busy with the dishes or trying anyway and walking around and didn't sleep before bedtime. I got him into bed around 10:30 and he slept until 1 a.m. and got up and down and was going to walking around again with his flashlight, but after a little frustrating time, I finally convinced him to get back into bed. He slept until about 4 a.m. and then up so I convinced him to sleep in the recliner. He was up around 6:30 and that was it until he took his pills a 6:45 and went back to sleep in chair. It is now almost 9 a.m. so I should get him awake to have breakfast. I am going to try and get him to keep active after he has breakfast if possible. It is going to be a real task to keep him awake and probably more exhausting for me in order to get him back to sleeping better. Wish me luck LYNNIE |
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Hi Lynnie, This sound so much like my husband except that he sleeps well at night from about 9-3 then walks around with his flashlight and I try to get him back to bed from 4-7or 8am... He watches the morning news and could sleep again. It is up to me to be the entertainment committee and take him for rides, shopping etc. If he is bored he sleeps. My caregivers are pretty good keeping him up but I have other things to do besides keeping him busy all day long. It may be a bit better in the Spring when we can be out more. It's a daunting frustrating job.. My neuro says to wake him and keep him engaged. I think that is one big problem as his hobbies were cars, motorcycles etc and those are all gone. Good Luck |
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That is very interesting about the flashlight. That habit started for my husband when we were in our trailer so I didn't think anything of it, but now he does it all the time. We have 2 sitting around and sometimes they are side by side on the dresser....lol. He is always wondering where his wallet is and in the middle of the night he was looking for a pile of money, meaning the wallet. Today so far I got him dressed or helped him around 10 a.m. then I had a shower and then we went to the pharmacy as it was Senior's day when we get more discounts. He took a cart and walked around on his own and I looked for things on my list. I told him to pick up anything he thought he would like. He said "What about an electric toothbrush?" I said you had 2 or three at home so we don't need any. (I started him back on the regular toothbrush because half the time the toothpaste was falling off the brush before he got it in his mouth. Now he brushes his teeth or trys, but I have to help him do a better job and constantly asking him to open his mouth wider and he's half in a fog.....what a job. Anyway, to get back to the pharmacy.......he picked up some chocolate bars and we were in the store about close to an hour, so he got his exercise. Then we came home and I got lunch and after I let him nap for 30 minutes while I called a friend. Then we did some speech therapy which we have been getting away from, so it was more difficult today for him today and his system felt lousy so gave him some ginger ale. Then after that I gave him some mail to open. Are you exhausted? I am....... So......... now he's sleeping again. I can't constantly be at him, so we'll have to gradually get him back to normal if possible... As you say Jane, it might be easier in the nice weather although this winter so far hasn't been too snowy, so he hasn't had to wear his boots yet. I am going to call the Community Care Assistance Centre soon or tomorrow, so I can get a break from all this, even if it just once or twice a month. I am having some problems with pain in my foot which is probably from being an diabetic, so I need to look after myself. I imagine there is a waiting time, but at least I'll get the ball rolling. Take care.........and thanks for your thoughts. We are all going through the same thing and it's a comfort to know we aren't alone.. |
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Lynnie, I am now trying to keep my husband up past 8:30 pm I now have him watching the news. Hopefully that will keep him up another 1/2 to 1 hour. I have so many projects I want to do but need to go to bed when he does because who knows when we will be up again. I am having a caregiver stay here for one night this weekend to visit my grand daughter and get out of here for a night. I'm scared but I'm going anyway I hope it works out |