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She is bent over constantly and chokes a lot. We have had to lock her ands dogs meds up because she gets it all mixed up. And she's developed OCD about certain things. Even neurologist thinks she's rapidly worsening but latest. Brain scan didn't appear to show any marked changes. She's starting to have a few accidents but. We can't tell if its just that she couldn't get there in time? Newest trend us going to bathroom every 20 min. And chasing us outside when we leave for work. Clearly she's not mentally understanding everything anymore. Worried about how much longer she has and how much longer before she can't be cared for at home. She fell as she does a lot but this time fractureed her nose. Scared for her. Still don't know how it happened cuz she can't say anything and we were home!

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Jackyorrick: I hope you are looking into what your state offers in the way of help for your situation. Contact your county Department of Aging. You need help! I feel so bad for you both - I can't imagine the horror of someone having to clean up after me (and I hope I never do!); I did have to do that a few times for my Mom and even though I raised 3 kids and wiped lots of behinds in those days, it is not the same when doing it for an adult. Please don't feel guilty! You're not alone. You AND YOUR HUSBAND need to focus on finding out what resources are available in your state. Good luck - I'll be thinking of you.
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vikilynn....bless your heart....I know it has been a very sad and emotional time for you...as norestforweary said, hold onto the good memories and know you did all you could...and now at last...peace...I will keep all of you in my prayers..God bless and comfort you.
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vikilynn... I am sure it has been quite an emotional last few days....... Try and hold onto to the "good" memories....... know you did a good job.... and peace for her at last!
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To all you wonderful caregivers and advice assisting hero's.... I wanted to let you all know my mom lost her battle. We buried her today. I really appreciate all the support you have given me. I wish all of you the best and am still here to help you should you need anything. God bless
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Jeannegibbs, it has been hard for me physically and emotionally taking care of Mom. She is my husband's mother not mine but we have been close for many years. I used to take her shopping and to lunch regularly when we lived in California. Both her daughters and eldest son have died so she thinks of me as her daughter which is kind of nice as I lost my mother when I was 18. The problem is, I don't want to be her nurse. We've gone from being buddies to me doing everything for her including bathing and cleaning up her accidents and changing her Depends. She does sleep through the night and if she can still stand up and walk after rehab she can step in and out of her Depends but she gets frequent bouts of diarrhea and can't get to the bathroom fast enough and I get to clean up the mess and her. I literally gag and she gets upset and apologizes in tears . I tell her it's ok and just an accident but it's tough. If she gets to the point where she can't walk any more, I can't do it.
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All it takes is mini strokes to decline. Try asking the doc to wean her off the meds. If that's not it medicare will get you a hoyer lift. I love it and use it all the time for moving my mom. Good luck.
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I'm sorry for your Mom's seemingly rapid decline. I can tell you that my Mom also has had a fairly rapid decline and in fact, since Christmas, has gone from being in her reclining chair and able to get up to go to her potty chair to now being totally bedfast and unable to do anything. She was eating full meals just before Christmas and just as suddenly will only drink Ensure, Boost, puddings, milk, applesauce, and things with that texture. All of this happened right after surger from a fractured ankle when she just went down as she stood up....It has been heartbreaking. I have gone from believing I would have her with me for years to now fearing losing her sooner rather than later....She is so frail...she currently has a bad cold and I and the hospice nurse are monitoring it closely as anything can turn major so quickly with our elderly loved ones...Many prayers and hope for you and your Mom...I understand...
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jackyorrick, mentally Mom is not bad, but she can't translate what she is told about using the walker into action. Sounds like maybe there is both mental and physical decline.

Is it time for NH? How is the caregiving situation for you? Does she sleep through the night? Do you have some regular respite? What are her physical declines and how comfortable are you handling them? Can she cooperate with cleaning up her incontinence or is she dead weight?

Often whether a person is "ready" for NH is a matter of what the caregiver can deal with. Most people with dementia do reach a point where it just isn't feasible to be cared for by one person in a private home. Either in-home help or a care center is needed. If you think Mom is approaching that state, then moving into an NH from rehab might be the easiest way to do it. Good luck to you both.
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I had Mom diagnosed with early stages of dementia and her doctor immediately put her on Rispiredone and Donezapil. Within days she stopped hallucinating and her cognitive thinking was almost back to normal. She understands that she was " crazy talking", her words, and that none of it happened now. My concern though is the incontinence and the lack of mobility in the past eight months. She can walk with a walker but shuffles bent over and pushes it in front of her like a baby buggy putting all her weight on it so it will barely move. I have told her how to use it correctly, as have her doctors, therapists, sons and everyone else who sees her doing this but she just won't get it. Mentally she's not doing bad but physically she's declining steadily. Any thoughts on this? Time for NH after rehab this time?
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Vickilynn, you and the MD don't seem to be on the same page. Accept the fact that she is going down hill quickly and ask the Hospice nurse what to expect over the next few days and weeks. No one can give you a time table, but being bedridden and unable to swallow means the gates of Heaven are close by.
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Ashlynne - wherever captain read it, the month/week/day observation has held true for everyone I've cared for. It may end up being the best indicator??

Vikilynn - brain scans are INTERESTING and a show SOMETHING, but they are not completely diagnostic of dementia brain. Also, more than one kind of dementia can overlap and coexisting at the same time. You a right to be concerned about sleeping. My mom started that in the last 10 days and it lead to pneumonia, which is essentially what caused her death. By contrast, my dad with Alzheimer's with a big man with back problems, so we had him in a reclining chair instead of a bed. When he started sleeping more, he wasn't lying down so his lungs did not fill up with fluid and he never got pneumonia. He did stop eating, however, and lost 37 pounds in 9 weeks. His COD was technically heart failure but we will always believe that the heart function was affected by starvation.

You seems fairly balanced and in control of your feelings about this. It does seem like your mom is beginning to approach crossing over. Just be ready for it, it's about all you can do right now.
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Captain that day/week/month thing is interesting. Where did you read that? I visit my mother in the NH about once a week and, in that week, she's deteriorated terribly. She has Parkinsons and dementia. Since a stroke a couple of months ago she can't sit up or stand by herself, the dementia is really bad and what she says (or berates me for) is just her imagination. Very occasionally she's more or less with it, but what follows is worse than ever.
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Jeannegibbs, I'm sorry for your loss thank you for your advise. I actually have her on hospice and have someone come bathe her 3 times a week. None of it is bad or upsetting to her as she has lost all modesty. We do all we can to make her feel comfortable here at home. Although her decline was rapid it SEEMS to have slowed but I dont want to fool myself. She can still walk some but tires quickly. She eats without assistance but chokes alot. I just keep wondering will she continue this way or is she suddenly going to die. Doctors, nurses... No help or treatment and no clue as to how close she is or if she's getting worse. I know she could die of stroke or pneumonia etc. I feel helpless watching and not knowing. Mt father had COPD and for at least 10 yrs had difficulty breathing. Then suddenlya yr ago yesterday he took a nap and died ....
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vikilynn,The brain scan looks the same -- that MAY mean that the newer symptoms are not from primary progressive aphasia. She could have dementia of some type, although not necessarily Alzheimer's.

I guess that more important than figuring out the exact cause of each symptom is to make her as comfortable as she can be, with as much quality of life possible, in spite of the symptoms.

Spending increasing time in bed was a sign of end stage for my husband. When it got to be 20 hours a day I called hospice. Perhaps an evaluation for hospice would help you understand where she is at. Even if she isn't ready yet, the evaluation could start the process and help you know what to look for.

Best wishes to you as you struggle with this very challenging and sad situation.
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My moms primary progressive aphasia continues to take its toll. Its so hard to knoow how she is or what she needs when there is no talking. I suspect she isn't understanding everything anymore but I know the extent because. I can ask her about her knee and she will show me her knee. But other times I can say something and I get a blank stare. She walks pretty well with her walker but if she doesn't use it she can barely get around. She's almost completely incontinent now and the home health nurse said she is signing her maiden name to verify the visit. Could this mean Alzheimer's is starting. She's declined so rapidly over a year but she had a brain scan 5 months ago and doc said it looked the same. She also stopped caring for her dog she was obsessed with and spends entire days in bed more often. Other than that she seems to be doing ok... But is she? Does anyone who has lost a loved one have any insight into the end stages?
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one of the most interesting thing ive read in the last year was if you are seeing decline in an elder monthly they likely have months to live. if you see decline weekly, they have weeks to live and when the decline is daily they only have days to live. pretty accurate in my experience. in one year my mother went from coherant and only occasionally delusional to shuffling footsteps, constant hallucinations, to barely mobile with a walker and finally terminal agitation and hospice induced coma and death. hospice does indeed hasten death dont let them doll it up for you. i dont disagree with it but once functions begin failing hospice starts dropping the morphine and ativan with no plans for you to ever awaken to the misery of the dying process. maybe they dont hasten death but they hasten the process. say goodbye and we love you before the liquids morphine and ativan begin cause thats the end of the line for communications.
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Vikilynn...It really sounds like dementia. My mom was 91 and went progressively down hill from July to October last year...she was somewhat her self..but from October until she lost her battle in January she went from bad to worst. About one month before her death she stopped walking, she was delusional, she was having nightmares to which she would mix with reality, she had the aphasia at times, she lost her bodily functions, she would be agitated easily especially at night aka "Sundowning". Dementia is such a frustrating disease...I hate that there are so many out there suffering with it. Hospice was a great support to me. Helping with her medical needs for comfort and care. If she is declining fast...having them would be a great asset to you and her. Good luck and God bless.
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I had the same problems with Mom after rehab. Changed her doctor and had full blood work up done and urine test for UTI. Rehab changed her thyroid meds and test showed it was wrong dose and she had a UTI. Two weeks later now and antibiotics cleared up UTI and thyroid regulated, she is almost back to normal. No hallucinations and crazy talk! A little confusion at night but WAY better. Please have your Mom tested asap.
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I hate this but it is always best to call if you have heard nothing on lab results. Many practices are in the middle of converting from paper to electronic records, sometimes the docs routinely get notices of all abnormal results immediately, sometimes they usualy but don't always get them and then think they don't have to keep their own tracking system in place, and there are any number of reasons an important result may slip through the cracks. In our situation, I actually tell patients to call back in a few weeks for the results that take longer, and to let us know when they come in for a test we schedule in advance because these typically do not pop up in our EMR and we are way beyond being able to check all outstanding results every day. And then we DO get boat loads of notices of "result edit" that may be absolutely nothing but typo corrections or style, not substance, ALL THE TIME...I hate it's like that because I know a lot of people just assume that all reuslts would get handled appropriately if the practice cared enough, and I know most places could do it better electronically, but we are just not there yet.
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Thank you all for the great feedback. My mom has been diagnosed about a year and a half now with primary progressive aphasia. We are currently looking for a day nurse or someone to care for when we are Not home. I am paranoid of abuse so I am also having security cams put up throughout the house so we can monitor from work. In June we did think about a uti. So when she went in for her bloodwork we called ahead and requested Dr. add a urinalysis. We were not able to get her to go so we brought home a hat like contraption w removable cup. Unfortunately she decided to use it at a time no one saw her do it. So we turned sample in convinced she may have just gone and scooped it from the bowl and ruined any result. Bloodwork came back but not the urine. Dr. Didn't call. We assumed it was negative or contaminated. But I decided one day to call Dr. And discovered she does in fact have a uti. My poor mother has been suffering for a while .. and 2 months more since Dr. Didn't bother to review or follow up. Now I am wondering if she needs to have additional bloodwork and kidneys checked for damage and sepsis. This rare dementia is so difficult because she clearly understands but sometimes I don't know how much. And the new behaviour issues. I really wish I could get a good feel for what's next and when. Changes seem weekly now.thanks everyone
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My Mom did also, due to a cerebrel hemmorage stroke. SHe hasnt walked for 2 years and is still with us in our home. The Dr said dont ever go to a hospital, they are full of germs and she is too old to fight them most likely.
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Yep, it's happened to my mom. It also happened to her mom and her aunt, they were dead within a year. I thought it was a blessing for them and it will be for my mom. I miss her already and will miss her even more but to me she's no longer here anyway and this certainly is not living for her.
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Yep, my Mother declined very rapidly Vickilynn. The last 2 months have been really bad and the last 4 weeks it was like she was in a coma. She lost her battle last Wed. I was at hospice with her for 11 days, they are truly great people, who have to be blessed to do what they do. We had started using a blender to puree Mother's food, that helped some. But I didn't get to hear her voice for the last 5 weeks. Be careful of nursing homes, just check them out really well if you can.

And I agree with 4th daughter, Mom went in to the ER after falling and they sent her to a rehab/nursing facility, she got a staph infection, cdip, uti and pnuemonia there, it was rough, but she could no longer walk, talk or eat so she needed that 24 hr care. I still question that move, and that was a top rated nursing home!

Good luck and God Bless You. Hugs.
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I vote for checking out possilbe UTI and also a thorough medication review. "Bent over constantly and chokes a lot" plus walking problems sounds like either Parkinson's disease or drug-induced parkinsonism. A geriatrician or better still neurologist with geriatric expertise could help you with this.
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I would highly recommend that she not be by herself...if she is chasing you as you leave for work....she is scared. It's only going to get worst. With the dementia her brain is deteriorating and things are starting to go haywire. She will be afraid, have delusions, the body functions will shut down. Even her ability to swallow...which by far is the scariest thing for them. I'm sorry to be so honest...but being more aware of the disease will benefit you in the long run. There is a lady by the name of Teepa Snow you should watch some of her videos on youtube. She is so informative and it was very helpful to me to watch. She explains what's happening to your loved one and how to react in some situations. I sure hope for better days...but be prepared for the ride of your life. I know it was hard when i went through everything with mom. But I will say...I have no regrets.
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After the hospital, rehab got my mom walking pretty well. She didn't like the exertion at first, but it did help. She loves the 24 hour care at the NH and we love her progress. There comes a time, when your mom may be better off, in the hands of skilled care.
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Hit submit to soon.
Can I ask does your mom have an advanced directive? My mom had her DNR form made up 10 years prior to her diagnoses so we knew what her wishes were. She did not want any life sustaining procedures. So when she refused food she did not want a feeding tube. Hospice was so very useful at this point. They kept mom comfortable and pain free. If you don't already have them talk to her doctor and have her evaluated for hospice. Get respite when you can. Caring for someone with dementia is exhausting, take of you so that you give her the care she deserves. Good luck and God bless.
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Vikilynn. Everyone's progression is different. But it also depends on the type of dementia. A year ago my mom was diagnosed with progressive dementia and I was informed that she is unsafe to live alone. The doctor was very concerned. So we moved her in with me and my family. Our journey was fast and frustrating at times. I would encourage you to keep a journal because if things are progressing as fast as you say. It will help you understand. Also google dementia and check the symptoms. All the ones you are talking about are symptoms of what happens in the final stages of the disease.
Mom lost her fight after 6 months of the diagnoses.. After learning what I could about the disease we learned the type of dementia mom had was Lewy Body Dementia.
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A brain scan won't necessarily show her cognitive skills level. You are the best observer. My mother's decline was very fast too, and each person is different. If you do not feel as if you can handle the further deterioration, maybe it is time to look into a care facility. You say you leave her alone while you go to work? Not good. Patients with dementia need 24/7 care. Best wishes.
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Sure does sound like a UTI to me also, the craziness and the going to the bathroom all the time. Some doctors will treat even with a negative culture , as did mine, and they get back to normal. Whatever normal is for them. This person should not be alone, Lord no! She is going to go into the street, hurt herself of burn your house down. Time for caregivers, thats what I did until I left my job, along with daycare. good luck
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