I am quite new here and have been following current discussions as well as searching regarding issues that have affected me.
My H is in his early-mid 50's and started with a dx of MCI in 2006, then FTD in 2009. Recently it has changed to general atrophy, back to FTD and now that and/or mixed D.
I found some topics from and regarding angelb, who I think initially posted as ftd. Like LFL and Deb, I related to the missed and mixed dx, and the age issues. When it started, H was still in his 40's, and D related dx were thought to be unbelievable by docs.
So, I followed angelb as best I could and I wonder how is she? In the last posts I read her loved one seemed in the final stages. The pain came through, to say the least.
Maybe I should not say "she" and instead say "you". But, I wonder, are you still out there and what happened with your loved one?
Hi Abby! OMG I haven't been posting but periodically I have been on reading and searching past topics. My DH is still hanging on...we have been going through alot lately from him having severe urine retention he had to go to the ER 2 weeks ago because the Hospice nurse came out and tried 3 times to insert the foley catheter...He has been in so much pain when urinating because they thought he was having bladder spasms and have been on medication for months for that. Once we go to the ER the nurses as well as docs also tried inserting the foley and it would get blocked halfway down...they called in a urologist after 7 hours and she had to breakthrough scar tissue which was just awful for him. it has been 2 weeks and since this past Thursdas there has been blood in his urine and noone will tell me what this means...He is eating but not much ....has lost so much weight but he is very heavy to move..he weighs about 120 i guess but feels like 300 lbs...they said it's dead weight. When the hospice aide came out this morning she said she knows what the blood in the urine means but she is not allowed to tell me because she doesnt want me to get upset . Now I really want to know what does this mean.
Well...we have lots of nurses on here and maybe one of them can answer your question. Know this must be a terrible time for you and your dh...Hugs, Hugs.
It could be from the repeated attempted catheterizations and then the actual breaking down of the scar tissue by the urologist. I think that your hospice aide is a hospice aide without sufficient knowledge or training to comment.
Thank you joan for facilitating this contact. i know you are very busy and angel's situation resonated with me so strongly.
angel, I think FTD, and I don't know much about it, is a special kind of evil. When my H first presented with it all the professionals said: it cannot be, he is too young, his iq is too high, he has acheived too much, the test scores (4 neuropsych evals) cannot be correct.
This is not to say that those confronting any type of dementia have it any easier.
H's dx was changed to most recently, mixed dementia. Whatever it is, it is devastating. He had a career and a life and it is now long gone.
As a new member I searched for your posts and don't know if I was able to read them all. When you say the hospice nurse came out, I took it to mean that hospice is coming to your home? Is facility hospice available to you? How did you choose one or another?
I am so sad for what you are going through. From what I have read, your journey is about three years now?
Neuro wants ALF now but H will not go. N predicts increasing apathy which will cause H to not know where he is within the next few months. Maybe then he will go. I found a very nice place but can only pay for it for a certain amount of time.
I guess it is what it is, but I am appreciative of having contact with you and wish you the best.
Thanks abby. Yes I chose to keep my husband home he has been on hospice since May 2011. My husband was diagnosed with FTD in May 2008..eventhough it now progresses like late stage Alzheimers. He had a sigmoid volvulus in jan 2011 and had 2 ft of his colon removed...in ICU for a month came home incontinent of urine and bowels..went to rehab for 2weeks for physical therapy in April because he kept falling...went into palliative inpatient in April for 1 week stopped walking there entirely. He has been bedridden ever since he was still able to brush his own teeth until August but not fee himself or anything else once he stopped brushing his teeth he totally forgot how to spit and had to purchase childrens toothpaste that was safe for swallowing.
yesterday my husband experienced blod clots every time he had to urinate with so much pain...the hospice RN had to visit yesterday to irrigate the foley tube...she said she doesnt know why he is having blood clots at this point....they may have to do a superpubic cystotomy since he is having so many issues. He is now 62 years old.. I am 45 and I am sure the only reason I am able to keep caring for him my age and health plays a big part. I am so glad i chose not to put him in a nursing home...this is why I believe he is still alive.
Angelb, Your age difference is the same as between my and my DH. This is especially sad as those so called golden years we look forward to when kids are grown and we have worked and saved and now hope to travel etc are all taken away..
You have done an amazing job with the complications you have described above which cause your DH so much discomfort. Funny thing, the other day I told my DH I was his trophy wife ( someone actually called me that once) and now I feel like a dented trophy with some tarnish in the bargain...Polly look it too...
Not that it is any indication of what is going on with your husband, but when my bil started having blood in the urine it was cause the aneurysm in his stomach was leaking. For you husband it could be his kidneys since he had that bad infection with all the scarring. At this point if it were my husband I would just keep him comfortable.
You are an inspiration to help me be more compassionate and patient.
I will pray for you every day.
After many differential dx and referrals the word came back first in 2009, FTD. I am often numb in the consultations and try to control being argumentative. So, I thought, okay, we went from MCI to EOAD so now what is this FTD? Then I got on the internet and as I read about it my heart went to my throat and then somewhere south and back up again.
Then I put in the disc and still can't believe "how can this happen"? I had asked the specialist N, after seeing his MRI/PET, "what does a normal brain look like?" and she, very close to my H in age, said "here is mine" and showed it to me on the monitor.
Something else has been happening all of a sudden...my husband's upper body from the chest up he is leaning to the left no matter how I try to lay him straight prop with pillows etc..he keeps going to the left almost stuck in htat position.. This is quite scary because he is really looking like pictures I have seen with this condition...he doesn not want to eat hardly anything..he is still drinking...and I really feel that time is winding down...can't be sure but it is how I feel
Both my mom and my uncle did this leaning thing but to the right. They were both right handed so I wonder if that has something to do with it? Also their breath seemed odd, can't put my finger on that but both had that too. No repositioning efforts really worked for long. However in my mom's case she was not eating nor drinking much more that 500cc of any fluid at all..Not sure about my uncle as he was in a nursing home and had to have help eating. He did not look terribly under weight but my mom was down to about 80 lbs or so..It was awful to see and scary too.
angelb, My dh is right handed but he is loosing the use of his right side due to the atropy being on the right side of his brain moreso than on the left. He has started leaning to the left just within the last week. I know how you feel but don't have an answer. He has an external cath. on during the day and it stays kinked due to him leaning on the left side. I will have to try to change it to the right leg and see if that works. My dh is still eating but has to be directed to sit and helped to get started eating. I usually have to wind up helping feed him most of the time with the last little bit on his plate. It is a scary time to see so much happening that we know will happen but are now seeing. Prayers for you to find comfort in all of this....
It has been a rough several days....my DH was asleep and he starting gagging and making sounds coming from the back of his throat..you can hear the mucous/fluid...scared me so bad and I tried to see what was the reason..he never woke up but this happened 2 nights in a row..was told to give Robitussin which did not work so the Hopice nurse came out to evaluate and said it was secretions and said to use 2 drops of atropine if it happens again...yesterday my husband was acting differently and so I took his blood pressure 177/111 and temp was 102.6 again the nurse said Hospice is not concerned unless the pressure is low....it did go down to 96/64 and the temp broke.....he is strugging with swallowing and everything is now thickened thicker than honey..his output on Monday was 1500 cc eventhought it had been 500 for the past 2 weeks and now it is back down between 400-500 cc in a 24hour period. can;t figure out how he had so much urine output for that one day...and now it seems to be getting less and less prior to 2 weeks ago ..output had been aroun 800-1000 never had ever been 1500. He really seems weaker to me on Monday
On Monday and Tuesday he didn't respond to me at all which was unlike him..normally even if I ask a question he would respond whether it made sense or not like he knew I was talking to him...on these days it was like I wasn't saying anything at all he would just stare straight ahead.