My husband has been sleeping a lot....I mean almost around the clock and so very weak. Two months ago he was walking slowly, but walking and fairly steady on his feet...then a cane...and now a walker.. (earlier this week he needed a wheelchair when going to the lab) . All this in 2 short months! Almost daily I am seeing a sharp decline...he had an minor infection which he no longer has with a fever, but the fever is gone and his vital signs are good (I am checking them 4 times daily). Now he is having trouble talking. I don't mean that he can't find the words...I mean his voice has no strength (he had blood work and CT done and all signs are good) I can't help thinking he may have Parkinson's, LB or perhaps "failure to thrive". He has no appetite. I am so worried and I am literally a physical wreck.
Lulliebird, it's hard for me to know what to say, since I haven't yet experienced this, but would Parkinson's or LB come to light that quickly? Also, what "stage" is he in (although I find it isn't always easy to define a certain stage)? I can't offer any advice or wisdom, but I will say a prayer for you tonight. Keep hangin' on, girl....
Thanks for the prayers...I am hangin' on...we have no choice but to.
I really don't know the stage, but one year ago he was considered mild/moderate. Now I would say (just a guess) moderate/severe. His physical body is now escalating the mental stage, which leads me to think the sharp decline is a product of something else. Perhaps, "failure to thrive".
When he lost his driver's license in November 2012, it was very devastating. I know many have difficulties accepting this, but I believe if it is a "failure to thrive" this contributed. Now don't misunderstand, I was and still am a strong supporter and advocate in revoking a driver's license for their safety and the safety of the community.
I appreciate your time in chiming in...and thank you so much for your prayers tonight.
I'm chiming in too so that you know I'm also thinking about you. I have been there and it's very hard. There really is no choice but to hang in as best we can.
We can never have enough knots on that rope! I really feel that I am losing him quickly, which in many ways is a blessing for him. Several weeks ago he asked me to "shoot him". In all my years married to him I have never seen him cry...not once...until a few weeks ago. I believe it's time to put in a call to his "shrink" and give him a heads up on the my suspicions of "failure to thrive" He is now only eating liquids (soups, pudding) Gatorade and one slice of toast. I don't think he would qualify for hospice, but he needs intervention. I am doing the best I can. Damn, it's tough!
I would say to call hospice. They will evaluate him. They can always qualify him and then if he starts to thrive with help, they can remove him from hospice. It is a very tough phone call to make but you can get help evaluating what is going on with him from hospice. Yes, he could be declining this fast just with Alzheimers. It depends on what part of the brain is getting the tangles. hikergirl
Have you called his doctor? Sounds like he needs an exam and evaluation. The doctor can determine if he needs a Hospice evaluation. Maybe or maybe not this is a quicker unexpected decline, but whatever it is, I think you will function better when you know what you are facing.
Believe me, I understand completely how this kind of worry can make you into a physical wreck. I am sending you as much strength and as many warm hugs as I can.
I am so sorry, Lullie. Do call hospice. They have been such a big help for me. Along with helping DH. He also has failure to thrive. Weight loss started about 5 years ago. And in 3 short year from the dx he is nearing the end. It can go that fast. ((((Hugs))))
Hikergirl, I really am uneducated about how hospice works, but I will have to start educating myself because there will be a time (maybe not now, but sometime I will need to be aware) Thank you so very much.
Joan, Yes, I have. He had an apt. with his PCP this Wednesday. He was running a fever....sinusitis was the DX with prescription of "mycins". He had a CT scan Thursday (for possible TIA or ???) which was normal...TSH...normal....vitamin D..normal...CBC all normal. Very puzzling because just a few minutes ago I went in to give him his evening medicines and he can barely raise from the bed to a sitting position. I am really really scare Joan. This is a guy who 6 months ago was so physically strong...mentally he's still intack (he's aware of his surroundings and fairly well oriented.) Yes, I understand what you have been going though and it's hell! You have been in my prayers, thoughts and heart. Lullie
Blue, Yes, I believe that he needs hospice, but I am not sure he would qualify. Only recently has his appetite declined (so there probably isn't much weight loss) . Only one year ago (October /November 2012) was he "officially" dx as AD. Of course, I believe he's had this demonic disease for around 10 years based on his behavioral changes. Thanks for the cyberhugs...and back to you as well ((hugs)))
I am at a lost for words, It does seem like the call to hospice would be the way to go, at least they can point you in the right direction. I will keep you both in my prayers.
I am at a loss for thoughts....I feel so helpless. He looks so pitiful. I only bought a walker for him less than 2 weeks ago because the PT said he may need it down the road. Oh, did he fuss and said he was going to throw it out...and a few days later he was forced to use it. Then Thursday...he could barely use the walker when I took him to the clinic for the CT scan and I borrowed their wheelchair and wheeled him to the vehicle.
Among the other wise advice here- joan's comment- that you will function better when you know what you are facing- resonates so strongly.
It is my understanding that hospice in general is very attuned to "adult failure to thrive". It was the basis of my husband's admittance. While his weight loss was not the primary reason, he had increased need for assistance with ADL's, increased fatigue, and decreased mobility.
The help from them was instant. Please consider calling them Lullie. At least for a consult; to get their opinion- and then you can decide based on additional information.
It's almost three AM, & here I am - wide awake & reading the blog! I have learned another new bit of information here today - I did not know Alz. patients could have failure to thrive. I've heard of it with babies & young children when they feel no loving, human touch/contact, but I doubt that's true for most of the loved ones here receiving such care from their caregivers. Is it just a part of this damnable disease? I'm going to have to try to find out more about that. Well, hopefully, good-night (or good morning!)
Abby, Yes, I agree with Joan's comment and your concurrence "function better when you know what you are facing." Monday I will be not only calling his PCP but his psychiatrist. Hopefully they can get the ball rolling by getting a hospice assessment. Thanks for the prayers. So many wonderful caring people are here!
Mim, Yes, it's not unusual for the older patients to develop "failure to thrive". In fact, I have read on sites where it's pretty common. Yes, it's surprising that with all the care we give our spouses that this would happen however, we are dealing with a disease which is daily chewing away their brains. My husband has been battling depression for at least ten years and I believe the true culprit of his depression has been Alzheimers/FTD. Of course, he wasn't diagnosed with it then, as it was dismissed, but prescribed an antidepressant. Over the years the strength of dosage was increased to now the highest dosage recommended. I believe that the medication has lost its ability to successfully control the depression which has resulted in sleeping more and more. As the sleeping has increased he has lost strength and mobility. I have tried to get him interested in activities...no motivation. About 9 months I sought out volunteer organizations which he could belong and even went to far as to call and request written references to former places he donated his time/work. As the deterioration increased I looked into "adult day care"...telling him it was going to a "senior activities center" no interest. His world literally crushed when he lost his driver's license 10 months ago. Also, his son...the one we moved here to be closer for him (his favorite child)...has NOT talked to him since mid May! (Father's Day no connection either) I have invited his son over twice this spring for a BBQ. Both times I never received a call back. I even texted his wife that we were waiting for them that weekend...her reply "I was busy doing taxes and forgot!" Now that he is declining so greatly...for my husband's sake I am thinking of calling again and asking him to please come visit his dad, but then my otherside says "no" you can't force a relationship which his son now does not want because his dad is dying. This is heartbreaking cruel and I really I am struggling with this issue. Any ideas? Lullie
Dear Lullie, I am so sorry your DH is declining so very quickly. The advice everyone has given is of course very good, so the best I can do is say the same thing. I wouldn't wait until Monday (Labor Day holiday), I'd put in an urgent call today with both his PCP and psychiatrist and tell them of the dramatic decline he is experiencing (why wait another day?). Also insist that one of them contact Hospice immediately for an evaluation. It can't hurt and it will be very helpful in getting him back to base line. Based on your description, it sounds as though he would definitely qualify.
I will be thinking about you all day and praying that you DH will be doing better soon. ((((HUGS))))
LFL, Yes, I will not procrastinate until Tuesday ( I totally spaced Monday being a holiday). As the adage goes "squeaky wheel get the grease". Thank you for your thoughts and prayers. ((hugs)) Lullie
I talked to DH doctor about the sharp decline while at my appointment. We both have the same PCP. He told me to call Hospice and that he would sign off on it. So I called them and thought they would come out in a week or so. They came the same day, and signed him up the same day! I guess part of me wanted them to say it was to early. Ours is for if you have 6 mons or less to live. We are on month 7. Just rectified no problem. Our group is great, they treat DH so nicely, and are so kind. And the best part, they are just a phone call away.
And when they come, let your DH be himself. If he can't shave, don't shave him. Don't help him get dressed. They need to see the real DH.
since he did have a previous infection, any small amount of infection left in the system can bring them down dramatically. if it were me seeing such sharp declines I would ask for a blood draw and urinary tract culture just to make sure its not infection causing the demise. and by all means call hospice to come evaluate him.
Lullie, so sorry sweetie ((hugs)) I do agree with Divvi, any flu, cold and especially infection can really do a number on our LO. Once long ago Lynn has an undiagnosed UTI, he had no fever and all seemed per usual. Until he took a sharp decline and then next started to hallucinate. Man what a scary few days that was! I understand that you have had him seen by the PCP and had blood draws etc, sometimes though the symptoms start before they can test positive for them. Like Lynn's pneumonia, he presented with severe pneumonia symptoms but his lung scan was fine...until a full 5 days after severe symptoms. Just a thought Lullie
Keeping you both in my thoughts and prayers ((hugs))
Blue, I agree with your statement about letting Hospice see him at his worse without any assistance in bathing, shaving etc. Hospice doesn't need to see him on his best day (which today...this afternoon he perked up!). It's a good thing, but it's not the true picture of what I have witnessed for the last couple of weeks. ((hugs))
Divi, I have been monitoring his vital signs along with fever. He was only running a 99.2 (highest yesterday), with good blood pressure. Last night he struggled to raise from the bed to a sitting position to drink fluids which I have been pushing. This morning and afternoon he is running under 98.6 and is now sitting up with a bowl of ice cream and 3 cookies reading the Sunday newspaper! This is the most I have seen him eat in days. Perhaps, I hit the panic button and this was due to sinusitis ??? He still has declined quickly, as mentioned, from walking without assistance in two months to cane, to walker. I my heart I feel that he is suffering a snowballing cliff slide in the last year, but the infection now contributed . I really think it he continues at this pace (with or without an infection) he will be placed on hospice in the next three months. Earlier this a.m upon reading LFL's post, I was 100 % for not procrastinating one day longer and now I am waffling with the "let's see what tomorrow brings" attitude. As Blue mentioned in an earlier post, Hospice came out the same day. I do want them to make an assessment on him on a typical day (not one of his better days which is today). Thank you for you words of wisdom.
Hangin' On, I have never heard any negative input about Hospice, but only praises. I really would prefer him to spend his last days at home under hospice care if possible. Personally if at all possible I would like him to spend his last days under Hospice care here in the home. Have a Nice Memorial Day.
Nikki, Oh sweet lady...you have been though hell these last couple of weeks...and to take the time to drop a note is so very kind. Thank you Nikki...I know you must be absolutely exhausted from the physical, emotional and mental strain. I have prayed and prayed for Lynn and you. As you read my comment to Divii, he is doing much better today. He is sitting up on the couch reading the Sunday newspaper and happy as a clam eating his ice cream! Can a clam really be happy???? Funny, but they all have the love for ice cream. Best of love to you and Lynn
Coco, Thank you for your thoughts and prayers. You have also been though so many heart-wrenching trials with Dado. You have been a pillar of strength for him. I admire you positive attitude! Best to you and you dear one Dado
lullie - I know with women an antibiotic can cause yeast infections. I see no reason why similar cannot happen in men. I am glad he seems to be better. If he had been battling depression, if that is what it really was, then loosing his license could have sent him into a deep depression accounting for the decline.
Whatever it is, I do hope you find out soon even if it is not treatable. There are so many unknowns with this disease, nice to have answers whenever possible.
DH has also been declining very quickly over the past week or so. The second and third fingers of both his hands are now bent so that he cannot hold a knife to cut his food. He asked me to cut it for him. Holding a fork/spoon is also difficult, and he is eating mostly with his fingers. His sundowning is worsening, even with the Ativan and if I up the dosage very much, then he doesn't walk well at all. I think he has had a series of TIA's over the last few days or a week or so. His speech is garbled; can't put together a sentence most of the time; and what I do understand him say doesn't make any sense at all. But, I listen and agree with him and he's so pleasant about it, I can't help but smile! Once I get him calmed down he usually will sleep all night from about 10 to 6 - so I still get my rest! There are some things to still be thankful for.
Me too , Vickie you are so lovely. Dado also has his fingers curling up more and permanently bent, first it was the right hand but now the left is doing it. I gave him a bunch of grapes to eat the other day, and the poor dear could not tear them off the bunch, and his hand shook so bad he just squished them when he finally would get it off. Sounds like our guys are kind of neck and neck, also his speech is garbled, and he can stand briefly with help, and no stepping.
What a difference a week makes! As I previously mentioned last week my husband had declined tremendously. I wasn't not aware of how dramatic and dangerous a simple infection can be for an Alzheimer's patient. He was treated for "sinusitis" and after a few days his fever returned to normal however, he was having a terrible time walking and sitting up. Last Monday he was too fatigued to shaved himself without assistance and was sleeping around the clock---absolutely as weak as a kitten. I was ready to call Hospice for an evaluation. Today he's walking without the walker and forgetting to use his walking stick! He ate a full breakfast (juice, toast, 2 scrambled eggs and sausage). I now am much more aware that even a low grade fever can send an Alzheimer's patient over the edge. ---very alarming!
Friday I spoke with husband's psychologist about getting a referral for "Palliative Care" he mentioned this would need to be directed to the Neurologist. Has anyone had any experience with "palliative care"? I would like to get some feedback pro and cons.
lullie I have been on a bandwagon for a while about how it doesn't have to be a 'real' temperature to set them back. mine usually only runs around a 99. or so and its enough to set him into convulsions if not treated. ANY slight infection does something awful to their system. its good to know that a thermometer even on a very minimal showing can be a cause.
LFL, I was under the impression that "Palliative Care" was a more of a pre-Hospice---a sort of bridge to Hospice.
Divvi, You are absolutely correct about only a slight fever causing major problems. You have made a believer out of me! My husband, in all the years I have known him, has always the healthy so I had no idea that his "normal temperature" is 97.2 . When his temperature was 99 I really didn't think it was that alarming. Wrong! I am now going to monitor his temperature daily no matter how well he appears. I think it's wise for all caretakers especially as we are approaching flu/cold season to do the same. Just my opinion
DH is now talking in the third person! Haven't read anything about this anywhere, so don't know if it's common or not. Instead of saying, "Did you cook breakfast......", he will say, "Did Vickie cook breakfast", while looking at me.
Oh Vickie, How terribly disturbing! I haven't heard of this but this disease is so puzzling and mind boggling. I am so sorry that you are experiencing this behavior. ((hugs))
Vickie, that poor man. How confused he must feel. It reminds me of when my husband believed the man in the mirror was a different person. I have stopped trying to understand what is behind his behaviors. I just shrug my shoulders, agree with him, and keep any conflict to a minimum. I've decided my purpose in life is to keep him content/happy for as long as I'm able. Hugs and treats - that is my biggest contribution nowadays.
I have heard of them calling themselves by their first name rather than saying "I". There was a study done on this. He hasn't done that - yet! At least he asked me to marry him yesterday - but he didn't call me by name!
Well, he hasn't again+ brought up 'that other woman who comes to take care of me, drives my car, cooks for me..." -(that's me!) He wanted to know who she was. Told him it was me and he said, "well, that's good thing". Not sure about a new ring though!
Honestly, some days it's like playing "who's on first". Keeping our sense of humor is critical ..... and keeping a bottle of wine handy is not a bad idea either!
Vickie i would not be too alarmed at the third person referencing. hes confused as to who everyone is including himself at times. just keep doing as you do and let him know you are the person who most loves and cares for him. he may not register the name but he will know that in his heart names are not important. it doesn't lessen the pain the first times when it happens though. and for sure keeping a sense of humor is critical in all areas of this disease. it will see us through to the other side. divvi