Marlin became a resident in a nursing home setting for Alzheimer patients. This step was incredibly difficult for all family members. I believe Dad adjusted to the nursing home better than the rest of the family. Once in the nursing home, the medical staff found the right combination of meds to tone down the sundowners. I should also state that at this point, on most days Dad did not know he had grandchildren or children. Although he was unaware of our relationship to him, he did know that we were someone familiar to him and always greeted us with a smile. Soon, he forgot my mother as well. Despite these changes, our visits were still enjoyable. One learns to adjust ones expectations to the current stage of the AD. Today, for example, we are happy if he is awake and we get a smile from him.
Shortly after moving into the NH it was discovered that Marlin could no longer handle regular foods. His meals were mashed and ground and his beverages had thickener added to them to aid in swallowing. A few months later and his food was ground up even finer. This was a result of food particles found in his lungs. Speech became more limited, but he was always willing to talk just the same. Dad liked to walk the floors of the nursing home and often found it difficult to sit for very long. With the sundowners under control, Dad was cheerful and had plenty to say even if we didn’t always understand it. Soon, he started falling. Eventually, it was discovered that he really did not have control over his legs any longer. At this point, he became wheel chair bound. The NH called a family meeting and we were informed that Dad was now in the final stage of AD. The head nurse explained what we could expect to see happen going forward and took time to answer all of our questions. A few weeks later, it was discovered that not only could he no longer walk, but his legs could bear no weight, standing was out of the picture as well. Dad is currently bed bound. Speech is almost non-existent although he tries. We still get an occasional smile, but not as often. Meals are often missed because of excessive sleeping. There has been a rapid drop in weight, a battle with a bed sore and problems with a catheter. He now often suffers from seizures and is changing rapidly. Sometimes, he does not seem to notice when family is in the room.
There are many details our journey I have left out, but this is a general over view of how his AD progressed from diagnosis through today, 7/30/04.
Updates
Last night Dad aspirated at some point. This morning, he is on oxygen , antibiotics and using a nebulizer. He is very congested. He is no longer allowed pureed foods. He’s strictly getting ice cream, sherbet and such. Despite all this, he smiles and tries to laugh. AD may take away all of his abilities, but it hasn’t been able to touch his spirit! 8/6/04
8/7/04, Dad taken off oxygen (back to normal levels). Offered soft foods but refuses anything other than liquids. He's running a low grade fever and has started making sudden jerks even while sleeping. Not really able to talk right now, but is holding his own and giving the Alz a fight!
8/8/04, Dad alert and trying to talk. Smiled and laughed a couple of times. He took a couple of bites of meat and potatoes (mashed) and then refused more. He appears to be having a difficult time swallowing. He did eat/drink all of his liquids today. Improvement over yesterday.
8/10/04, Was able to eat ground food and liquids. Will be removed from nebulizer tomorrow. It appears Dad has just about recovered from aspirating on the 6th. Hope this doesn't happen again soon.
8/14/04, Dad unable to wake up. Missed lunch as he just was not able to open his eyes or respond.
8/15/04, Dad alert and trying to talk. He was able to eat all of his lunch and was excited to see Mom.
8/19/04, Dad almost not eating again. Down to liquids and not taking a lot of them at that. NH had a dietician come in a watch him at lunch today.
8/27/04, Taking liquids only. Must be remind to open his mouth and to swallow.
8/30/04, Well the VA has decided they want Dad moved out and into a regular NH. After two years of care and now that he is in the last stage...they want him moved!!!
9/7/04, It's been awhile since I posted an update. Last week, the NH called Mom and gave her names of some homes they wanted her to check out. Mom explained to the social worker how puzzled she was that the VA wants Dad moved now that he's end stage. The social worker listened and promised to discuss her concerns with the nursing staff. The head nurse also approached Mom and said that he would talk with the social worker to see what could be done. Today, the Social worker met Mom at the door and told her that the VA has the legal right to move Dad, but morally, it's the wrong thing to do. Dad will continue his stay at the VA!!!
9/26/04 I haven't posted in awhile. There hasn't been much change in Dad. He eats very little (some days nothing) and sleeps most of the time. Seems unaware that we are there when we visit.
10/2/04 Dad was in bed asleep when we visited today. He sounds very congested. His chest rattles somewhat. Looks even thinner than a week ago. This could be allergies and asthma or it could be an infection hard to say at this point. Nursing staff says he's not eating right now either and is very tired.
10/9/04 Continues to sleep most of the time. Congestion seems gone for the moment. He's eating one container of high cal. frozen supplement and about half a glass of juice with thicken in it per meal. He is not interested in anything more.
10/18/04 Dad has developed another bed sore. This one is on is on his stomach, where his clothing touches his skin. This one has been caught early. I haven't seen Dad awake in a month or more now.
11/6/04 Dad was awake for today's visit! First time in what seems like months that I've seen him awake! He was happy and tried to talk. It was clear he knew we were family. What a treat for all of us!
12/12/04 Dad is still holding his own! He sleeps much of the time, but seems to be in pretty good health and still has an occasional smile for us!
12/18/04 Again, Dad still holding steady! Good to seem him eat a good lunch again. Although I can understand nothing he says anymore, he still has his way of communicating with me (us)! He winked at me three times on Saturday! Just when I think he's no longer behind those blue eyes, he finds some way of letting us all know, he's still with us! The winks were planned...they were not a twitch or dust particles in the eye. No, these were the winks from years past combined with a smile that point blank said "hey! I'm still in here and I know you are here with me!".
1/1/05 Could not wake Dad today. The congestion is back...no fever at this point. Congestion started yesterday.
4/9/05 I haven't updated for awhile as Dad has been pretty much the same these last few months. We made it through winter without so much as a cold! This past Thursday, he seemed to be a little congested. We visited today and he was asleep but making a gurgling sound. Could be that he's coming down with something.
4/13/05 We discovered to day that Dad has pneumonia. He's on antibiotics and oxygen.
4/14/05 The VA called at 11:30 last night to say that Dad was having really bad seizures. By 8:30 a.m. today, they had called and stated they thought he was having a bunch of "mini strokes". Did not seem able to swallow any longer.
4/15/05 Made it through the night without any new issues. Today, unable to wake up. He did take in a cup of liquid with an hour of coaxing.
4/15/05 9:19 p.m. Nursing staff called to say Dad was alert and unhappy with them for moving him. This is a very good sign! Amazingly, he continues to fight AD!
4/16/05 Dad taking in very small amounts of liquid. Eyes sore and red, cause unknown, sleeping most of the time. As of 8:30 p.m., his condition is described as "stable".
4/18/05 Dad doing well. Awake and will eat small amounts of cold foods (ice cream, juice).
5/20/05 Dad has pneumonia again. Started meds today.
5/21/05 Fever a little lower, eating some.
5/22/05 Still battling with the fever, but spirits good. Did eat a fair amount of dinner meal. Awake more today.
5/26/05 Nursing staff says Dad barely eats. He has lost four pounds in the last week.
7/1/05 VA called and said Dad is sick again. He has pneumonia and has had at least one seizure. On oxygen and antibiotics again. Also noted rapid pulse.
7/2/05 We were told to start thinking about what we want done if the antibiotics don't work.
7/9/05 Gave us a scare this time, but seems to have completely rebound once again!
8/25/05 Received call from VA stating that Dad has Cellulitis on his hand (skin infection). Antibiotics have been started.
9/10/05 VA says Dad may have suffered a TIA last night. Looks good, don't see any physical change. Won't eat.
9/11/05 Staff pointed out where they see the change in appearance. Around mouth on one side. Having difficultly using that side of mouth. Spirits good. Ate well.
11/8/05 VA called around 8:30 and said Dad had vomited. They didn't know cause, he was not acting ill. Would have doc check out lungs in the morning.
11/9/05 VA called about 8:15 a.m to say Dad vomited throughout the night. Condition not good. Call back a few minutes later and said his condition is serious. We all headed for the VA. 9:30 a.m, Dad's breathing very labored. Could not open his eyes, but would respond to our voices with raised eye brows. Head nurse asked if we wanted clergy called in. We said no. 10:00, clergy came in anyway and prayed for Dad and family. Asked if we had any questions about "the process". When asked if this is done for all patients ranked as in serious condition, she said yes and then quickly stated that other times when Dad was rated "serious", the paster may have visited when no one was around. 10:15, head nurse brought in cart with coffee, ice water, juice, rolls and fruits for the family. Very different from what we normally see. Really made me wonder what was going on. By 12:00, Dad's vitals had been checked again and his status changed to critical. The head nurse explained to us that this is the beginning of the dying process. Told us the best we could do is keep Dad comfortable. By 8:10 p.m., we believed Dad showing signs of improvement. VA staff disagrees and insists this is it. We (the family), know that it's not over until Dad decides it's over. His pulse has been two times his normal rate for over 24 hours. He hasn't eaten. Is on morphine, tylynol and antibiotics. They had been suctioning his lungs but stopped. They say the fluid is deep in the lungs. Mom is spending the night with Dad and will call if there is any change.
11/12/05 Showing signs of improvement. Breathing better, vital signs good. Moved from critical to seriously ill. In the afternoon, Dad actually woke up for Mom and talked (gibberish) a great deal. Mom said it was a great visit..just to see him awake and interacting.
11/13/05 Would not wake up. Moved back to critical status. No food or fluid in take at all. Each time this is attempted, he chokes. Swallowing reflex seems to be gone. Sleeping with eyes half open and not responsive.
11/14/05 VA called to say condition worsening. Temp high and back on morphine. Mom went to the VA and upon meeting with the doctor, called my brother's family and myself and said the hospital advised us to get there. Arrived at the VA around 11:30. Dad's breathing awful. Gurgling sound with each breath. Morphine given every hour. Temp spikes and then drops down to 97. Blue knees, known as modeling (sign of death). Head nurse said 24 hours at most. At 7:20, Dad's eyes opened and his appearance changed. Blue was visible on hands, feet and ear. He made several very labored breaths and then went silent. Dad's battle with AD ended this evening with his wife, kids and grandkids by his side. Age 67.
Dad we love you and miss you very much!
