Alzheimer`s Disease/Mixed Dementia w/ Multimorbidities
My father has been diagnosed with mixed dementia. At first it was vascular and then Lewybody, but he actually showing signs in all areas, thus the new diagnosis.
He has lived with us for the past 1 1/2 years. When he came to us, it was due to a hospitalization for acute renal insufficiency. We were advised that he may be having heart problems as well, but they were unable to address them at such a small hospital.
W/in a week he was diagnosed with Sick Sinus Syndrome and had a pacemaker installed. He already had high cholesterol, high blood pressure, sever anemia, severe degenerative disk and cervical disk disorder and was diagnosed with Diabetes ll as well as gout.
He was very soon afterwards diagnosed with severe polymyalga rhumatica (PMR) of which he had to receive very high levels of predinisone to counter balance it. We now have that tapered down to 5 mgs a day.
He went home for Christmas and got back the 2nd of January. His blood sugar was sitting at 800. He was in the hospital for 2 weeks while they attempted to get in under control or at least down to a level that he wasn't rising or diving too quickly. He is now insulin dependent. Humalog on sliding scale during the day and Lantus at night. He checks his blood sugar 3 to 4 times a day.
We could tell that his mind was not where it should be and had him checked out with a psychologist. He said at the time he was diagnosing him with mild vascular dementia after doing CT scan. He was placed on Aricept, but we saw no changes except for the worse.
He was also soon diagnosed with chronic COPD/emphasema (Spiriva and Advair). He was too sick to go through the pulmonary rehab. A colostomy and endoscopy soon followed. We found that he had stage 2 colon cancer (6 inches of his sigmoid was removed) and he now has a permanent colostomy, due to his sphincter muscle no longer working properly. The stoma has severely herniated and the surgeon refuses to touch it, with all he has going on. Can't say as I blame him.
He also found that he had multiple pieces of "stuff" stuck throughout his esophagus and was unable to do a biopsy of his stomach. He was diagnosed with a yeast infection of such and prescribed an antifungal medication to combat that. He spent 35 days in rehab getting well and learning about his colostomy. We saw even more rapid decline while he was there.
Within less than 60 days, he developed double pneumonia that led into congestive heart failure. His body swelled so large, I thought he was going to pop by the time they got him into ICU and put in on heavy duty diuretics. This time he stayed in the hospital for 2 weeks (bed sores) and was also diagnosed with left ventricle prolapse, his blood flow was compromised by about 30% and he was diagnosed with CAD in his major arteries. He spent almost 2 months in rehab again.
He is on about 30 different medications, which equates to about 50 pills a day. He can no longer walk very far, snores terribly (probably sleep apnea but we've been told there is no since in even bothering), hears a females voice yelling at him occasionally at night and honestly fears that it is the Devil coming for him.
I have a full DPOA and he has a living will;DNR. His has no cognitive skills, he forgets to wash his hair and sometimes bathe, so we remind him. Forgets time of day, days of week, month of the year, what he has eaten and when he last ate or what meal it was. Social behaviors are inappropriate for various settings and doesn't gets lost in most any conversation.
We monitor and disperse all his medications; though there are many occasions that we find that he has missed his mouth and they wind up on the floor.
I've asked and no one has been able to tell me what stage he might be in (I believe stage 5/6) and due to his multmorbidities how much longer he may have to live; only that he will die a "dramatic death!"
To me, that's saying a lot and nothing at all! I currently have him going to a senior center during the day, as we really need a break and there is no money for respite care, but since no one can or is able to tell me how much longer he may live, I have no idea when to get in touch with hospice.
As I see it, he just may not wake one day and it will be all over or he may die right in front of the world.
It is impossible to make any type of arrangements, when no one can tell what the prognosis is.
Can you help?
Wow--Suzanne! My heart goes out to you, your family and your father! What an awful way to end your life with so many painful and prolonged illnesses! In this case, I think it's a blessing that he probably can't remember how sick he is. You give a very detailed medical picture and I thank you for that. That being said, please remember that I am not a physician and this is only my best guess based on what you've told me.
First thought--get the doctor to allow hospice to just come and see him and give their opinion on whether he's appropriate now. If they don't think he's ready yet, keep trying because it will be a blessing when they can help you out. It may also be a blessing if it's decided to place him on hospice and begin to wean him off some of those meds that may just be prolonging the inevitable for now.
Kudos to you for taking him to the senior center. You must continue to find ways to get a break away from your caregiving stresses and it is helping keep him socialized, stimulated, and likely helps him sleep better. Also, are their friends/neighbors/relatives who would be willing to just come and sit with him an hour or two here and there that would allow you a break?
Know that it's always a guessing game when it comes to medications and elders with dementia. What works now may not work next week. It's also a guessing game as to how the vascular diseases will play out, but I have to say it doesn't sound to me as if he can hang on for even another year with all those issues. His organs are beginning to fail and that won't improve, especially since he has compromised blood flow and diabetes. With all this going on, I'm amazed he's not yet in a facility, and it's a testament to you and your family that you can still take care of him at home.
I never like to "stage" dementia since it really doesn't matter what number you put on it, what matters is that you meet him wherever he is in this moment, on this day. It does sound as if he's in the later stages though and I understand your wanting to know more so you can make some decisions.
My advice is to keep asking yourself: "Can I continue to care for him here?" If it's getting close to the point where you're saying you cannot, then visit some facilities and get on their waiting lists. If he has a stroke, or becomes unable to ambulate, and you have to place him, then that legwork and paperwork will already be done. In the meantime, if they say they have a bed available, and you're not ready to let him go, then you just ask that he stay on the list.
Ask yourself: "Would Dad want to continue to live like this, or would he say 'Just let me go peacefully?'" If your answer is that he would say "Let me go peacefully," then that would tell you to get him on hospice and get his meds thinned down to what he needs to prevent pain or illness only--not to what is prolonging his life. Very tough question to ask and even tougher to answer. My father (who had LBD) spent a few weeks in the hospital and said "I never want to do that again." I asked him "Dad, what do you want us to do if you get that awful bladder infection again then?" He answered, very clearly "Just let me go! I don't want to live away from Mom (his wife) like that again." That answer made it easier for my mother to make the hard decision to place him in a facility when his cognition worsened, and he couldn't walk. We all breathed a sigh of relief at that because we were fearful Mom would die before he would from of the stresses of caregiving. If he does have LBD, then that means he's even more sensitive to medications than he would be otherwise, so it's another complication in his picture, and a good reason to try to get rid of some of the meds if possible. If he has a history of renal insufficiency, then all those meds he's taking are only getting partially metabolized, and his kidneys are continuing to weaken. If his vascular system continues to function, it's likely his kidneys will begin to shut down and that may lead to his death. That's not a painful way to die from what I've seen as they just drift into a coma from the toxins in the blood. The reason I mention this is to make you aware of that possibility and to not be afraid of it happening since given all his other issues, it may be the kindest way for him to go.
I'm not sure why you were told of a possible "dramatic death," but I think it's just as likely that he will either have a major stroke, heart attack, infection or kidney failure. Is it possible to get him to a geriatrician, or neurologist just for a consultation in order to give you a better idea of his prognosis?
I hope I've been able to provide you with some comfort and direction Suzanne--I wish I could do more. I will pray that you and your family find the strength to continue on and for your father to have a peaceful passing.