Hi - my mother has dementia. She hasn't been officially diagnosed with Alzheimer's, although all other dementias have been ruled out. She is 86 years old and up until June of this year she was living on her own and functioning quite well. There was some slippage that we noticed, but not enough to warrant a red flag. In fact, in late May/early June she was still driving.
In June, she started to have some issues, she thought she couldn't urinate, turns out she wasn't drinking enough water. By mid-June she had not eaten or drank enough that her sodium and potassium levels were so low that she fell, and became delirious. After 5 days in the hospital, she bounced back a bit, but was very confused. The doctors said that she likely has been masking her symptoms for a very long time. We were told she had moderate to severe atrophy, irreversible. After the hospital stay we had her in a short term rehab facility and then to an assisted living facility. She now has a 24/7 aide and 2 weeks ago, she and her aide moved into my house. Her short term memory is pretty much gone, and she has progressed rapidly since June. She is in complete denial and doesn't think anything is wrong with her. She is also very quick to argue and lash out at me and the aide. And that is uncharacteristic of her. With others, she is fine, and appears to be quite normal (on the surface).
I really don't know what to expect. She has progressed so quickly, am I to expect that she will continue to progress this quickly? From what I can see from the guides, she is between stage 5 and 6. She needs help, but can still express herself quite well, and shower on her own . She has a lot of trouble with immediate short term memory and her generations are all confused. She thinks her brother is her father, my daughter is her daughter, and I am her mother.
She was on aricecpt, but they took her off because she was semi-violent (smashed her hearing aid, threw a shoe in anger and it hit me), and was hearing voices at night. She is now just starting Namenda but I question if 1) will it do anything and 2) are we just prolonging the agony? She is miserable because she realizes something is not right and working so hard to correct it so she can go “home” and have things the way they were. This causes exhaustion and the end of the day is particularly confusing and all around a bad time of day.
As I said she is 86 so late for this diagnosis. Nothing I've read is geared towards someone with a late age diagnosis, and no one can really tell me where she is in this horrible disease. I just want to prepare for what is coming and how long she will be able to stay with us. Do you have any ideas/thoughts on what the prognosis and future look for us? I appreciate any insight you can offer. Thank you for your time.
Hello Elizabeth: I'm very sorry to hear of your mother's issues--I'm sure it's very upsetting for you and your family. I will try to answer your questions.
I think the doctors were correct in saying she's probably been masking the slow deterioration for a long time and it's actually not unusual for an emergency event to unmask it. Experts are now thinking that Alzheimer's takes years to manifest symptoms. Age is the biggest risk factor and after the age of 85, the chances are almost 1 in 2 for some type of dementia. Any time a person has delirium, that will increase the chances for a dementia to present. The fact that she seems to be progressing quickly may indicate that it will continue on the "fast track" until her death. There is no way to tell how long she may linger, but usually if the symptoms show up fast, they continue to progress in a more rapid manner. Her mood/personality changes are not uncommon and it's ALWAYS a big guessing game as to what meds may work and for how long. I've seen some real progress with Namenda, so give it a chance. Could she be depressed? If so, she should be treated for that since a true, untreated depression will hasten the dementia. Let me ask you if you think she might be more "sociable" in a facility rather than with you? It's not uncommon for the elder to take their frustration out on their loved ones but are pleasant and calm with facility caregivers. If her being with you is significantly impacting you and your family's life in a negative way, then please consider placing her in a facility. She may be unhappy no matter where she is, but you must protect yourself and your family too. On the other hand, she may do well in a facility as long as she has hope she will get what she wants--to get better and go back home. Even though you know that won't happen, she must have hope that it will or she will continue to act out and be upset. Keep trying to keep her calm with things that she enjoys (music, flowers, walks, animals, children, etc.), and give her hope with statements such as "I know you want to get better mom, and I want you to as well, but we have to wait for the doctor to tell us when it's time for you to go back home--maybe next week!"
She will continue to decline and will likely become more resistant to care unless that part of her brain becomes affected and she mellows out a bit. I would advise you to not focus on what stage she is in, but rather where is she right now? She will fluctuate and have good and bad days, so meet her where she is at that moment and try to keep her calm moment to moment. She may be sundowning near the late afternoons and that makes her more agitated, so possibly keeping her more active during the day may help a bit with that. She will definitely challenge you in many ways Elizabeth, so I hope you can meet the challenges and make the decision to place her if you are suffering. You are waiting for the crisis to happen--a fall, a urinary tract infection, or choking on food or fluids. Even in a facility, a crisis is likely to happen, so you must be strong enough to handle it when it occurs. Even if you cannot place her now, I suggest you get on waiting lists so when the time comes, you've already done that work ahead of time.
I wish I had some positive news for you Elizabeth, but the sad reality is that this is progressive and you can only hope for another mood/personality change for the better. In the meantime, be sure you're not interacting with her in a way that makes her worse--don't argue or try to remind her of what is reality. Apologize for everything she thinks you do wrong and promise to not do it again. It may be helpful for you to read my book "Love, Laughter, & Mayhem - Caregiver Survival Manual For Living With A Person With Dementia" for tips on that. My prayers are with you. Cindy