Dear FRiends,
My sister sent me the list of medication changes last week via email. She suggested that if I have questions, I should contact Mother’s palliative/hospice care nurse. After researching the medications - yes, via internet - and taking notes, I called hospice and was informed the nurse is on vacation.
I am now reaching out to friends who have experienced this situation with a parent or who are nurses.
The caregivers who speak with me state that Mother stays awake most of the night, sleeping during the day. I have also been told that she hallucinates. Although my sister tells me that Mother cannot feed herself, I watched her enjoy a bowl of ice cream. One of the caregivers tells me that Mother remembers the bathing routine but cannot bathe herself without assistance.
When I was home a few weeks ago, she slept all but about twenty minutes of my two-hour visit, during which time I led our conversation by reminding her of events/people she has often fondly recalled. She was able to participate cogently. When my family joined me about a week later, my husband and son had to support her while she walked/shuffled to the car. We drove to the church, homeplace, and family cemetery. I honestly cannot say whether or not she knew who we are, but she did recognize the church and the cemetery, which she noted had not been properly cared for as the grass looked not to have been cut all summer.
During our last two telephone conversations this past weekend, neither I nor my husband could understand what Mother was saying/talking about. She was confused - not unusual, rambling, not making any sense, and slurring words - all unusual to our almost-daily telephone conversations.
If you can/will assist me, I am very much appreciative.
Most sincerely,
~ lyby
“neither I nor my husband could understand what Mother was saying/talking about. She was confused - not unusual, rambling, not making any sense, and slurring words - all unusual to our almost-daily telephone conversations.”
It could be medication, it could be dehydration.
They will sometimes “monologue” where they just go off talking without a break.
I’m sorry you are going through this. My MIL had dementia, not Alzheimers. One of the 1st symptoms was the loss of the ability to tell time, like morning from night. We had her in an Assisted living facility and she probably did ok for about a year with that, but eventually had to move to a nursing home and then Hospice.
If your mom has Alzheimers, I believe there are drugs that could show down the progression.
Hospice is usually for care when reaching the end of ones life. You do not tell us if your mom is there due to illness or anything regarding her usual state of health.
Mental changes can be slow or acute in elderly patients but, as you describe her disorientation during your last visit, I guess this is been ongoing.
Go and see her and tell her stories from the past. She will relate to these better than any recent events. Give Thanks for the time you have and you will both be better for it.
Praying for you both.
My mother’s hospice nurses recommended leaving a light on in her bedroom when she started hallucinating; the shadows present without a light would morph into animals or people.
We also made picture books from photos taken 40 years earlier, and she enjoyed looking at them with us because she recognized everybody and every place.
I sincerely wish you and your family strength during this incredibly difficult time.
This is a much better one to answer.
They sleep ALL of the time! They are worse than teenagers, up all night and sleep all day.
If she is forgetting how to eat and bathe, she is getting pretty far along.
Telephone calls will be near impossible. First of all, their hearing is bad. Next is that most communication is visual. They take their cues from who they are talking to.
They also start a process where when they get confused and they start talking in what I refer to as the infinite loop—the same phrases, stories, or complaints. Over and over. That is because it is comfortable to them. If you are not exposed to this regularly, it is very disorienting.
I find that I listen to my mom and when she goes off on a tangent I just let her go. I laugh when she laughs. I nod when she is intent. It doesn’t matter. She is not going to recall it in ten minutes. What does matter is that you are there.
The thing is dementia meds is they do not stop or reverse the process. They simply make the path a little smoother.
My mom will sleepwalk, and hallucinate. I often hear about the visitors she has. (Most of them died years ago.)
I think the best advice is this: If you are not the primary care giver, be aware that you are going to disrupt the routine. I dont mean that in a bad way—but you are different and these folks need their routine. So expect anything and everything.
Also, your mom is happy to see you. She might be confused and she might not seem to care. But she does.
This disease is a disease of the personality as much as it is the body. Your mom’s brain is trying like hell to process information, but the wiring is being re-routed and it isn’t working right. She may swear more than she used to. She might not know you. She may relieve herself in the kitchen. None of this is intentional and she has no filters or sense of propriety. Seeing your mom function with just a “lizard brain” is disturbing as hell.
But, you are doing a good thing. She needs you. Keep a sense of humor. And understand the woman you are visiting IS your mom...just a bit “off.”
OK, I’m reading through this thread and see this... “Mother’s palliative/hospice care nurse...”
I’m gathering time is short. My prayers are with you. Make the best of what time you have left. Even if Mom sleeps through your visit, or does not even recognize or remember; go see her.
Visit. Visit often. I drove 600 miles (each way) 4 times in 6 weeks to see my Mom after she had her stroke and before she died. You won’t regret it.
Prayers......
I am so sorry. This is a tough thing for anyone to go through. I am in the same situation with my husband. It seems to be even harder on our children and grands, when he asks:”who are you?” Funny about the ice cream! My husband prowls all night, and in the a.m., all the cookies and ice cream are gone! You are lucky to have outside help. Count your blessings!
It’s so tough to watch the decline. I’m sorry you all are experiencing this. A family member has also been diagnosed with dementia and has been moved into an assisted living facility. What the primary care giver has observed is that she sounds completely off when she has a UTI. I’ve heard of this from other people as well. Certainly, it ties into the dehydration that someone else mentioned, but if she sounds more confused that usual, it might be helpful to get a confirmation and a round of antibiotics.
Since she is a woman, I would suggest that the first thing you do is go to a pharmacist about her list of prescriptions and OTC medications.
Next, and this is important have her checked for a UTI (bladder infection). It is amazing how much the elderly are affected by them and have mental issues because of them.
I will tell you that in my experience Alzheimer Patients HATE to bath, I don’t know why.
After a 1 month hospital stay he has psychological issues including confusion, insomnia, delusions and hallucinations.
Doctors and nurses said Alzheimer's or dementia.
Through our own research we discovered that he had Hospital Delerium and got him back with no help from the medical pros.
Other things that have caused those symptoms for him the last few years are medications, pain, lack of sleep, urinary tract infections, dehydration.
Don't take the medical professionals word for anything.
Do your own research, challenge them, ask questions, demand answers.