62 year old mother (L) has Alzheimer's; she was diagnosed 1.5 years ago and is progressing quickly. She has been married to my father (T) for 40+ years and lived in same home for 30+ years. For the past few months, much of the time she believes my dad is a visitor in her home. She refers to him as the "gray haired" T, or as my dad but does not believe he is her husband. At times she believes that there are many people named T. She is also paranoid that things are being stolen and moved within the house due to not knowing who all is in the house (when in fact she loses, moves, and hides things). She gets upset when she rummages through paperwork and sees his name on their bank statements, car registration, etc. and is concerned that he is trying to take "her money" (they have had joint finances their entire life).
Her confusion about my father creates uncomfortable situations and conflict - I am trying to help my Dad not just try to reorient her as I know that approach does not work and that we should not be arguing with her, but am at a loss of what to do during these episodes that are happening more frequently. How do I help him manage this? I try to distract her or move the conversation to another topic but have also relied on a photo album that I put together with photos for them and our family to show how he has aged through the years. Has anyone else experienced something similar and what advice do you have for my dad and I? It is heartbreaking to witness this and I am fearful for his mental health and her well being.
* Perhaps the most you can do is show compassion for your dad as much as possible; and
* Continue to assess, perhaps with MD / social worker, how your mom 'feels' / responds thinking there is a stranger in the house. From her point of view, this could be very frightening to her.
* I applaud you for writing us here. The disease is so very cruel to so many in the family unit. Give your dad a hug for me. Gena / Touch Matters.
Read this:
https://www.verywellhealth.com/coping-when-loved-one-doesnt-recognize-you-97998
In part, it says: Tips on Coping
Acknowledge the Loss: As with other grieving processes, it's okay, and often necessary, to let yourself grieve this decline in your loved one. You don't have to be stoic, even if you've read up on what to expect and you know the change is coming.
Remind person with dementia: If you sense s/he doesn't recall your name or who you are, simply remind her/him once by saying, "We haven't seen each other in a while. I'm your nephew Sam."
Give Credit Where Credit Is Due: Remind yourself that this is due to the disease process and not a choice by your loved one. It's the Alzheimer's disease, vascular dementia, Lewy body dementia, or other types of dementiathat should take the credit/responsibility for the loss of ability in your loved one. When he remembers your sister's name and not yours, try not to take it personally, even if it hurts your feelings. Blame the disease.
Respond Gently: When your loved one doesn't remember you, your goal is to decrease her/his anxiety or worries, not increase them by pointing out that you've been married to him for 50 years and asking why he doesn't love you anymore. Instead, you can try to change the subject or sing a favorite song with him.
Validation Therapy: If your spouse continually refers to you as his/ her father, ask her to tell you about her dad, what she misses about him, what he looked like, what he did as a job, and what she loved about him. Give her the opportunity to share her memories of him, rather than try to force the issue and make her identify and remember you.
Photos and Videos: Show your loved one older pictures of family and friends to reminisce together. It's likely that she will remember more from long ago and this exercise may sometimes trigger her to recall more recent items as well.
Seek Medical Help: If your loved one's inability to recognize or remember others is making her (NOT you) feel anxious and frequently distressed, if her paranoia is affecting her eating or sleeping, or if she is fearful of you to the point of becoming dangerous to herself or others around her, ask MD about medications or other treatments that can address the cause of these behaviors and decrease her distress. While a physician won't be able to reverse her dementia, medical treatment can improve the quality of life for both of you.
Llamalover47
All of this is driven by the disease progression. It erases memories from most recent to oldest, so her memory 'timeline' may have reached the point where, to her, it's before she met your dad--she's 20 years old. The brain struggles to keep up by patching together what it can access. Since her neurons are compromised, the information she receives will be random, and her ability to understand and interpret information will be seriously affected. She'll put it together the best that she can...In this case the photo album will not make sense to her. Your idea to redirect is good, but don't redirect to something she's having an issue with. Also try to remove the paperwork and finances to somewhere only your dad can access-it's a trigger for her. A lot of times at this point 'out of sight is out of mind', so find a good secure place to stash things, or move everything to online banking.
I have a couple of things I really like to share because they helped me so much--
This is good reading for anyone who has a loved one with dementia.
http://www.dementiacarestrategies.com/12_pt_Understanding_the_Dementia_Experience.pdf
The Alzheimer's Org. has a great spouse forum that your dad might want to look over. It's not Alzheimer's specific. There were some recent threads from spouses whose loved ones no longer recognized them. There's also a caregiver forum--you might want to search the threads for tips, or post. There are links to resources at the site.
https://www.alzconnected.org/discussion.aspx
Now may be the time, as she's forgotten your dad and is uncomfortable with him in the home, to consider if a memory care facility will be helpful. It will ease the stress for him. I can imagine that she is requiring constant monitoring and he must be sleeping with one eye open. Good luck!
I am learning that white lies are OK when dealing with him and What I say to him is that the court is controlling all his expenses and accounts no one can touch his money until DRs send approval for release of funds, with that though your dad might want to change his financial information to be mailed to you or another trusted person. Or storing any financial information in a locked file cabinet?
I feel for your dad and family for having to go through this challenges, it is heartbreaking for families as I am dealing with the same situations and challenges and believe me this illness impacts every family member not only the patient.
Best wishes
It's the pain killer effect that helps the patient, not the anti-inflamatory effect as some people claim. Tylenol is not an anti-inflammatory drug like aspirin, Motrin, Aleeve, Ibuprofen, etc. (NSAID's), it's only an analgesic. Tylenol is considered a safe drug by many, because it's sold over the counter. However, it will damage the liver if abused. Many old people have a compromised liver.
It's time to jive her to a memory care facility. It's not fair to your dad to have to put up wroth this. After bring married all those years, i know its very hurtful to him and he doesn't deserve it. God luck.
I strongly suggest getting your father involved with a dementia spouse group.
I am not at all familiar with any medications for memory. As far as I know there are none that have been clinically proven to improve memory or even slow the progression of Alzheimer's. There are claims that will state "improves memory" or "slows progression" that are often subscription based. All are scams. There are some clinical studies that are occurring, you could make phone calls to the Alzheimer's association to learn about those. Doctors are rarely aware of those.
Always do your own research on legit sites. I have no faith in richson's response.
What memory medications is she on, including any to keep her relaxed?
Tell me about her diet, her activities, who is with her daily, weekly, when she goes out and how many times a day/week/month.
Have some name plates made for the bedrooms like Emilie's Bedroom, Emilie's Kitchen, T's Study, etc.
Put picture of everybody she remembers from her earlier life up on the walls in the den, dining room, her bedroom, is she has a sewing room (Emilie's Sew Room), put them in there. And talk to her about the things SHE is familiar with. She should remember your dad as he looked when they met, so use those to show how he grew up alongside her.
Along with that, find out which songs she remembers and likes to sing. Your dad and you, can use those songs as a point of contact to restore her confidence in you both. Learn to appreciate the value of those songs, and sing them as you go into her room. If she sings a song, learn it. It she makes one up, great, learn it and sing it too. Even if it's simply a tune. Record her singing and talking in more lucid moments where maybe she's singing, humming, and your dad and she are talking. Then use that recording so it awakens her that these are those persons. Maybe you and dad play that, and she's curious so she listens, and you and dad sing that song, and she begins to realize that's her and him on that recording and she's having fun with him, and that will put her at ease and learn to facilitate her to join in with you. Many ways to use a tape recording like that; your dad can just play it, saying, Oh look at this. It's you singing. Turns it on and she listens to herself, and then it comes to the part where he began singing her song with her, and now she realizes that's the man on the tape, he's right there,, and the tape shows she was having fun, and the tape doesn't lie. She trusts it.
You can give her lorazepam, most likely, which will help her have confidence in who you guys are. Usually one starts with 0.5 mg daily and increases it over so many months as the need worsens up to 6 mg daily, at which time most doctors will want to take her off of it and replace it with valium.
If she has no liver issues or high blood pressure/heart issues, you can give her an OTC pain med daily. If you love your mother, you will take her off every OTC pain med except two things: if she's not on tylenol, start her on it right away. They have liquid cherry flavor. Use that. Your mother, if she has alzheimer's or dementia, or AD, is suffering from a highly inflammatory condition in the brain, which is causing the brain and body to overwork itself just to catch up with dealing with the inflammation. When other injuries or repairs are needed in the brain, as they occur constantly throughout the human body, including the brain, her poor brain is spending all its resources on fighting inflammation. Tylenol is THE ONLY NSAID THAT GOES INTO THE BRAIN. IT IS THE ONLY NSAID THAT CROSSES THE BLOOD BRAIN BARRIER. I'm going to guess your mother is not a big Tylenol user, am I right? Beleive it or not, if you will tackle the brain inflammation going on in her dear head, the brain is capable to heal itself, just as it does when there is a contusion from a blow to the head.
How much a day? I gave 333 MG daily, half of that at 10 AM and half at 10 PM in a drink of Pedialyte mixed with water or strawberry ensure. (Always keep her electrolytes up, and make sure she's never low on B12.) Every day without missing any. I was able to completely remove my last patient from 4.5 mg Lorazepam daily down to 0.5 mg daily just by adding the Tylenol to fight off the brain inflammation. Don't give more than that. Always give it in two doses to help the body more on a steady stream rather than one giant dose which overloads the system, understand? Just adding that, I turned around an extremely late stage AD patient from 4.5 to 0.5 over 1.5 years instead of increasing her.
All I can do is tell you the truth. that's the truth of it. Now it's up to you.
Get all the paperwork out of sight, and tell your father to be glad that your mother likes him, even if she is very confused about the details. It could be good if the charade worked!
My mom took Seroquel, 12.5 mg at about 4 pm each day which helped most of the time. But, there were still those days. Mom's complete disorientation was associated with her Sundowning most of the time.
Put the bank statements away so mom does not have access to them. Do not leave anything out that may cause her anxiety. It sounds like it will become necessary in the near future to place your mom. Have you started that shopping? See an elder law attorney to prepare for protecting assets for dad. Do not delay.
In your dad's case, he is probably resigning himself to the idea she truly does not recognize him any more. Sometimes it is easier to think of it as your mom has had a series of strokes that have robbed her of her memories. Photo albums are a great idea. Please talk with your dad about streamlining their home - or areas that mom utilizes - to cut down on her hiding/forgetting/accusing behavior. It might also help to have the mail sent to a P.O. box or have your dad collect/sort the mail in a room she will not go into (his study?). She will also benefit from a fairly strict routine throughout her days and weeks. The consistent environment and routine should help with her anxiety. If this doesn't work after a trial period of a few weeks, talk to her doctor about a prescription for a mild anti-anxiety medication to help her relax.
This reminds me of Barry Petersen, a reporter for CBS news, who did a story years ago about his wife's early onset Alzheimer's. I remember seeing that story long before I ever had to deal with dementia in my own mother, and it made a huge impact on me. All I know is that I'm eternally grateful that my dad didn't live to see my mother "marry" her first high school boyfriend and talk incessantly aoout him while forgetting my dad completely.
As Grandma said above, her reality is her reality, and there's nothing you can do to change that. Your dad needs to go along with being the visitor, but he also needs to get out and be with people who are healthy and functioning. Try to encourage him to get out and do other things.
You can find Barry Petersen's story on YouTube. Search "Jan's Story" to find it. He also wrote a book about it -- Jan's Story: Love Lost to the Long Goodbye of Alzheimer's. It might be helpful to you and your dad.
While redirecting is sometimes possible, often times it's not as you're finding out. You may want to have your father talk to her doctor about giving her something for her paranoia, and see if that won't help calm her down some.
At this point your father may just always be known as a "visitor in her home," but hopefully overtime she will know him as the really nice visitor in her home who loves her.
Things with Alzheimer's/dementia are constantly changing, so hopefully this phase won't last too long. Just remember that things won't get better until they get worse. That's a line that is used often in my caregiver support group when talking about those with any of the dementias.
I wish you all the very best during this trying time.