My dad is living in AL, but only AL helping with administering meds. He has dementia. I guess it's Alzheimer's - that's what the doctor puts on his records.
My mom passed away XMas 2009. I moved him Nov 2010. My sister (56) passed away July this year.
He calls me every single day - most times about six times each day. He wants to know where both my mom and sister are. He'll say that he just saw them/heard them in his room, etc., and doesn't know where they went. I'm exhausted repeating myself - not to mention how painful the whole situation is. He also keeps getting boxes and packing up his belongings because he "is NOT staying there."
I do what I can, but I have a young child (& work) and I need to be there for her. This is really bringing me down.
I tempted to say they went on a trip or something! But, even if I do, it just opens the door for more questions/confusion. My husband doesn't believe I should tell him anything differently than they passed away: "they're gone". I just feel like crying. I'm also very stressed because I keep worrying that they will kick him out of the AL at some point in the future.
What do I say to him? The only other thing he says is that he's bored! I dread the phone ringing.
And I tend to disagree with repeatedly telling someone who can not comprehend and remember that the people they love are dead. If he can understand and retain the information then by all means be honest. But if he is told and forgets repeatedly, then why keep repeating the same painful answer? Each time you tell him this he will experience the fresh sharp pain of new loss and grief, only to forget and repeat the next time. Yes, this is what I would do if the person was cognitive aware and able to understand and remember but it is not appropriate for someone who is incapable of retaining that truth.
I went through this with Mom when my Dad died. She was beyond the point that she could comprehend and remember. She did not go to the funeral and we did not tell her of Dad's death. She did ask about him and we told her nothing more than Dad was ok. I would say, "I know you miss him" to let her know that I was hearing her and validating what she was saying. If she would ask where he was, he was at home with his Mom. After a while she stopped asking.
The repetition you get is because his brain is unable to refocus. This is one of the consequences of this disease. If it were not these questions, it would be other questions over and over. Something is not right, they can not understand and retain the information necessary to right their confusion, so it goes on and on. Framing the answer in a way that it is not emotionally distressing will help to lesson the stress and thus lessen the need to repeatedly ask.
Yep, it is frustrating to us to have to answer the same question over and over but can you imagine what your Dad is dealing with. He doesn't remember where the ones he loves have gone. He is not sure where he is and why. He only knows that people are missing and he is misplaced. His brain is not allowing him to comprehend or remember. By giving him a compassionate answer each time you are helping him, in the moment. That is all he has, the moment. The brighter you can make the moment the more content you will both be :)
As for being bored, he is probably having difficulties socializing (part of the disease) and difficulties keeping up with the activity schedule (part of the disease). Check the calendar each week and find activities he might enjoy. Then ask that he be included in these activities. Ask that someone go get him rather than expecting him to voluntarily go. You also have to remember that he may not remember what he does during the day. What he may be saying to you is that he is bored in the moment. He might have just gotten back from a delightful lunch with a group of friend, but in the moment he is bored and why he is on the phone with you. I got many of those calls from Mom and would just talk to her until she was ready to do something different. Sometimes, in the moment, I would rather be doing something different. But when Mom lost her ability to call me and complain, I sure did miss those calls :) It is all a matter of perspective and try to enjoy the moments you have with your dad, even if he is complaining in his confusion :)
If he is anxious and acting out in the AL, they may determine that he needs a different level of care. You may want to talk to his doctor now about his anxiety because there are medications that can help lesson his emotional distress. This is not for the facilities benefit but for your Dad. If he is acting out, then he is in emotional distress which is emotional pain. We need to treat pain. Something as simple as an over the counter NSAID may be helpful. To the brain, pain is pain. He may need something stronger. In many elderly dementia patient Xanax and Ativan side effects are the exact behavior you are trying to alleviate. But there are medications such as trazodone which can be very helpful. Check with his doctor if his behavior is out of control. You may also want to check into a smaller dementia unit. Mom and Dad did much better in the smaller unit designed for those with dementia. They were given much more assistance and appropriate stimuli. Being smaller was less confusion. If you check out what is available in your area, you will not be caught ill prepared if the worst should happen. It is better to be prepared than caught unaware :)
I am so very sorry for all of your loss and now dealing with your Dad's dementia. You have been through so much in such a short time. My thoughts and prayers are with you for the strength and courage you need.
GoGo, I really feel for you and your father! My MIL has just been diagnosed with dementia and when we first moved her and my FIL into their new living quarters, (Assisted Living)which took almost 2 years of persistance! :round: both kept insisting they were not staying! My MIL kept asking, demanding to go home! It was only after reading on this forum that it dawned on me that she too, was not longing to go back to her old house, she wanted to go back to that place in her mind before her dementia began! I am so thankful for this forum and all the information I have been able to obtain because her doctor's aren't very helpful! Now I know that when she asks questions repeately, it is the disease talking, not her and I think I agree with Gabriel, sometimes it's best to deflect the question, or simply not keep repeating the cold hard truth when the patient cannot retain the information. My husband is really having a hard time with this, he keeps getting angry and frustrated with his mother. I know this is a stressful time for you, I hope you have a support system, if not, then keep coming to this forum, because it has been a God-send to us! Ruth
Good to hear from you Ruth :) It is difficult for some (men in particular) to understand that you can't reasons with dementia. You have to go where they are and give them what they need. It is hard to accept that they have a disease which takes away their ability to think as we do. It is not just a memory problem. We can't just tell them until they understand we are right. It is a brain disease that takes away so much of their ability to reason, think, comprehend, understand, and then remember. Trying to bring them back to our world is only frustrating them and us. :) Once you get it, it is easier.
Gogo, what your Dad is displaying is agitation caused by anxiety. They do not have to be manic or agressive to be agitated. How many times have you just been agitated without throwing a complete fit of anger? The whirling thoughts in his head that he doesn't understand is causing him stress. There fore the packing and desire to go somewhere else. I probably did mention the fact that PRN medications were usually not helpful. First, you are always chasing the anxiety. They get anxious, and then the medication is used. Why let them get agitated at all? Second, the care facility is not good at picking up on the anxiety early. It is only when the agitation interferes with their daily routine that Dad is given his PRN. Sad but usually true. If anxiety is present then it needs to be effectively treated on a consistent basis. I am not talking about heavy sedation. Just enough to take the edge off the anxiety. It may take several tries to find the right medication or combination of medication. Yes, what you want is just to relax him :) Then life will be better for him and everybody else.
Mom was my anxious one. She was always looking for a way out of there, how to go home, and packing up. She was going to hire two men and a truck, pack up, and ride in the cab with them to "home". Yet when I did take her back to the house she lived in for over 50 years, she had NO clue where she was. She did become aggressive and manic to the point that she spent 10 days in a good geriatric behavioral medication unit. With the right combination of medication, her last 4 years were very peaceful. I had to smile remembering. Mom used to pack up and move her stuff either to the office or take it to the court yard throwing it over the fence. I rounded the corner one day and my little 5' 100 pound Mom was pushing a 9 drawer dresser with mirror down the hall!! I had to remove every container including the laundry hamper and trash cans so she would not have anything to pack in. She just took out the dresser drawers and packed in those. :dizzy: You have to laugh!!
One thing you might want to do is check for a UTI. Any sudden change in behavior can have it's roots in a UTI. They can either become overly excited or lethargic. I would definitely have a urinalysis done before anything else. If it is a urinary tract infection, which is very common in those with dementia, an antibiotic is better than any psych medication :)