Parent with Alzheimer's: how do you handle all the phone calls?
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Anonymous
| My dad has Alzheimer's and is in the early to middle stages of the disease. the situation was somewhat stable but after my mom passed away my dad is now living with round the clock caregivers. One question I have for people going through this is how they handle all the phone calls. My dad constantly calls me at work and at home and a lot of the time I can't really pick up the phone. I am often in meetings or giving presentations and can't talk my dad down from a panic at the drop of a hat. and my evenings are spent with my own young kids. Also, I need to sleep so turn my phone off at night so I miss the 3am calls. My brother can more easily pick up the phone but he has a life and a job too. I can call every couple days and visit often but I can't really be reachable all the time. How do others handle this? Do most people have lives where they can constantly take these calls? I have tried to explain to the caregivers that I can't take the calls most of the time but it is hard for them to fully control my dad. |
Anonymous
| I'm impressed he can use the phone. I would talk to the caregivers and ask that they block the calls and call nightly as a compromise. |
Anonymous
| Is he showing other signs of heightened anxiety besides compulsive calling? if so, might be something meds can address. Anxiety meds can be a godsend, but in our case the expression of anxiety was nasty fits, obsessing over things to the point of misery and needing to control everything. |
Anonymous
| Tell the caregivers to unplug the phone and tell your dad the phone company is working on fixing it. |
Anonymous
Mom has late stage alzheimers. I like the above suggestion. Also, have the caregivers use a technique called redirection. If he wants to call, they change the subject. REad up on redirection. This is a good skill for the caregivers to use. We never had to use anxiety meds. |
Anonymous
| My grandmother had dementia and man there was while where she was dialing everyone in her phone book. We eventually had to lose the book. |
Anonymous
This. It's really easy to redirect with some small fibs. Tell yourself that this is what will allow you to keep up the caregiving in the long-term and not burn out in the short turn. It's being repaired or you are away or you can't be reached etc. |
Anonymous
| OP here. thanks for the advice. We are putting my dad on Seroquel but we are still figuring out the right dose (and are starting with extremely low dose) so calls have not stopped. When my mom was alive it was easy for her to redirect my dad. After her sudden death it is trickier with the aides. My dad doesn't trust them since he doesn't really understand who they are or why they are there. They try to redirect but he is extremely stubborn. Often they are the ones calling me to have me help calm him down, but I really don't have the bandwidth to help and it is difficult to help on the phone. I have young kids and a demanding job (my dad was diagnosed with Alzheimer's at a relatively young age). At times he thinks the caregivers killed my mom so understandably he is upset -- I would be upset too if I thought I was locked in an apartment with my spouse's murderer. |
Anonymous
| Be careful about seraquel. Side effect can be sudden death -dangerous drug. Also caused my mom to start to have tardive dyskinesia. There are better drugs our there. As for calling-you should call at least once a day and it will make you feel better. I have young kids/depending life and I get that call in and it means a lot for both of us. I do block calls after 10 and facility also helps with this. I do not feel guilty because I call everyday and also visit. Remember this is a marathon not a sprint so do what works. |
Anonymous
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Just let them go to voicemail if you can’t pick up. Don’t make the caregivers restrict his calling to you. That could increase his anxiety and make him even more resentful of the caregivers. I say this as someone who was caring for my parent with dementia all the time until we finally got twenty four hour care in place. I still call and visit a lot. Pick up the calls a couple times a day and call yourself at least a few times a week.
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Anonymous
Hi OP, This is a rough disease. Does your Dad do exercise? We found that really helped with Mom over the years. We had caregivers taking her out for walks every day unless it rained. Mom was always a walker pre alzheimers. The walks kind of wore her out a bit. Does Dad have other activities? Raking leaves etc? Does he do chores? Hitting golf balls? If you can keep him on a schedule with activities/chores that will help. I am not in the DC area but there are some free day programs where the caregiver can take Dad to the free day program of activities and lunch. Diet is important too. We've found eliminating sugar and and processed foods and eating lower carbish and plenty of fats helps her cognition. We find caregivers that have actually worked on a lock down dementia unit do better but are hard to find. The caregivers should be able to function on their own without calling you. It is okay to tell the caregiver that he can be in one room and they can be in another. We've had problems with caregivers "hovering" over Mom and that increased her anxiety. You can get a nanny cam for caregiver if they are in another room. The alz.org website has some non drug anxiety reducing techniques the caregivers can use that we've found helpful in the past. I printed it out for our caregivers. Dad died about 1-1/2 years ago but Mom still looks for him. dementia patient "Where is George? Where is my husband? Where is George? ....endless cycle of repetitive questions caregiver "George is in on a business trip. He is a very good husband. You have been married a long time. What do you want for lunch? Do you want chicken or do you want a hamburger? dementia patient again "Where is George?" I want my husband." caregiver "George is on a business trip. We are making lunch now. Do you want chicken or hamburger? Consider coming up with some kind of script to give caregivers if Dad is looking for Mom and thinks they murdered her. Have all caregivers use the same script. Also....have caregivers deploy open ended questions to Dad when he starts the repetitive loops. I had to type things out for the caregivers to say so they would have scripts on hand. Some examples to say if Dad thinks caregiver murdered wife: Dad to you or to caregiver: "Where is my wife? What did you do to her? I want my wife?" You or caregiver: Your wife is in heaven. You were married for 40 years. You had a great marriage and your wife is wonderful. We are getting ready to cook dinner. Do you want chicken or fish? Do you want green beans or corn? I know it is very, very tough. |
Anonymous
|
PP here.
We also call the caregiver Mom's "friend." Caregiver comes over. "I'm your friend Susan". If having the caregiver is causing your Dad stress have them interact less with them. Those that worked in dementia lock down units will know this stuff. We had a lot of caregivers that tried to "smother" Mom and get in her space. Mom did a lot better when we told the caregivers to back off. |
Anonymous
|
I'm the PP. It is okay to let phone calls to roll into voice mail.
You need to take care of yourself first. IF Dad is in mid stage you are in for a long run. We found that virtually every caregiver that we hired said they were trained in alzheimers but we ended up having to do a lot of training ourselves. What helped-- 1. Having caregivers back off a bit from Mom...give her a lot of space, not smother her, the caregivers would escalate the anxiety by being there and smothering 2. Exercise 3. Scheduled life routine 4. Healthy Diet 5. Typing up scripts for caregivers to say if he is looking for his wife or thinks caregiver murdered his wife. Try out the scripts yourself when you are in face to face visit then deploy them to caregivers to use. 6. Hire those that have worked in lock down units. They will be trained in being understated, unobtrusive and will have no problem with redirection. 8. Buy some books on alzheimers/dementia have them sitting around the house that the caregivers can pick up and read. Flag the chapters on redirection for the caregivers to look at. Big picture, let the calls roll into voice mail. Do not feel guilty about it. You have to take care of yourself first....your family.....your job. Dad is being looked after. |
Anonymous
|
OP, I sympathize. I wasn't the person who got the majority of the calls - my brother who was local did and even though he was a total saint and really valued his time with our dad, he used to get so crazy frustrated about the nonstop calls.
I used to call every night and sometimes during the day, just to give him someone else to talk to. Even that felt like a burden. I gotta tell you, though, after he lost the ability to call on his own (a sudden medical issue that accelerated his mental/physical decline) I missed it more than I would have believed. It was comforting to have a parent to call every night while I got my own kids ready for bed, even if my parent wasn't really able to parent anymore. One suggestion OP on the caregivers - we told our dad that he was helping to train the various aides we arranged. He bought into the explanation enough and eventually he just became comfortable with them and perhaps on some level knew he needed the help. |
Anonymous
Hi OP, This is a rough disease. Does your Dad do exercise? We found that really helped with Mom over the years. We had caregivers taking her out for walks every day unless it rained. Mom was always a walker pre alzheimers. The walks kind of wore her out a bit. Does Dad have other activities? Raking leaves etc? Does he do chores? Hitting golf balls? If you can keep him on a schedule with activities/chores that will help. I am not in the DC area but there are some free day programs where the caregiver can take Dad to the free day program of activities and lunch. Diet is important too. We've found eliminating sugar and and processed foods and eating lower carbish and plenty of fats helps her cognition. We find caregivers that have actually worked on a lock down dementia unit do better but are hard to find. The caregivers should be able to function on their own without calling you. It is okay to tell the caregiver that he can be in one room and they can be in another. We've had problems with caregivers "hovering" over Mom and that increased her anxiety. You can get a nanny cam for caregiver if they are in another room. The alz.org website has some non drug anxiety reducing techniques the caregivers can use that we've found helpful in the past. I printed it out for our caregivers. Dad died about 1-1/2 years ago but Mom still looks for him. dementia patient "Where is George? Where is my husband? Where is George? ....endless cycle of repetitive questions caregiver "George is in on a business trip. He is a very good husband. You have been married a long time. What do you want for lunch? Do you want chicken or do you want a hamburger? dementia patient again "Where is George?" I want my husband." caregiver "George is on a business trip. We are making lunch now. Do you want chicken or hamburger? Consider coming up with some kind of script to give caregivers if Dad is looking for Mom and thinks they murdered her. Have all caregivers use the same script. Also....have caregivers deploy open ended questions to Dad when he starts the repetitive loops. I had to type things out for the caregivers to say so they would have scripts on hand. Some examples to say if Dad thinks caregiver murdered wife: Dad to you or to caregiver: "Where is my wife? What did you do to her? I want my wife?" You or caregiver: Your wife is in heaven. You were married for 40 years. You had a great marriage and your wife is wonderful. We are getting ready to cook dinner. Do you want chicken or fish? Do you want green beans or corn? I know it is very, very tough. |