Caregiving from afar

lilacgirl · February 17

Hi there, I am new to this group and new to the dementia journey with my mom. My father passed away right before Christmas, and now she is alone in their home. I live 2.5 hours away, and my only other sibling is 5 hours away from her.

Mom has been showing signs of dementia for about 2 years, but has really declined over the past 6 months or so. But she and my dad managed to care for each other, so we did not worry too much about her. Now that she is alone, we are struggling to know how to navigate this whole thing. The signs of dementia that we are seeing include all the classics: repeating stories and questions over and over, trouble coming up with the right words for things (even confusing opposite words — saying it's really "hot" out when it's actually freezing), forgetting names of people she knows very well, getting extremely confused about schedules/calendars. She has gotten lost driving to familiar places, but fortunately she has not driven in quite awhile. Also, my brother and I are POA and are handling all of her finances.

Besides these things, however, she is handling the rest of her IADLs well — her home is very neat and clean, she keeps up with laundry, hygiene is good, she manages her meds well, is eating well (although won't cook much of anything anymore). So she sees no need to have any outside help (and gets very upset when we suggest it.) As a result, I'm traveling there 2-3 times a month to take her grocery shopping and to any appointments she might have. My brother has a lot farther to come, so he comes less frequently. I also speak with her on the phone daily. It's a lot. I'm completely stressed and feel burnt out already.

She has an appointment with her PCP next week and we are planning to call his office this week to share our concerns, hoping this will be the start of moving toward a diagnosis—but she will be VERY upset about that — she already has told me I'm not allowed to go into the appointment with her because she is afraid of what I will say.

I would like to get her to move near me, but she has been told many times that she should not make any major changes during the first year after losing her husband. Also, I feel like the reason she's still functioning as well as she is has to do with her being in her familiar surroundings.

I guess I am wondering how people would suggest handling this situation — ie., do we just keep the status quo as long as possible? Force her to accept outside help? Have an assisted living/memory care option at the ready in my town? (Note: I have come to terms with my own selfishness and accept that I would not do well having her move into my home, although I'm sure that would be her preference. She is an extremely anxious person by nature, and brings out my own anxiety.)

Sorry for the length of this; thanks if you got this far!

H1235 · February 17

Welcome. When we moved my mil to assisted living we discovered things in her apartment that really showed she was struggling more than anyone realized. I think the same was true with my mom. When mom was in Al I had taken her to the dentist every 6 months and she would get a new toothbrush. I assumed she was swapping it out each time with her old one. I eventually discovered she hadn’t changed her toothbrush in about 2 years. My mil had no kitchen towels in her entire apartment. 🤷‍♀️ There are just so many little things that she might be struggling with that you probably have no idea about. If you have looked around at all on this site you have probably already seen it, but I will attach the dbat staging tool. As far as the pcp. I opened a patient portal for mom and communicated with her doctor that way. I have also written a note to the doctor and brought it in before the appointment. I liked being able to think through what I wanted to say and how to say it. Can you make some kind of excuse to get into to room with her? “I’ve never met your doctor can I come in with you? Or I’m concerned about your blood pressure ( or whatever she might bye) and I’d like to ask some questions.” My mom was not very happy about me going into the appointment with her. I just did. I think I told her I wouldn’t bring anything up (because I had already given the doctor the information). The pcp did a short set of questions that mom did fine on, but thankfully still referred her to a neurologist. It will probably take months to get into a neurologist. Make sur her doctor has a copy of the DPOA. It was recommended to me to try to keep her care one step ahead of where she is at. She may be doing fine with the stove today, but if she progresses just a bit more could she burn the house down. You want to be proactive. I realize her familiar surroundings may be helping some, but doing things that are confusing or overwhelming for her may be making things worse. You might find it’s a bit of a wash. You are probably never going to get her to agree to a move to assisted living. Anosognosia is common. I will add a link. You need to do what you think is best for her regardless of how angry she gets. Safety should take priority. Sometimes there is just no way around the anger. Medication might help some as you move farther along with things. An assisted living can have a waiting list. I would find a place near you and get her on a waiting list as soon as possible. As far as her living with you vs Al, no judgement at all! I hope something here was helpful.

DBAT.pdf

Anosognosia and Dementia - AgingCare.com.pdf

SDianeL · February 17

welcome. What H1235 said plus a few things to consider: is she really managing her meds? How do you know she takes them or doesn’t take them twice? She is vulnerable to scammers. Check her phone and internet, bank account and credit cards. When my husband was being evaluated for respite care the nurse asked him what he would in case a fire broke out in our house. His answer was he would try to put out the fire. Not call 911, not get out. The nurse said under no circumstances should he be left alone. I never did after that. There is more to dementia than memory loss. There is loss of executive function. You mentioned she hasn’t driven in awhile? Does she have a car? If so I would remove it. Another thing to consider is that PWD wander off. That can happen at any time in progression. Make sure you have a way to track her. Don’t assume she will take her purse. Things that will help: Read the book “The 36 Hour Day” and search online for dementia caregiving videos by Tam Cummings or Teepa Snow. They are very helpful. Come here often for info and support.

April23 · February 17

Have you ever shown up unannounced? Many PWD especially in the early stages can kind of hold it together when they know they have to. ITA that there are probably things going on that you don’t realize. My dad struggling with his calendar was one of the first signs I had that things were really amiss and it progressed quickly from there but every PWD is different. You’ve been given great advice already. Educate yourself on the disease and try to stay one step ahead of it. As it progresses, managing from afar will become difficult to impossible so you will definitely need a plan in place.

pamu · February 18

It sounds like she's at the point where you will need to increase your visits and look for clues regarding her progression. My mom (87YO) seemed to be managing ok until we realized she wasn't. Her apartment and appearance were very tidy and she said she was able to manage her medications from the weekly dispenser we set up each week. We realized that she was throwing things away…like her underwear and random needed stuff. Toward the end of her living on her own, it could be up to 2-3 trash bags per day. We would discuss her meds every night (on the phone) and she swore that she took her meds… I'd check the dispenser a couple times a week and it would be messed up and she would just say she didn't know what happened. She was able to "showtime" for the doctors and her home care aides for a very long time. She progressed really fast after a fall in July. She then went to AL and stayed only 18 days until she eloped from the home and was hospitalized. From there she was moved to MC, where she is now. Some people will tell us that mom is better cognitively than the other residents there but after a short time she shows her true self and her dementia takes over. Maybe an approach to get her to accept you going to her doctor appointments is to tell her that now that your dad has passed she needs someone on her team to help her manage her health and home. So instead of taking away her independence you are helping her maintain it (for a little while anyway). Thankfully my mom didn't feel threatened by us going to her appointments. I think she felt like she was taking control and making decisions for herself at the time. Speaking of doctor appointments, I don't feel like my mom's PCP or even her neurologist helped at all (after her diagnosis), her geriatric psychiatrist has been the most helpful managing her symptoms. Come back to this forum for info and support. It has been a life saver for me. Wishing you the best.

I edited my initial comment because I reread your post and saw that you already have DPOA.

Btx4171 · February 20

I could have written this. My dad died 3 years ago. My mom’s issues we attributed to stress, then they just progressed and now she is in memory care (for past 5 months).

I wrote a letter to the primary MD. They cant discuss medical issues untill you get her to add you to her HIPPA form at MD office. So write the letter, report what you have seen, assert yourself when she says you cant see MD with her.

Glad that the finances are handled. My mom didnt distinguish night and day.. she’d get up at 4 am and go to the store/ doctor / bank and not understand why they werent open. She would go to appointments on the wrong day, wrong time, wrong doctor. Then she would call me 6-8 times a day, including 3 am calls, asking why I hadnt come for lunch.

You cant help her get back on track. It is going to keep unravelling.

Go look at assisted living and memory care places in your area and get her on the waiting lists. It is about safety (hers) and piece of mind (yours).

psg712 · February 21

You are not selfish. You are realistic about your own capacity and her inevitable decline. Agree that often our LO is struggling more than we think they are. If possible, go spend a week with her at her home and just observe.

My mom wasn't happy about me moving her 400 miles to live in an AL near me. It only took a few weeks though for me to see how badly she had needed it. That was 4 years ago. She's in memory care now and doesn't appear to remember where she lived most of her life. But she is safe and mostly content. I am relieved and grateful.

Caregiving from afar

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