When help isn’t help

Paris20

I didn’t know how to construct a title for this problem but it is related to another post about people who may mean well but make things worse with their words, or their efforts to be helpful. Specifically, my husband’s AD symptoms are worsening in many ways. His anger, incontinence, balance, gait, appetite, sleepiness, etc. have deteriorated. During a recent appointment with the neurologist we decided to try a few new approaches, temporarily helpful perhaps, despite our knowing the ultimate outcome of all our attempts.

My daughters, who live in other states (one is on the opposite coast), want to do something, anything to deal with their father’s terrible illness. They’ve both been very close to him, from early childhood through adulthood. They’ve told me they feel as if they’ve already lost the Dad they knew. They want to help me but their offers are nothing I need or want. They want to add more technology to the care regimen…alarms, electronic gadgets, gizmos, cameras, car starter blockers, and more. My husband is never alone. His aide and I are either both with him or we take turns staying with him. At night there’s an alarm connected to the aide’s room. It goes off whenever our bedroom door opens. I have the only key to locks high up on outside doors. His old car keys are hidden well away. Mine are out of his reach. I think I’ve done enough. 

I don’t want to insult my children but when I tell them that the problems I’m facing now can no longer be fixed with technology, they become disgusted with me, as if I’m neglecting DH by not taking their advice. I’d welcome any ideas on how to deal with this latest stressor.

rockfarmerswife

Paris20 - it seems that your daughters are trying to feel in control of a chaotic situation (in their eyes, that is).  It sounds like you are providing a safe environment for your LO; perhaps your daughters could come and stay to give you a respite?  Then they would be able to be assured that you are doing what is best for both of you (LO and yourself).  If they don't take advantage of being part of the solution in the moment, in the environment, I wouldn't beat yourself up!

DrinaJGB

It seems to be the easiest thing in the world for the ones not involved in the caregiving to pass the harshest judgement upon the one who is. I've been there myself and it really sucks.SO sorry you are having to deal with that on top of everything else you are handling.

Ed1937

Paris, I think sometimes you just have to tell people exactly what you'd like. Maybe fix a few meals, stay with him so you can get away for a day or two. It sounds as if they really want to help, but not sure how to do it.

LadyTexan

I see myself on both sides of this situation.

My Mom has dementia. My Dad is her caretaker. My Dad does not embrace technology. I have saved myself so much time and energy using online banking, I want him to do the same. I use Google maps on my phone to get me where I am going. I want him to do the same. I order groceries on-line. I want him to do the same. He is not interested. Alas, he keeps writing checks by hand and taking them to the post office. He waits in line at the bank. It is his choice.

My sister wants to send me to a day spa so I can de-stress. A lovely thought but I'd be driving an hour each way, for a luxurious treatment, while I am paying a caregiver to watch over DH. Its not my idea of relaxing. What I really need is someone to watch DH for 2 hours so I can simply leave the house. OR run over to the our parent's house to show my Mom AGAIN how to use the remote OR fill Mom's med box. My Dad is so overwhelmed by caregiving chores.

Kudos to my sister. She helps me a lot. Her heart is in the right place. What I really need is for her to participate in monitoring and assisting with my parent's situation. She has been hands off with their care and assistance.

I can try to redirect her efforts, but it seems to hurt her feelings.

Crushed

IMHO your daughters may be  thinking about YOUR  welfare

"My husband is never alone. His aide and I are either both with him or we take turns staying with him"

I live alone and my daughters have every technology for  my welfare.  What happens if YOU fall and the aide is not there? 

You are an overworked caretaker.They may be afraid that you are ignoring your own welfare   in a heroic "I can do it all" caretaker mode.

   I have the only key to locks high up on outside doors

 This is a very serious  safety hazard which we solve with technology

  

Crushed

LadyTexan wrote:

 What I really need is for her to participate in monitoring and assisting with my parent's situation. She has been hands off with their care and assistance.

I can try to redirect her efforts, but it seems to hurt her feelings.

I was struck by the "my parents" line . 
Not OUR parents?
Do you discuss what to do about the parents or do your TELL her what to do.
  
You want to tell your mother what to do , tell your father what to do and you want to tell your sister what to do.  That's a LOT when you have a sick husband .    My father was a TERRIBLE caretaker for my mother when she had vascular dementia.  I have THREE sisters who ALL thought they were in charge of our parent's care. But I was the only one who lived close enough to do anything in an emergency.  

You are overworked. that is clear. You are beating your head against a wall with your parents and your sister is trying to get you to stop bashing your head and you want her to watch your husband while you bash  it harder?   that's a tough sell

Invite her over for cookies or margaritas and see if you can make a plan by discussion
 Just one mans advice who has been in your shoes

Battlebuddy

  My son was just here for a week and he helped a lot with various technology projects. He mounted the TV on the wall. ( DH was messing with the TV) Now it moves so I get a good picture wherever I sit. He installed a YI camera ( roughly 25 bucks Amazon) in the bedroom. I now can see my husband on it in the bed. I can go for a walk around the block or pick up food at end of street, and keep an eye on husband at same time. 

   In my opinion you might not know what you need until you start using it. Let’s face it the younger generation is very fluent in technology and it’s something they can do very well. I would  let them set something up and feel good about helping, and while they are there use their presence to take a break.

LadyTexan

Crushed wrote:

You are beating your head against a wall with your parents and your sister is trying to get you to stop bashing your head and you want her to watch your husband while you bash it harder?   that's a tough sell

Invite her over for cookies or margaritas and see if you can make a plan by discussion. Just one mans advice who has been in your shoes

LadyTexan Response:

I hadn't thought of it like that. Thank you.

Cynbar

Just a couple thoughts here. Paris, it sounds like your daughters are loving and want to be helpful to both you and your husband. They want to contribute, and their comfort zone is technology. I think it probably comes from a place of love, not criticism. Would it be so bad to accept at least a couple of their suggestions? You don't need to actually use them if they are not useful to you. One way to look at it is that you'd be accepting their ideas for their sakes, so they can feel part of the team. Some posters here have no involvement from their children, which puts your concerns in a new perspective. 

Lady Texan, you and I both know how exhausting it is to care for a person with dementia. It sounds to me like your dad may need to get out of the house, have contact with the outside world. He also probably finds comfort in longtime routines. I wouldn't recommend you try so hard to stop that, I'll bet it's important to him. If your mom can't be left alone, maybe try to arrange someone to stay while he does his errands. Everyone's journey is different and his doesn't seem to include online banking or grocery delivery--- my journey depends on both, by the way!  I'm not trying to be critical, just helping with your stress level to let some things go.

harshedbuzz

Paris-

This is such a sad and frustrating situation all around. I the daughter in my situation, but I am Team You in believing that the human element of care is the most important. Technology is only so good as it supports you in that task; it certainly can't replace you or your in-person caregiver.

That said, your daughter's may be feeling hopelessly impotent around being able to help their dad or unable to offer you anything meaningful beyond a sympathetic ear- and they're failing at that. Have they been able to visit? Is there an electronic portal for patient information you could make available so they could read the doctor's notes from each visit?

There are some terrific electronic options out there, but they may not be applicable. My friend got a lot of use from a bedside motion detector that alerted her phone so she could proactively attend to her mom if she got up or fell out of bed, but my dad was never exit-seeking, so such a device would be pointless for my family. 

One thought is that, perhaps, your daughters aren't the ideal support for you. Reading between the lines it sounds like you share a very valid complaint, they respond with a valid option you wouldn't consider, you dismiss it with with "yes, but..." which feels dismissive and tiresome. My mom is not at all tech savvy; if I could get her to 1) understand the difference between email, messenger, and texting and 2) stop signing posts on Facebook like they're personal notes I would consider my work here done. I didn't push tech often, but sometimes I'd spend considerable time looking for solutions and strategies to overcome some of dad's difficulties (like an easy to use TV remote or a Teepa Snow bath-time routine) and she would blow me off which felt disrespectful.

One thing I did to preserve my relationship with my stressed-out mother was to line her up with a local IRL support group. There, people her age who were caregiving, told her the same things I told her only she'd listen to and implement the very suggestions I'd given her a week prior. The other thing was to line her up with a talk therapist to give her a safe place to vent about things- including me- so she would be heard and supported.

Perhaps boundaries would be useful. Sometimes when I would vent to my DH about my parents it was useful to start with "I just need to get this off my chest. I need you to listen, not pile on or tell me I'm doing it wrong". Is this something you'd be comfortable saying or would it be easier to keep conversations on other topics?

HB

harshedbuzz

LadyTexan wrote:

My Mom has dementia. My Dad is her caretaker. My Dad does not embrace technology. I have saved myself so much time and energy using online banking, I want him to do the same. I use Google maps on my phone to get me where I am going. I want him to do the same. I order groceries on-line. I want him to do the same. He is not interested. Alas, he keeps writing checks by hand and taking them to the post office. He waits in line at the bank. It is his choice.

My mother is old school like your dad. Mom's a high functioning ADHDer and I learned long ago never to mess with the strategies she's developed over the years to overcome her executive function glitches. If she wants to walk to Talbots to pay her charge in person, so be it. I think she just wants to see what's new. If she needs to drive to her old house to find her way somewhere- even if it's in the other direction- I pretend not to notice. 

It works for her. And she understands it.

Right after dad died, my niece (also ADHD) stayed with her and converted everything to online- bank, credit, investments- and turned off paper. This was made worse by mom losing her handbag 4 days before he died and the two of us changing account numbers and cancelling bank cards- niece set things up using old numbers. It was a nightmare undoing it all. That said, when I inserted myself into her financials and had the bank send paper statements. I discovered 4 separate internet security subscriptions with auto-renew dad must have bought in the early middle stages of the disease. That was a quick $1200 a year. 

Paris20

In response to several comments, I want to thank all of you who took the time to reply. As far as technology goes, I am not averse to it. I use my computer to order groceries every week, I buy everything online, Zoom or FaceTime with friends and family, use telemedicine and patient portals with our doctors, and do my banking and bill paying online or through automatic withdrawals. We use that bedroom door alarm that I described in the original post. As for those locks, it was my younger daughter who had them installed when I wasn’t home. I do not use them for safety reasons. I don’t want to be locked in, but I suppose there could be a daytime emergency when it might be useful to be sure DH stays inside.

My daughters do want to help but live too far away to be here often. They lead busy lives and have their own children who need their time and attention. I understand. I am involved with long-distance care of my 99 year old mother who is suffering from anxiety and depression but cannot be treated because of her serious physical ailments. I know how difficult that can be for any adult children. Mom calls me at least three times a day. She has a live-in aide but I do feel guilty not visiting my mother frequently. I make phone calls to doctors and repair people but my brother has to handle the rest.

I think it’s the frustration of distance that leads my children to recommend solutions to problems I don’t have, despite my texting details about DH’s decline. I can’t talk to anyone on the phone about him because of his anasognosia and constant shadowing. One of my daughters installed cameras all over the house when I was in the hospital a couple of years ago. My husband was sharper then and noticed the small cameras immediately. He quickly tore them out. I wasn’t sorry to see those cameras go. It’s these versions of helpfulness that I can live without. I don’t want to seem ungrateful. I just want to be honest about the realities of daily life around here.