Guilt, Second-Guessing, as Long Distance (not primary) Caregiver

lisatinaustin

Only my second post here. I'm NOT the primary caregiver for my Dad as I live 3 hours away. My brother and SIL live 10 minutes from Dad's facility. 

Anyway, Dad was moved to MC about two weeks ago, after being in AL in the same facility for about 4 days (was going into other's rooms and using their restroom, eating their food, etc.). So, he's been away from his home of 42 years for only about 2.5 weeks. He's not officially diagnosed with Alz, just dementia, but if I were to assume he has Alz, he's between Stages 5-6. 

He uses his "Grandpad tablet" to try to call my brother and I many, many times a day, leaving messages begging us to help him, nearly crying, to give him money, that his money was stolen by staff, or that we are going to steal his money, that he lives in a prison, that he has no reason to live, that the place is terrible, that we've ostracized him, that he's all alone ... and on and on. I manage to talk to him on the phone or video call once a day now as I just can't listen to him go on and on, usually with bouts of crying or anger, or with his TV volume turned up so loud we cannot understand each other anyway. I try to distract, talk about his grandkids, etc. It doesn't work most of the time, so I just listen and tell him "I'm sorry". I think it helps for him to feel he still has the ability to contact one of us, so I can't bear to tell staff to take the Grandpad away ... plus it is difficult to try to reach staff to schedule a time to talk to him with their assistance.

My brother (who lives 10 minutes away), understandably, also doesn't visit or talk on the phone to him every day, especially recently, so my dad thinks he's abandoned him. When my brother visited him a few days ago, Dad accused him of all sorts of things, so I think my brother just wants to wait a bit to try to visit again. My brother IS doing all sorts of things to help out with Dad including coordinating his medical care, he's the POA and handles his bills and his home, communicates with the staff, etc. And actually , my brother did go up today to visit, but Dad was asleep so he didn't wake him up.

I probably try to "control" too much from a distance, too. My brother and I are Dad's only family now, so I just want to feel like I'm contributing to his care. But I feel very much out of control and out of the loop. My brother tries his best to communicate (even weekly email updates) but I feel like there is very little communication from the MC facility to me (and maybe it should be that way ... just one family contact). But then I'm the one talking to Dad more often than my brother does.

I know I "shouldn't" feel guilty for not having Dad live with me, or for living 3 hours away, for not "doing enough" as the non-primary caregiver, for not moving into Dad's house to care for him, or even that Dad has to be in MC and hates it. Dad would be VERY difficult to live with even before dementia. But ... I DO feel guilt and can't shake it. It is very depressing hearing my dad like this. I so want to go to him and hug him and tell him it will be okay. I also keep second-guessing if this MC facility was best or was it most convenient because it was attached to the AL we initially selected. Perhaps all of this behavior is normal and it is just a matter of time ... or perhaps the facility does NOT do a good job of trying to get him acclimated. How can I tell as a long distance caregiver if the MC facility staff is providing adequate care, or not? Not sure since I'm 3 hours away. Or maybe I just need to let go and trust my brother.

I don't know that I'm as much asking for any advice, just venting and needing encouragement. Are there any support groups for non-primary long-distance caregivers? 

dayn2nite2

The facility can only do 1 point of contact, which is your brother.  He has moved your father into an appropriate level of care, and he is nearby.  Let your need to know what’s happening every day go.  If you think it’s hard hearing him on the phone, imagine hearing your father in person.  In this case, no news is good news.

He will adjust.  It will take time.  Yes, to him this is terrible.  But he is SAFE.  That’s all that matters.  Him being happy about these changes isn’t going to happen.

Jo C.

This is hard and I am sorry. Perhaps you can make a visit in a few weeks or so.  And if your father is having such a dreadful time of it, perhaps your brother who has the POA can ask for an early multidisciplinary team meeting which must be done within a certain time anyway. In this, the DON, the supervising RN on your father's unit, the social worker, the activities director, PT, and dietary should all be there.

They can address the issues and put together a plan of care essential to his needs at this time and then change them as needs change. Perhaps if there was the same staff member caring for him on each shift for the the next few weeks so he did not have to get used to so many new faces; perhaps if they were to pamper him for a week or two; if he had treats he likes, if someone took him to activities and meals; and perhaps to have him seated at a dining table with others who are functioning as he is; it is awful to be sat at a table with very compromised people when one is fairly high functioning.

There are other things you may think of from afar which may be helpful

I wish you the very best let us know how it is going, we care.

J.

Emily 123

Two weeks is too short of a time to be making any judgements.  The staff will be trying to let your dad settle in. The move into a facility will be disorienting and it's not unusual to see the PWD struggle with the new environment-it's a lot for them to handle without a working memory, but time and repetition will help.  Once they're situated and in a routine it will be easier, but that can take up to 3-6 months. Continue to be calm and divert when you can in your conversations. 

 It is normal to second guess the decisions made, especially when the transition is a tough one.  It sounds like your brother is doing a great job. Doing 'the move' is so stressful in person.  You should send him a card telling him he's awesome.  I'd guess that the plan was for eventual MC placement anyway, so he's very likely assessed the facility for that too. 

If you want to go give your dad a hug then go ahead--you can see the MC and hopefully be reassured.  You might want to wait, however, until he's settled in more.  It's ok to only take 1 call a day.  Remember, right now nothing looks familiar & I bet your dad  thinks he's talking to you for the first time each time. 

star26

I like how you are handling your Dad's heartbreaking calls and the fact that you are continuing to talk to him every day. I wonder if adding some reassurances and fibs to your responses might help? For instance, whatever he is asking for (send him money, move him home, etc.) say that you will get to work on that and make it happen. "I'm going to report that to the manager as soon as we hang up. I'll tell them to..." "I'll contact the bank and see how I can get some money to you." "I'm going to look for a better place for you to live." Fibs can include delay tactics and whatever you think would give him a little solace in the moment. "It's only temporary." "Your doctor wants you to get stronger before he signs you out to go home. But it shouldn't be too much longer." You get the idea. Even though my Dad was not getting what he wanted immediately, when I would give a reassurance and fib that I was working on it and it would happen, he did calm down a bit but usually not enough to discuss anything else. And then it eventually lessened and stopped being the main topic of conversation. His poor memory and sense of time should make it easy for you to repeat the same reassurances once you find what works. 

I'm wondering if the MC staff would talk to you if your brother authorized it, or if maybe your Mom already signed a HIPAA authorization that included you in the past? They would still likely call him as the primary contact but if you were able to check in with the staff when you are particularly concerned or just want to see how he is doing, I think that would be good for everyone. Maybe your brother would like that idea and be happy to defer some of that to you?  I would ask the MC staff how and what your Dad is doing when he's not on the Grandpad with you. Sometimes the PWD is in better spirits when not talking with family and this could make you feel a little better. Their response could also help you gauge what you think of their MC facility and how they are helping him acclimate. I don't like the idea of "just trusting" unless you feel your brother really is on top of it, in which case he should be able to share reassuring information with you. 

It's really a heartbreaking situation but from what I read here, it usually does get better.

abc123

You've gotten some good feed back already. I agree 100% with what dayn2nite2 said. I know it's hard on you to be far away, but it is what it is. You can't move just to be closer. I really do understand being far away from your dad is difficult but try to relax and trust in the people at the facility and your brother. It might help you to remind yourself that your dad has brain damage now, his brain does not function properly any more. You can no longer believe everything he tells you. While it is true to him, it usually is not a reality. There is nothing easy or pleasant about this disease. I'm sorry you have to deal with this but I am glad you found us. Read as much as possible. There is sooooo much to learn. It's good to know your dad is safe and clean and well fed. Hang in there.

Cynbar

This sounds like pretty common behavior for people who have just moved into MC. Two weeks probably seems like an eternity to you, but it's really not long at all. His mind isn't working right so he can't process the reasons for the move, all he can do is react to his feelings of change. It seems from posts here that almost everyone does adjust, you just have to give it more time. Maybe you can visit soon, to see the facility for yourself? That might help you feel better about things. But I think it's perfectly normal for the facility to have little contact with you, and I wouldn't expect that to change. It's common for medical professionals to have one contact person, the POA. Speaking to others in the family with updates is time consuming, but it also gets confusing if different family members have different opinions and requests. This isn't a democracy , patients appoint one contact person and that is the one in charge. I imagine you feel that you are only one extra person for them to talk to, but imagine if all their patients had several family members who want to have input and updates. It sounds from your description that your brother is doing a good job. Hard as it is, try to relax and let him handle things.

lisatinaustin

Thank you all. This was all a great reminder and good advice ... the encouragement I needed. I'm not in control, but Dad is safe and after reading through the "Dad incidents log" I kept over the past six months ... it is much better handling Dad's anxiety, rather than receiving the growing calls from neighbors, friends, police, EMS, even Dad himself, about Dad getting lost, falling, wondering where we are, etc. He would be JUST as anxious in his own home because he was to the point where he didn't always recognize that he was in his home or would wonder why we locked him in his house (we didn't).

@dayn2nite2, @Emily 123, @cynbar, @abc123 ... Yes, I need to let go and stop trying to feel like I need to be involved everything. Part of it is guilt that my brother and SIL have to deal with the vast majority of his care. But my brother is the POA (I'm just the backup in case he can't) and also he just retired, so he does have more time than I do. I do send my brother many texts of appreciation and gratitude, but yes, a card would be a nice touch, too. I'm also trying to help as much as he allows me to with Dad's estate and sale of his house. Again, it is difficult since he is the POA. 

@Emily 123 .. Actually my brother was more in denial that Dad needed to be in MC, so the selection of the facility was based on the quality of the AL as my brother's FIL had lived there and had a positive experience. But we did choose it over another facility because it did have MC if Dad needed it. We were both hoping he would stay in AL much longer than a few days. There was a much smaller MC-only home also near my brother that I think might have been a better choice, but we couldn't have known that at the time we moved Dad. 

And yes, it DOES make perfect sense that the facility doesn't have time to communicate with each and every family member. Thankfully, the MC director DOES reply to my emails when I have questions, so I'm thankful for that. I'm listed as HIPAA contact as well, so I can ask medical questions. 

Yesterday the director responded to my email that staff has said Dad has become calmer and "easier" over the past few days and suggested that it is when he is trying to contact us that triggers his sadness/anger. He suggested that we disable the calling function of the tablet for awhile and just send notes to him for a few weeks until he gets used to it. What do you guys think? I just feel like having the ability to call people is the ONE thing Dad feels like he still has as a connection to the "outside world". However, last night after 31 video/voice call attempts throughout the day from him, I did temporarily disable his calling ability, and may leave it off for awhile until I decide to call him.  

@Jo C. : Yes, I think I will inquire about the early multidisciplinary team meeting. It is probably a bit early now that I'm reading these responses, but I feel like some of your suggestions would be beneficial earlier, rather than later.

I do plan to go visit Dad, but felt that we should wait a few weeks for him to adjust. I'm not sure how long to wait, but we are thinking about going in a few weeks, so about 6 weeks after he has been there. 

The fibbing part is still new to me and I'm a terrible liar. I know it may be the most compassionate thing to do, I just have difficulty executing.

River54

The people at my mom's senior living facility said it takes a good couple of weeks at least for them to get acclimated and used to the schedule. My mom was very confused the first several days as to where she even was (though she was happy to be there). It did end up taking 2-3 weeks before it started becoming her new normal and she settled down. Maybe you or your brother could talk with someone at his MC facility to express that he doesn't seem to be settling it at all and if they have some suggestions that could help. I'm sure they deal with this all the time.

King Boo

Your brother chose the facility.  Your brother must deal with the facility.  Do NOT second guess his choice unless he raises concerns.   Or there is a clear and present danger brought to your attention.

If the possibility of the need for a new facility comes up, you offer to do the research and video calls 'to narrow down some options.'.   If you verbalize any doubt about his choice, your need for control and thoroughness will sabotage your relationship with your brother.

I did not enjoy Monday morning quarterbacking from my siblings.  Very destructive.

Ditch the phone/granpad.  It is a portal to stress and anxiety for your Dad (and everyone else in the family).  Out of sight, out of mind.  Never put a phone in my LO's room for this reason.

Citing your brother as retired and therefore having more time than you is not going to be productive in the long run.  It's a loss for him, he deserves a retirement.

It doesn't sound like you are doing anything hands on that would help your brother.  Why not offer to take over paying medical bills and reconciling the EOB's for him?  You can do that from afar and it would help him with a huge time suck, since he is the 'go to' person for in person visits, ER visits, etc.

Also helpful - plan your visits in conjunction with your brother.  It gives him a week off of having to check in on him.  While I was glad my sibs would visit my LO, it was extremely annoying to find out they had been there without telling me, because surely I would not have gone the same/next day.  Then again, they thought"she has more time than me" because "I was just home with my kids".   Viewing things across the great divide of a different position is never productive.    Teaming and communication is important.

If you are critical of your brother, don't expect the weekly e mail to continue.  I stopped it because I got nothing but more 'input' about what I could do differently, criticism, etc.  Didn't need it.

From someone who has been in your brother's position.   There is a learning curve to this.  IGood luck.

Emily 123

The fibbing part is really hard, isn't it? 

Absolutely disable the tablet, as it seems to be a trigger. It's ok. 

Using notes for now sounds like a great idea--that's something tangible he can look at to substitute for his memory.  We made my mom a little book out of a spiral bound 3 x 5 cards and she liked that.

Perhaps when he's settled in you can reactivate the grandpad, but that will probably still result in a lot of calls to you, since his short term memory is shot.  A daily call in at the same time might be better.  Some folks here have used the Amazon Echo Show with success.

storycrafter

Don't hesitate to attend/visit online and in-person local Alz meetings. They can be wonderfully supportive and informative over time. If one meeting doesn't help, stay with it a bit to give it a chance. There may be others with very different situations, but all caregivers need support whether living nearby or far away; whether closely involved or not.

It can be worth sitting through listening to situations you may not identify with, because you glean bits of helpful information when you least expect it. Or, when you have a turn to speak and ask for support or information, or "just vent," the nuggets of wisdom, empathy, and information from those who have gone before is priceless; you may hear just what you need to get through another day with a lighter heart, or a stronger heart, because it helps to process thoughts and feelings with others who understand without needing explanation.

About guilt. Guilt is something all caregivers and support people experience. It comes with the territory. Knowing that it's normal, and reminding ourselves that we are only human, can help us gradually accept the discomfort, learn to give ourselves grace, learn to let go of the futile energy drain and turn it to more helpful thinking that supports ourselves and others. Talking about it with others in the same boat is a validation/affirmation that frees us from needless angst. We are all doing the best we can with what we've got; our efforts are valuable even though they can never be perfect.

Never discount or minimize the value of long distance moral support. I was the closest responsible caregiver for many years for my elderly father with Alzheimer's. I will be forever grateful for the patient listening ears of siblings who lived far away and could not be here to help in person. They acted as sounding boards when I needed to make decisions and as I coped with the immediate draining demands, business-wise and emotionally. A couple of them were able to give me the healing space needed to talk it out without receiving unsolicited advice, and without trying to "fix it." When I requested advice or suggestions, they were kind enough to let me deal with the final decisions that had to be made in the moment, and supported whatever I needed to do. It made a very difficult position with stressful decisions, more bearable and it provided strength and courage. These are very important intangibles that can occur over the phone or through emails/texts.

Another thing that was very helpful from afar... sometimes phone calls needed to be made and it was possible for others to take on that time consuming task for certain items. If you have a gift in some area, like accounting or math, or scheduling, or communication, offer your skills for use when the opportunity arises. I had one sibling who took over ordering groceries to be delivered to our loved one; or one who called around and set up a housecleaner; one of them handled the prescriptions ordered and delivered from the pharmacy; someone trouble-shot my dad's CPap machine issues - a time consuming project. 

That's more than enough from me, but I want you to know you have a lot of good company and great experience here. You're not alone and keep seeking answers to your questions until you find the help you need. Hang in there and keep a heart that's willing to learn. Blessings....

abc123

As long as he has a link to the outside world (the grand pad) he can not settle down.  You can not control this situation. You have got to let go. He has brain damage.

Cynbar

It actually sounds like your dad is doing pretty well. Many if not most new residents of MC have an adjustment period, their dementia has progressed enough so they can't process the reasons for the move or the safety issues at home. Two weeks is not a long time, and yet he's settling in when not triggered by the calls. You can trust the MC staff, sounds like they are giving you good advice and they have a lot of experience with adjustments. I know it goes against your instincts to take away the Grandpad, but I do think it will help your dad. And it's a good example of how your thinking has to change, the old rules of how you dealt with your dad no longer apply. It's a challenge we all have to go through. And I hope this progress lets you relax a little and not be as involved in every detail, too much involvement runs the risk of alienating your brother and the MC staff, no matter how good your intentions are.

windyshores

I have heard it takes months to get acclimated to memory care. And a move is very disorienting.

Perhaps visiting once a month will help you.  But many facilities don't want family to visit while the person is getting acclimated for the first weeks.

I would also try to trust your brother and to some extent the facility.