Supporting my mom who is going to Mayo Clinic

Posted by tiffdavidson @tiffdavidson, Apr 12, 2021

My mom will be seen at Mayo at the end of May. She lives in Indiana and I live in California. She does not have a diagnosis and was told to expect to be there for 7-10 days. She is depressed and not herself and I am trying to decide if I should go. Her husband will be with her and he is great but I feel like I should be there as well. Do I go? Do I go after a few days when they know more? I would love to hear from someone that has gone to Mayo without a diagnosis and there suggestion. Everything I have read and heard about Mayo brings me hope that they will figure out what is going on.

Interested in more discussions like this? Go to the Caregivers Support Group.

@rosemarya

My husband (pre Covid19) would have to wait in the waiting room during my tests. However, he was always with me during the consult, when the doctor discussed the results, diagnosis, treatments. I don't know what is allowed now with the current Covid19 restrictions. You can find it here: Guide Patient & Visitor Guide > Your guide to getting care at Mayo Clinic
https://www.mayoclinic.org/patient-visitor-guideFree Concierge Service

I know that it is difficult to think about a 7 - 10 day span of time, and some members have talked about this in the discussions that Colleen has already shared. I would encourage you to scroll thru the discussions and read those that apply to your mom's situation. There is comfort in knowing that one is not alone.

To offer you, your mom, and her husband some additional support, Mayo Clinic offers free concierge services dedicated to lightening your load and making your visit easier. I would encourage you to visit this link to learn how the trained concierge staff can make the trip a little less stressful for your mom. I think you will also benefit from learning of the resources available. There is also a Live Chat line available.
https://www.mayoclinic.org/patient-visitor-guide/minnesota/concierge-services
I'm out of time. I'll check in later.

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Thank you @rosemarya I will look into the concierge services. I have been reading the website and looking at everything, I am so thankful she is going to Mayo!

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@loribmt

@tiffdavidson Hi, I’m just catching up on what other mentors and community members have been saying about your question whether you should be with your mom at her appointments.

First, let me say how sorry I am to hear about her medical concerns and not knowing what’s going on. This has to be so stressful for all of you and frightening for her. Especially if she’s depressed. Let me assure you, she can’t possibly be in better hands than with the outstanding doctors and staff at the Mayo Clinic. It’s truly a place of hope!

I’m a recent patient of Mayo-Rochester and at this time 2 family members are allowed to accompany the patient to consultations and escort to and from the procedures and tests.
Most tests don’t allow for anyone to be in the room other than the patient because it’s not practical. But from my extensive experience there, each technician, nurse, nurse practitioner are caring and empathetic. They will do their utmost to care for your mom, help her relax and put her at ease while she undergoes her evaluations.

My personal opinion would be to not go at this time but wait for a diagnosis. Your mom will be on a busy schedule at Mayo. My own daughter lived only 1.5 hours from Rochester and we still asked her not to come until testing was over. Frankly, by the end of the day I was exhausted and the last thing I wanted to do was try to be sociable or engaged. My daughter was torn too as she felt she needed to be there. I assured her I could feel her love and support and that I’d need her more down the road when my treatments started. My husband was my caregiver and it was enough that he was there as my extra eyes, brainpower and moral support for the duration of the evaluation period.

Have you asked your mom and step dad if they’d like you to be there?

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Also is it likely she will have time gaps between appointments? Right now she has 3 scheduled, 2 on her first day, one in the morning and one in the afternoon. She booked a camping spot as they have a really nice trailer but its about 15 minutes a day. I feel like a hotel close to Mayo is a better option for going back and forth. Thank you Thank you to everyone providing information! You don't know how much I appreciate it.

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@tiffdavidson

Also is it likely she will have time gaps between appointments? Right now she has 3 scheduled, 2 on her first day, one in the morning and one in the afternoon. She booked a camping spot as they have a really nice trailer but its about 15 minutes a day. I feel like a hotel close to Mayo is a better option for going back and forth. Thank you Thank you to everyone providing information! You don't know how much I appreciate it.

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Your mom will be in amazing hands at Mayo. Truly, they set the bar very high for medical care and spoil their patients for treatment anywhere else.
I’m biased because I’ve been “Mayo-naised” more than once. LOL

The clinic is very easy to navigate. It looks large and intimidating when you drive up to it. But once inside, there is signage everywhere and volunteers in Blue Jackets helping with directions. Everyone is so friendly and attentive.

It’s really nice that your parents have a camper where they can stay. That would definitely save on hotel costs and be a familiar roost at night. Rochester is super easy to get around but parking can be a challenge near the clinic. So if they do stay in the camper, allow extra time if your mom has an appointment before 9 AM to find a parking spot and arrive to the clinic on time.

Your mom has only 3 appointments scheduled right now. But as she has tests run and meets with doctors they may schedule more appointments.
If she checks with the intake desks where her appointments will be, often there will be a cancellation and her appointments could be moved up and consolidated.

There are lovely lounge areas for resting, lots of bathrooms, and a cafeteria in the clinic and with restaurants and shops attached to the clinic. It’s also in the downtown area with lovely places to walk. Easy to kill time while waiting between appointments instead of driving back and forth to the camper.

However if they (you) have a hotel close to the clinic, most are linked by tunnel to the clinic (called the Subway). They would be able to park at the hotel and then just walk to the clinic and back between visits. That’s what my husband and I do. Super convenient. Or, there are hotels a little further away and most have a shuttle service.

You know your family best. If you feel it would be more advantageous for you to be with your mom at the appointments instead of your stepdad, that would be great. But at some point if your mom does need to be tended for some medical reasons, your stepdad will eventually have to step up to the plate unless you’re prepared to be with your mom during that time. So maybe the best option IS to be at Mayo with both of them. That way he can be part of the process and get information first hand as well.

If I can be of any further help, don’t hesitate to ask. My husband and I had to temporarily set up housekeeping in Rochester for 4+ months while I underwent a bone marrow transplant. The clinic and Rochester are like a second home. ☺️

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@tiffdavidson,
There is one thing that I would add as a way for you to support as she prepares for her appointment: help her to make a list of questions that she (and you) want addressed. My husband and I always walked into appointments with a list of questions and concerns, and at Mayo the doctor or the nurse always gave us unhurried time and ad they answered questions in a way that we could understand. I even had doctors make drawings and illustrations for me to understand.

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@loribmt

Your mom will be in amazing hands at Mayo. Truly, they set the bar very high for medical care and spoil their patients for treatment anywhere else.
I’m biased because I’ve been “Mayo-naised” more than once. LOL

The clinic is very easy to navigate. It looks large and intimidating when you drive up to it. But once inside, there is signage everywhere and volunteers in Blue Jackets helping with directions. Everyone is so friendly and attentive.

It’s really nice that your parents have a camper where they can stay. That would definitely save on hotel costs and be a familiar roost at night. Rochester is super easy to get around but parking can be a challenge near the clinic. So if they do stay in the camper, allow extra time if your mom has an appointment before 9 AM to find a parking spot and arrive to the clinic on time.

Your mom has only 3 appointments scheduled right now. But as she has tests run and meets with doctors they may schedule more appointments.
If she checks with the intake desks where her appointments will be, often there will be a cancellation and her appointments could be moved up and consolidated.

There are lovely lounge areas for resting, lots of bathrooms, and a cafeteria in the clinic and with restaurants and shops attached to the clinic. It’s also in the downtown area with lovely places to walk. Easy to kill time while waiting between appointments instead of driving back and forth to the camper.

However if they (you) have a hotel close to the clinic, most are linked by tunnel to the clinic (called the Subway). They would be able to park at the hotel and then just walk to the clinic and back between visits. That’s what my husband and I do. Super convenient. Or, there are hotels a little further away and most have a shuttle service.

You know your family best. If you feel it would be more advantageous for you to be with your mom at the appointments instead of your stepdad, that would be great. But at some point if your mom does need to be tended for some medical reasons, your stepdad will eventually have to step up to the plate unless you’re prepared to be with your mom during that time. So maybe the best option IS to be at Mayo with both of them. That way he can be part of the process and get information first hand as well.

If I can be of any further help, don’t hesitate to ask. My husband and I had to temporarily set up housekeeping in Rochester for 4+ months while I underwent a bone marrow transplant. The clinic and Rochester are like a second home. ☺️

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@loribmt Hotel suggestions. I would like to be within walking distance and be close to downtown, which it sounds like I would be at Mayo. I don't want to rent a car if I can manage without. Would love a pool so my mom can swim and a room with at least a microwave and fridge. I am going to talk to her today and tell her that I am going. Then we can decide the rest. I just want to say I adore my step-dad, he is the best and I know he can take care of her, sometimes she just needs to tell him what she wants. Thus starts my marriage advise to my mother! haha when did I grow up?

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@tiffdavidson

@loribmt Hotel suggestions. I would like to be within walking distance and be close to downtown, which it sounds like I would be at Mayo. I don't want to rent a car if I can manage without. Would love a pool so my mom can swim and a room with at least a microwave and fridge. I am going to talk to her today and tell her that I am going. Then we can decide the rest. I just want to say I adore my step-dad, he is the best and I know he can take care of her, sometimes she just needs to tell him what she wants. Thus starts my marriage advise to my mother! haha when did I grow up?

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@tiffdavidson LOL You sound like my daughter who is 37. “Adulting is sooo haaaard!!” It’s always an eye opener when rolls reverse, isn’t it?

Ok I can feel it in your conversation that you are much happier now with a decision made! Awesome.

You won’t need a car. There are a plethora of hotels, restaurants, stores, within walking distance to the clinic. Many are connected via the Subway and skywalk system. Wanting a pool at the hotel is a little more of a challenge but doable.
Here are a couple I found right downtown with pools.
Hilton Doubletree Inn
Hilton Garden Inn
Kahler Inn & Suites

Because the city is impacted by the Clinic, many of the hotels are geared up for long term stays and have suites with full kitchens or kitchenettes. When we stayed in Rochester for 4+ months we were at the Marriott Residence Inn. We still return there for our 1-3 day stays for my checkups. There are some two bedroom, two bathroom units as well.

As mentioned before, the Concierge services at Mayo are a great source for information.
Also, a google map search of the area will give you a great overview.

Here’s a map of the campus! So you can see how close everything is!
https://www.mayoclinic.org/patient-visitor-guide/minnesota/getting-around
As you get your plans together please check back. This site has so many members just waiting for the chance to help out!! LOL We’ll help you ‘adult’ as you get your mom squared away! You’re a rock-star daughter!! Lori.

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@tiffdavidson

@loribmt Hotel suggestions. I would like to be within walking distance and be close to downtown, which it sounds like I would be at Mayo. I don't want to rent a car if I can manage without. Would love a pool so my mom can swim and a room with at least a microwave and fridge. I am going to talk to her today and tell her that I am going. Then we can decide the rest. I just want to say I adore my step-dad, he is the best and I know he can take care of her, sometimes she just needs to tell him what she wants. Thus starts my marriage advise to my mother! haha when did I grow up?

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@tiffdavidson Welcome to Connect, and I see you have already gotten lots of information, support and advice here, from @loribmt and @rosemarya!

Definitely write out questions now. Write your own, have your mom and stepdad write theirs. some may be repeats, some may be new. If possible, sit down as a trio and review those questions together, to avoid duplication and consolidate as you can. If the medical team will allow you and your stepdad to be present during consultations, do it! The more ears and eyes the better. There will many new terms and words heard, and information given that leads to more questions. Ask to repeat something, ask for spelling, if needed. As they say "knowledge is power", and Mayo is happy to see patients be involved with their own care.

Be sure each person has their own space to retreat to, to relax think upon things, and "zone out" as needed. The whole experience can be overwhelming. Let your folks know how honored you are to be along on the journey, and how you plan to "be there" as much as they let you. The bond will grow tighter.
Ginger

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I have friends local to Rochester MN, they always want to meet me at Newts for burgers. That’s a restaurant recommendation from a local , they serve great burgers.

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@gingerw

@tiffdavidson Welcome to Connect, and I see you have already gotten lots of information, support and advice here, from @loribmt and @rosemarya!

Definitely write out questions now. Write your own, have your mom and stepdad write theirs. some may be repeats, some may be new. If possible, sit down as a trio and review those questions together, to avoid duplication and consolidate as you can. If the medical team will allow you and your stepdad to be present during consultations, do it! The more ears and eyes the better. There will many new terms and words heard, and information given that leads to more questions. Ask to repeat something, ask for spelling, if needed. As they say "knowledge is power", and Mayo is happy to see patients be involved with their own care.

Be sure each person has their own space to retreat to, to relax think upon things, and "zone out" as needed. The whole experience can be overwhelming. Let your folks know how honored you are to be along on the journey, and how you plan to "be there" as much as they let you. The bond will grow tighter.
Ginger

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@gingerw I love what you said to be there as much as they will let me. I talked to my mom this morning and she said "well I don't think you need to come" " I would hate for you to waste your time and money". So I told her to decide what she wants and thats what I will do. But it was a little bit of a strained conversation. I know she is trying to figure it out as well and I think I overwhelmed her. I have had time to process and dig in and she hasn't done that yet.

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Every family situation is different but let me tell you about an experience I had 2 weekends ago. I'm from minneapolis and had thurs and fri apts on fri afternoon I had a piece of medical equipment that needed to be returned the next day or monday by 9 am not wanting to drive 2 hours each way decided to stay overnight down in rochester where I met a young woman who had been seeking treatment for the last 7 months and what her family did was rotate people visiting her. She was from Idaho and mon would stay a few days and then dad and then cousins, aunts and uncles so she was never alone for more than a few days and when she was telling me about her family visiting her you could see it in her eyes and hear it in her voice how much it ment to her. So now for your situation can you afford it? You only have 1 mom and after she is not with us will you regret not seeing her and giving her husband a break good luck I know what ever decision you make it will be the right one for you

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