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How Are All The Caregivers Doing?

Re: How Are All The Caregivers Doing?

Posted by jorola on May 25, 2020 10:49 pm

Hello Lovedove‍ 
Being a caregiver is a difficult job. I am caregiver myself and it it has taken on a very different look during this strange time. I understand what you were saying in your post. My husband has this most wonderful habit of replying "not much" when I ask him what the dr said to him. Lord love a duck! Really? I love him but he can be so frustrating. How is that suppose to help me to help him, right?
Some drs are ok with letting you record the appointment. Maybe check into that? That way it is like you are there. Or find out who his head nurse is so you can call and speak to them after and get the low down from them. Often patient advocates in the treatment clinic or hospital can help set this up.
I know this can be so overwhelming especially with everyone looking at you to manage it all. It is not easy but the sooner you tell everyone you cannot do it all and get everyone to chip in and do their part, including your boyfriend, the better off everyone will be.
Reach out for help if you need it. Counseling services are usually available through your husband's clinic - although it maybe done virtually right now. You could also speak to your family doctor.I can also be reached by private message if you ever want to/need to talk.
Take care of yourself. That is the most important. If you are not in a good space, you won't be able to help anyone.
Sending strength and good vibes,
Jodie
Live, Laugh, Love

Re: How Are All The Caregivers Doing?

Posted by Cynthia Mac on May 26, 2020 12:37 am

Hi, Lovedove‍ , I’m in a father/daughter situation, which is a little different than yours. Is your relationship such that you are a “family” or his emergency contact with the hospital? If you are authorized to discuss his case with his doctors, then you can contact them if you really need to have first-hand information. If you are not, then you’ll have to get the information through your boyfriend due to HIPPA laws.

I know well the frustration when you want to care for someone who doesn’t want to care for their own self. Some of my father’s lifestyle choices got me very frustrated, but the only person that hurt was me. When he was confronted with my concerns, he just shrugged his shoulders. If he refuses to take care of himself, then you need to set clear boundaries. This will help you maintain your ideals and/or keep you from enabling his bad behaviour. I’m pretty sure that if you catch yourself enabling him, you won’t feel great about yourself, so I really encourage you to decide what your role in his lifestyle will be, whether it’s cooking him French fries or buying him cigarettes, or none of the above. Be very sure, though, that you are willing to hold your ground when push comes to shove, because he may try and test you.

I came into the caregiving role with no background in medicine to speak of, and it can be tricky to know what questions to ask, and even if you ask them, you don’t always know if they’re important in the grand scheme of things. I recommend that you seek out some good reliable information. You didn’t say what type of lymphoma he has, but I did find this brochure about Hodgkin Lymphoma, and you can do a search on www.cancer.ca for information about other types of lymphoma.

Thanks Wendy Tea‍ For tagging me, and Brighty‍ For providing your insight about “patients behaving badly.” It sure doesn’t make the caregiver’s job any easier.

Lovedove, I’m glad you found us. This is a good place to vent, ask questions. Hopefully we can allay some of your fears.
“When the root is deep, there is no reason to fear the wind.” - Japanese saying

Re: How Are All The Caregivers Doing?

Posted by Clover4 on May 31, 2020 8:09 pm

Hi, this is my first post and my first time in a forum.

My partner of 21 years is waiting for a diagnosis - lymphoma is suspected. We will know in 5-7 days. He had an armpit lymphnode removed on Friday.

This is my 5th time as a caregiver (Mother/Breast Cancer, Sister/Breast Cancer, Father/Dementia, Brother/lung cancer - all have passed since 2011) and I am in a bit of shock that I am at this junction again.

My partner was walking 30 days ago and is now almost bedridden.
It is surreal and feels like a bad dream.

I'm struggling today because I am hypervigilant to all the "signs" of decline. I spent 36 days in the hospital with my Sister and learned a lot about the dying process. I find it so hard to resist looking up "end stage" symptoms on the Internet (he does not know I do this)
We had a bumpy day today because a new symptom showed up and it made me so nervous. He is eating less and less and has lost 70lbs since November.
My mind keeps flashing back to my Sister and all of the stages I saw her go through right up until her last day.
This makes me feel so guilty as he is still so optimistic that this can still be turned around with treatment.
I recognize that we don't have an official diagnosis yet and am trying to curb my anxiety and negative thinking - but it is a challenge.
We do not have any financial or legal affairs in order and I had a panic discussion with him and he looked so sad. I felt like a monster.
I just finished 5 years of dealing with lawyers because my parents will was considered "unclear". It took so much energy and was an awful experience as it brought up so many family issues I thought I had  put to rest years ago.

I just started feeling like I could finally start grieving and living life again.

My partner was my rock through all of those losses. I spent many, many days away from him during those caregiving days and he fully supported me.
Those losses were sad and hard but losing him is almost unimaginable.

I have counselling in place and believe  in the healing of talk therapy. 

I am grateful this site exists for all of us navigating this world of Cancer.

Re: How Are All The Caregivers Doing?

Posted by Brighty on May 31, 2020 9:28 pm

I'm so glad you found this site Clover4‍ .    Wow, 5th time being a caregiver.  I'm sorry you find yourself having to go through this yet again.      I know it's hard but try for now not to jump too far ahead of yourself to the worst case scenario.    I know this is far from easy and the waiting for a diagnoses can be brutal.   But you once you get the answers you are looking for, and a plan is in place, you will start to feel a bit of relief.    It sounds like you went through a very traumatic experience with your sister which affected you a lot.   You have taken some very positive steps by putting some  councelling in place and by logging on here for support with people who get what you are going through.     I want to address the issue of the weight loss.     What type of food is your partner able to eat?    Can you try giving him soft foods, like cream soups, yogart, shakes such an Ensure, Boost, perhaps baby food, smoothies, and things like that?    The more protein and more calories, the better.   Perhaps smaller meals more times daily.     A nutritionist or dietician can advise on the best type of foods for him to try that will be easy to digest and have the highest amount of calories.     I think every hospital has a dietician , and they will give you a meal plan plus sometimes free samples of things.      I'm glad that you are communicating with your husband regarding the financial and legal aspects of things.   Everyone should get those things in order no matter what their situation is.   Hospitals also have social workers on board that can talk to both of you regarding that as well.      One of the keys to getting through this is to have good communication with each other.   Talk to each other, discuss how you each are feeling, what you are thinking, what his needs are, your needs are.     Get everything out in the open.   Have the hard talks, encourage each other to be honest about how the other is doing.     My partner was never open with me about his feelings, he suffered in silence.  I don't know if he wanted to protect me, or he was too depressed to talk to me.............but it's much better to do this as a team.    Start off with open communication, and not to let it get to that point where you can't talk to each other any more.     It is happening to both of you, and you both need support.   Do you have anyone else that you can lean on to talk to?   Someone you feel comfortable enough to confide in other than your partner?   Someone that can also provide a distraction for the times you need a break?    Someone who can help you with practical things that might need getting done?    I don't want to overwhelm you with too many questions now when you don't have all the facts yet.    I just want you to know that there are people that will be here for you to get you through the process .....whatever you do find out in the next few days.     We will answer your questions, provide you with resources, or just listen when you need support.    You are in good hands here, so take a deep breath, and rest assured that we have your back here.     Please post when you have more information.      
 
Help is out there. All you have to do is reach out.

Re: How Are All The Caregivers Doing?

Posted by Cynthia Mac on Jun 1, 2020 9:15 am

Hello, Clover4‍ , I am very sorry for the reason you have for seeking us out, but I believe you will get some support from it from others who are on similar journeys.

I’m caregiver for my Dad, who has metastatic lung cancer, and, like you, there’s been a recent and sudden shift in his situation. It’s so hard to see people that close to us appear to be “slipping away.”

Brighty‍ Gave you some excellent observations. She walked me through some of the first of MY caregiving days.

Are you and your husband able to get your affairs in order? Is he of clear enough mind? If possible, I would bump that to the top 5 of your priority list, especially given that you have past experience with an “unclear” situation. This is important at any age, and I know we have some young adults here (early-mid 30s with small children) for whom this is important, too. My mom was very pragmatic about this, and I’ve followed her lead.

Please try not to let past trauma affect you now. We have a saying here that everyone’s cancer journey is different. It’s good (but very awful) that you have this previous knowledge, but I encourage you not to let it guide your thoughts. Someone posted a while ago here to focus only on “what I know for certain,” and this one line has helped me a lot this past week.

You certainly sound as though you communicate well, and, as Brighty said, keep those communication lines open if your husband will have it. As you already know, the one gift cancer gives us is the opportunity to say everything we need to say.

Please vent here whenever you need and provide updates whenever you’re able.
“When the root is deep, there is no reason to fear the wind.” - Japanese saying

Re: How Are All The Caregivers Doing?

Posted by Clover4 on Jun 1, 2020 11:13 am

Thank you for your words of support 💐

Yesterday was just one of those bad days. I woke up too early and it set the day off on the "worry track" lol.

Weekends are hard when the medical system is not operating at full capacity.

I'm glad it's Monday and one day closer to hearing back.

I do have some great help and am so grateful. I tend to not share too much with them as they are also anxious about the future and usually look to me to tell them "things will be fine".

I agree 100% that I should not get too far ahead of what I know is certain. I like that saying "what I know for sure" and will use that as a Mantra.
Being "in the moment" is something I am currently working on with counselling to keep balanced.
One Mantra I use a lot - "at this moment I am safe", brings my thinking back to center.

My partner did agree to move in the direction of getting things in place and prepare for all outcomes. I will ask his Sister to assist as well as he respects and trusts her judgement.

He is still of clear mind. I agree that it should be a top priority for all involved and will gently move him in that direction.

Thank you so much for reading/listening. I felt instantly lighter sharing and will remember to continue.

It is a "club" and not everyone gets it if they haven't walked this path.

A big hug to everyone out there on this path. I will pray for everyone and their loved ones.

🍀

Re: How Are All The Caregivers Doing?

Posted by Cynthia Mac on Jun 1, 2020 2:42 pm

Oh, good. I’m glad you can get those details looked after.

And “I am safe” is a favourite of mine, too. Louise Hay is one of my favourites!
“When the root is deep, there is no reason to fear the wind.” - Japanese saying

Re: How Are All The Caregivers Doing?

Posted by Clover4 on Jun 2, 2020 8:55 am

So....things changed yesterday.

He called me to his bed and said he'd been having dizzy spells for an hour.
He agreed it was time to go to ER as suggested by the team that treated him on Friday during his surgery - if there were any changes.

He was so weak as we loaded him into the car. It is still one of the hardest parts of a sickness to observe. When the person changes so dramatically from strong to frail. 

He had 2 CT scans, one with Angiogram and both were clear.

He is extremely anaemic and I am sure that was the culprit.

He was admitted last night and I think he was relieved. For someone that chose to avoid seeing a Dr. for 20 years, I am thankful he  sees them as saviours now. He is a good patient.
He will see an Oncologist today thankfully.

Leaving him with a porter to wheel him into a waiting room is just so painful. I forgot to hug him it all hapened so fast 😞

Thankfully he was strong enough to text throughout the day 😊

My whole being was fuelled by adrenaline yesterday - thankfully - so I didn't dip down into sadness or despair. It's amazing that the body does that to keep us safe and in fight mode.
I waited in the parking lot for 9 hrs with other caregivers in the same boat. I didn't mind as I knew I was as close as I could be.
The ER staff were amazing - giving me updates at the front door and running things in to him for me. They truly are heroes.

I thought I might crash last night but I thought again about the saying "what I know for certain" and it kept fear in check.
Thank you for that again :)

Coming home alone and not having your person with you is still so "weird". I can't think of a better word. It just never feels right. He is always here - an introverted type that is a complete homebody.

My dogs joined me in bed for the first time in a month since this started. I am blessed by their unconditional love and companionship. They, too, have been upset by these changes.

Anyways, today is a new day 🌄
Progress is being made and I am happy for that 🙏

Thoughts and prayers for all 

🍀



 

Re: How Are All The Caregivers Doing?

Posted by Brighty on Jun 2, 2020 9:12 am

I'm so sorry Clover4‍ .   Yoir post brought tears to my eyes.  I know how painful it is.  My Danny was a strong muscular  guy whose work involved physical  labour.     He lifted 200 pound items... then when cancer hit he turned into a skinny 97 pound man.   I also remember  having the volenteer wheeling  him in for treatment.   I kept it together  in front of him and as soon as he went in I LOST it. 
He was the same too..... no doctors no dentists.  Ever.    Didn't even have a health card.    Then when cancer struck it was constant  doctors and hospitals.  Please let us know how the oncology  appointment  goes .      I'm so glad your dogs were with you last night for comfort.     My cat Vinnie does the same thing.   Pets are so wonderful  and so sensitive.    I truly don't know how I would have gotten through without my pet.     Anyways keep us updated.    It's ok to have a good cry by the way.        
  
Help is out there. All you have to do is reach out.

Re: How Are All The Caregivers Doing?

Posted by Clover4 on Jun 2, 2020 10:23 pm

Thank you Brighty for sharing :)

My guy is still in hospital holding on. He hasn't seen an Oncologist yet so maybe tomorrow.

They are going to drain his abdomen of fluid build up- (paracentisis) as a next course of action.
I don't feel great about this (past memory trigger) but I will hold onto hope.
Reminding myself that his journey could be different etc.
This will at least provide some comfort as he waits.
He is still in the ER and not sure when he'll move to a medical ward yet.

I woke up too early again this morning, so I was really feeling tired all day. I know sleep deprivation doesn't help mood so I'm going to try hard to get a better sleep tonight.

We had our first video chat tonight and it perked us both up 🥰. How amazing is it that we have that technology. I walked around with the camera and he could see "home" for a while.
He wanted me to read him the newscroll on CNN 😅

We miss each other terribly and it helped to ease that ache.

We've been together 21 years now.

We started together with him caring for me after a major surgery just 3 months into our relationship and now it's my turn.

Praying for a miracle every second of every day - for us and all of you too.

 

Re: How Are All The Caregivers Doing?

Posted by Brighty on Jun 2, 2020 11:06 pm

Thank you for your reply Clover4‍ .  I hope your guy sees the oncologist  tomorrow.    Let me know.    Sleep deprivation is a lousy feeling!!  Hope tonight brings you a much better sleep.    I'm glad you got to chat together. . Thank goodness  for technology !  Anyways sleep tight and keep us updated on what's happening on your end.   

​​​​​​
 
Help is out there. All you have to do is reach out.

Re: How Are All The Caregivers Doing?

Posted by Cynthia Mac on Jun 3, 2020 6:52 am

Clover4‍ , I could easily have been one of those caregivers waiting with you in that parking lot.

You see, my Dad’s been in hospital a week now. He took a couple of “odd spells” as he describes them. You’re fortunate to be able to converse by video call. Dad’s not one to carry his cell phone with him, so he doesn’t have it now, but he’s also having delirium, so I’m not even sure he could use his apps if he had it.

It truly is wonderful, that this technology exists, but it’s still hard to watch your loved one going away in an ambulance, knowing you won’t be able to see them until they’re released.

I’m glad you’re taking steps to care for yourself. For me, I don’t know what the future holds - how much care Dad will need going forward, etc. - so I’m trying to get my own house in order and take those moments for self care I can, too.

As Red Green says, “We’re all in this together. I’m pullin’ for ya.”
“When the root is deep, there is no reason to fear the wind.” - Japanese saying