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Let's Discuss...the importance of caregivers

Re: Let's Discuss...the importance of caregivers

Posted by highlandlassie on Jan 2, 2018 5:41 am

I accessed the Virtual Hospice website and it was really imformative and I thank you for posting the link.  My Mum has been in bed the last four days after possibly depleting her energy during the holiday season. Doesn`t want to eat, so I am not forcing the issue, and I am making sure she always has fluids to drink should she feel up to it.  I have to take her to a CT scan tonight and I just don`t know if we should reschedule or move mountains to get her there.  Feeling very hopeless at the moment.  Feel quite alone actually.  How do we keep our spirits up and be positive when there is this impending feeling of doom surrounding everything.  She can`t walk the length of herself.  This is a woman who never stayed in bed.  Is this the beginning of what`s to come.
 

Re: Let's Discuss...the importance of caregivers

Posted by ACH2015 on Jan 2, 2018 7:05 am

highlandlassie‍ 

Is there anyone that help get you and your Mother to the CT appointment his evening?

A neighbor or family member might be the answer here. You need assistance with these appointments, and perhaps from here on in - keeping your Mother mobile.

Can your mother use a walker (a fold up that is light weight and has a seat) to assist her with mobility? Do you have a portable wheel chair (lightweight for carrying and folding into your trunk) to reduce the need for your Mother's walking?

Another suggestion - call your Mothers doctor's office and weigh the pros and cons of tonight's CT scan. Personally, I would get what ever testing completed on schedule to give the medical team the information they need in order to make decisions or monitor a condition.

Make some calls and seek the assistance you need. Family, friends or community based resources. Don't try to do this all by yourself - and don't burn yourself out.

I am sorry this is your situation. When my Father's condition reached a point where nothing further could be done, he remained in hospital until a palliative care bed came up. Perhaps you should look into palliative care options for help with your Mother in your home,  or a palliative care facility where your Mother could live.

Look after yourself. Don't do this alone. Don't let yourself burn out.

ACH2015 - Andy.

 

Re: Let's Discuss...the importance of caregivers

Posted by jorola on Jan 3, 2018 3:50 pm

Hope her scan went well highlandlassie‍  - let us know. How are you holding up?

Re: Let's Discuss...the importance of caregivers

Posted by highlandlassie on Jan 5, 2018 1:16 pm

My Mum has declined rapidly.  Day 8 of all day sleeping.  The results of the CT scan were not going to be discussed until her next appointment on January 15th.  I've asked for a sooner appointment, so we go on Monday the 8th.  Still having difficulty with one sibling in particular, the oldest.  I had arranged for mediation on Monday the 8th and had just wanted the 4 siblings in attendance but the oldest sibling wants our mother there.  I have Power of Attorney for medical and haven't used that yet, but perhaps I better now.   My mother isn't in any shape to sit through a mediation.  I have asked all my siblings to come to the house tonight and I am basically going to tell them that if my Mum trusts me as being her power of attorney, then they have to as well and going forward they have to keep their 'beefs' to themselves.  Too harsh?  Any words of advice?

Re: Let's Discuss...the importance of caregivers

Posted by ACH2015 on Jan 5, 2018 3:11 pm

highlandlassie‍ 

As the power of attorney, as you stated - your Mother has put you in charge her medical care.

You are not being too harsh, or heavy handed in your request for a meeting / mediation to advise your siblings of the current circumstances your Mother is in regarding her health.

If you believe your Mother is not capable of attending a mediation - that too is your call (as her power or attorney) and I strongly recommend you stick to your guns on that one. 

I have read your posts, and I too have felt alone, although, I am was not the only child in my Dad's case either. When my Father was diagnosed with terminal brain cancer ( Dec. 2016), my brothers were "useless" and I took the lead in his medical care and in arranging his palliative care toward the end of Dad's life. And - I was not his power of attorney - just the one son that felt Dad deserved evey reasonable intervention made available to him - until there was no further intervention.

You are surrounded with family - yet left all alone with the responsibility of caring for your Mother. I am sorry you are in this spot - but commend you for what you are doing. As I did when I had to take charge, I suggest you prepare a brief to read to your siblings. Include reports from your Mother's doctors about her  prognosis, recent assessments, and current levels of treatment available including options (if any) that you believe are the best case scenario to put into effect.

Remind your siblings - you are the power of attorney - you are in charge of your Mothers care - in your house. It's not about what they think - they have not been there physically to assist you or your Mother - your Mother has granted and entrusted you with that responsibility.

Lay down you cards and provide details to them about the current situation - and what is to occur according to your best case practices. Because as you said - your Mother has entrusted you with her medical care.

I would also take this as an opportunity to seek what assistane your siblings can offer you in your Mother's care. Appointments, transportation, meals, being there (visiting) with your Mother or anything else you believe would help you and your Moher at this point.

Print this out and read it to them tonight - with your brief.

You are in my thoughts .

ACH2015 - Andy.





 

Re: Let's Discuss...the importance of caregivers

Posted by Warriorprincess on Jan 5, 2018 5:06 pm

highlandlassie‍ , I am sorry that your mom's health is not good. I have to agree with Andy, I don't think it can be said any better. Not a easy seat to be sitting in, some tough decisions to make. Thinking of you
Liz
Compassion has no limit , kindness has no enemy

Re: Let's Discuss...the importance of caregivers

Posted by Dielle on Jan 5, 2018 6:00 pm

highlandlassie‍, I am very sorry for what you are going through right now.  Caring for your mom is a big job and unfortunately, health issues can create a lot of stress and tension within a family.  I can tell that you love your mom very much and want to do whats best for her.  Obviously she saw that within you too when she gave you power of attorney.

When you meet with your siblings, tell them that you want to make sure your mom gets the best care possible and you know thats their goal too (it also helps if you really believe this and remind yourself of it).    ACH2015‍ had a great idea for preparing a brief of facts; that way you can start off on the same page.  Listen to their thoughts.  That doesn't mean that you have to agree with them but if you fully hear them out and say "I hear you" or "I understand what you are saying" then go on to explain why you disagree it may be easier for them to take.  And maybe you'll even find points you do agree with.

In the end, yes, you can invoke the power of attorney and you should stick to your guns of doing whats best for mom.  But if you can get there without having to remind people that you can make these decisions by yourself it would be better for your family.

Of course, I realize that all this is easier said than done, when everybody's emotions will be running high.  And the number one priority does remain doing whats right for your mom.

I wish you all the best, highlandlassie.  It will be difficult but I know you have the strength to get through it.

Debbie

Re: Let's Discuss...the importance of caregivers

Posted by highlandlassie on Jan 10, 2018 5:08 am

I'm still not clear on how to navigate the chat board, so I want to thank everyone for their advice and it has made me feel so much better .  Thank you again!!!!.  Unfortunately my older sister made a decision to come to my home when she was sick, she thought that wearing a mask was going to prevent the spreading of flu/cold germs.  When she arrived on Friday night (along with my sister in law, who was sick as well), I was angry that they would do that, but I held my tongue for the 'sake of peace'.  The plan was for my sister to stay for the weekend to be with our Mother, so that I could go to work.  I went to work Saturday and by Sunday I was hit with the flu/cold.  Monday was our Mother's oncologist appointment, where all four siblings attended, the mediation was scheduled for 5:30 p.m. on Monday night.  As I knew I was sick on Sunday, I cancelled the mediation without 'consulting' my siblings, because A) I was sick and I wasn't going to spend $200.00 to sit like a zombie and B) I set it up and C) I was paying for it.  When I told them on Monday at the oncologisits appointment that I had cancelled it, the older sister was clearly angry.  She made the comment "Oh, I am disapointed, I was looking forward to it".  When we got back to my house, my sister gave me the cold shoulder and wouldn't speak to me.  I went to lie down, as I was really not well at that point, and she stood outside my bedroom door and yelled out  "  I am leaving", not in a nice tone, but in a tone that you might imagine.  She then tapped on my door, opened my bedroom door and stood there, as I was lying prone and began to berate me for cancelling the appointment without consulting them/her.   I just said ' okay, goodbye' and she then in a very loud voice asked "Are you dismissing me?".  I looked at her and said...."You said you were leaving"  and then she yelled, "Get mediation here now!!!!!"  The reason I wanted mediation was because of her and the nasty email she sent me before Christmas, she doesn't see that it is because of her and only her that it is needed.  Our Mother has not been on my sisters radar for years and years and years.  I think at this point, because she stormed out, that the ball is in her court to get back in.  I don't have time to fix her, she is welcome here, but she needs to grow up and realize that being the oldest doesn't make you the smartest or give you the licence to talk to anyone in their own home, the way that she did.  This is the sister who came down to 'visit' earlier in the year and was drunk both times.  My sister is a recoving alcoholic.  I did tell her after the second time that she couldn't come back if she was drinking, that she had to be alcohol free if she was going to stay.  She denies she was.  This is the sister who ingratiated her way into my home and stayed for 3 months, so she could walk to the liquor store.  So I see where her anger is coming from, it is because I layed down some rules and she doesn't like them.  Thank you for letting me vent.   

Re: Let's Discuss...the importance of caregivers

Posted by ACH2015 on Jan 10, 2018 7:03 am

highlandlassie‍ 

​I am sorry you have been going through what your siblings have created. We can choose our friends - but not our family. At least your older sister is living up to her previous standards.

​You are so right when you say "being the oldest does not make you the smartest - or give you license to berate you - in your own home". I am blessed with one of those myself.

​I have found it necessary to sever ties with my siblings recently. They "don't get it" and I can't change that. I have to reduce my stress levels to deal with my cancer, while doing my best for my Mother (Dad died in Dec. 2016 of brain cancer) while I was dealing with Round I of my cancer.

​Now into cancer Round II - I'm done with what I cannot change - and don't feel any regrets. I tried and that's it.

​I hope you can find some inner peace in knowing you have gone above and beyond in trying to smooth over the waters. You need to look after you to look after your Mother.

​I have a bottle of hand sanitizer at my front door. No one comes in without using it, If anyone is "sick" they don't come into my house. Call or text me - I don't need to get sick right now - thanks.

​Protect your Mother and yourself - keep sickies out. Its not personal - just good practices.

Keep well - you are in my thoughts.

​ACH2015 - Andy.

Re: Let's Discuss...the importance of caregivers

Posted by Jessyjohn on Mar 5, 2018 1:16 am

My mamma was a good caregiver. She was the one who took care of my dad when he was suffering from cancer. Mamma was there with him until his death in each and every moment. Since daddy was very huge, mamma had struggled a lot to lift him from bed to take him to the bathroom. Although we children had suggested appointing a home nurse, mamma refused it. 

Re: Let's Discuss...the importance of caregivers

Posted by lovenicky on May 7, 2018 5:18 am

My husband is a good caregiver. He's trying to hold down a job, take care of 2 young children, drive me to treatments and appointments, doing all the household chores, etc. I try to do some household chores on my better days (e.g. get breakfast, school lunches, and dinner ready, vacuum one room at a time, etc). I'm so grateful for his help. His father died of lung cancer a few years ago and my husband was a complete mess then. However, when I was diagnosed with lung cancer, he stepped up quickly and fulfilled all these roles that I used to do. He is amazing!

Re: Let's Discuss...the importance of caregivers

Posted by Lacey_adminCCS on May 7, 2018 10:49 am

lovenicky‍ 

He sounds amazing!! 

Re: Let's Discuss...the importance of caregivers

Posted by Brighty on May 7, 2018 11:26 am

Lovenickey I'm so glad you hAve such a loving husband who is there for you!!!!

Re: Let's Discuss...the importance of caregivers

Posted by Laurineb on May 24, 2018 11:24 am

Im not sure there's a book on how to do this, you just seem to go with what comes up & before you know it, your exhausted. Feel the disappointment of people not really being able to help, either its too much or just dont know how. My partner isnt one to ask for help which is sad as im sure it could make life easier. Its a relief to read other's stories. I just hired a friend to come into cook and lite clean on a weekly basis. Find after chemo im a bit of a wreck as well so important to get good food into both of us. Im still suffering from exhaustion so we both have to re-think strategies for all the appointments. I keep hearing one day at a time, so at least there is some progress and im looking frwd to getting some of my life back as well. Fingers crossed .

Re: Let's Discuss...the importance of caregivers

Posted by Lacey_adminCCS on May 24, 2018 3:52 pm

Laurineb‍ 

Good to hear from you! If only there was a book- but in away that is where discussions like the ones that happen here come in.. so you can hear from others who have been there, learn a bit, share a bit, and keep going.

I'm so glad you have hired some help. You can't do it all alone. 

Do you work also?

Keep talking we are listening.

Fingers crossed for you,
Lacey

Re: Let's Discuss...the importance of caregivers

Posted by Laurineb on May 24, 2018 5:29 pm

I do work however took some time off when things were touch and go. Im planning on going back next week as feel stronger and know its probably good for both of us. I just enrolled at 'wellness' ctres, and had a reiki treatment to get energies back up. Its a free based services for patients as well as caregivers...was so very thankful for it and plan to attend to help keep myself better balanced. I really miss working and feel i need a change of perspective as well. It becomes too overwhelming, at least for myself. I had some real guilt and worry about leaving him alone...oh

Re: Let's Discuss...the importance of caregivers

Posted by jorola on May 25, 2018 1:01 am

Hi Laurineb‍ 
I wish there was a step by step book and that everything went by the book. Wouldn't it make this whole thing easier? I experienced burn out from trying to keep appts straight, get my husband back and forth to them, keep the house, do all the regular day to day stuff. I just couldn't do it all. We sat down as a family and had to figure something else out. My sons (who were older 16 and 20) totally took over all the house cleaning. They did do a really good job and were willing to learn and try hard too. They also helped with cooking. Simple meals but good enough. We had a real good friend who took my husband once a week to treatment. Even just once a week break made a difference. I saw my dr about the depression I was in. With counseling and medication I got stronger again. In turn I was able to be more focused and stay better on top of appts. My husband did his best to help remind me as well and we tracked everything on a special calender on the fridge. I hope by sharing this you find some of it helpful. Is there anyone else that can help you other than the friend you have hired? I hope things become more manageable for you.
Jodie

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