Caregivers list when things get tough

16 Posts | Page(s): 1 2  Next 

Caregivers list when things get tough

by Snowdr on Fri Mar 27, 2015 03:07 PM

Quote | Reply

I am the caregiver to my hubby who is almost to the 17 month mark with his GBM brain tumor. He has battled this monster for the third time (surgery, chemo/rad, new chemo/Avastin infusions and recently 10 more high dose reirradation sessions) and sadly seems to continue to decline. While we don't give up hope and that these symptoms could be related to the recent radiation I also want to be prepared should they be from more progression. New MRI on Monday so we should hopefully have some idea in a few days what we are dealing with.

We live in a rural area of ND. There is no hospice since we are 90 miles from a bigger facility. I am going to speak with both the local nursing home as well as the local small hospital if they would be able to make accomodations. I am sure there will be a time where I can no longer meet his needs at home, especially since we have a house on 3 levels with many steps.  I do not want him to die here - weh ave 4 kids and don't need that as a forever memory every time they walk in the door. They aren't little - but are all home (16 yrs+).

Surgery effected speech/language/comprehension. Recently with progression there is also the added issue with mobility and simple tasks. (anything with multiple steps is difficult such as making a simple breakfast - he might get cereal and milk but no clue about the spoon and bowl)

I am trying to get affairs in order (big things like POA, will were all done long time ago) such as making sure my name is on accounts, have a Birth Certificate, medical facilities have POA, Medical directives on file... I dbl checked that IRAs all have me listed as beneficiary.

I am looking for hints, tips, suggestions that other caregivers might have that I should also be doing. I would prefer to get some things in order now rather than later when there is added stress.  The worst is yet to come we know.

Thank you all.

Melanie

RE: Caregivers list when things get tough

by bobss396 on Fri Mar 27, 2015 03:38 PM

Quote | Reply

At home hospice is very difficult and I made the decision to have Barbara put into a facility. The level of care at home would have not been good enough. Plus I too didn't want that bad memory hanging over the house.

Often nursing homes and hospitals have a few hospice beds in them. Talk to your hospital social worker first, they would probably know what is around.

Hints.. good you have the POA squared away. Look at your homeowner's insurance to see if there is a death benefit written into the policy. This is an option on car loans too.

Gather up all life insurance policies, a will if there is one too. Identify all bank accounts. Have all your bills in one place and see what gets paid when so you can budget accordingly.

If he was working, talk to the HR about any accrued vacation or life insurance he may have had there. Find all credit cards that were in your husband's name. Also anything he belonged to. I had to cancel many of Barbara's credit card accounts.

I'll add anything else I can think of later. 

RE: Caregivers list when things get tough

by number9 on Fri Mar 27, 2015 03:52 PM

Quote | Reply

Melanie, thinking of you. Perhaps the following link will touch on some things in ways that connect to you at this time (from our brain cancer friends on CC, back in 2010).

http://www.cancercompass.com/message-board/message/all,52214

Hugging your heart from here.

De

RE: Caregivers list when things get tough

by Snowdr on Fri Mar 27, 2015 04:01 PM

Quote | Reply

Thanks Bobss396, I will see if our tiny hospital facility has a social worker. The one at the cancer center only knew about the program they offer.

My hubby was self employeed and I worked for him the past year so we are both of out work with no benefits. He is on SS disability though as well as two of our kids who are minors. That stops the month he is gone and our one son graduates in May so that one ends as well. I did fill out forms to try and collect some unemployment as I am unable to even look for a job at this point due to being a caregiver. Will have to speak to someone though as one of their rules is you have to be actively looking for a job. (small town not much opportunuty)

What are you saying about a car loan?

I have always pd all the bills and they don't care who sends the check or the online payment.

Last year had to cash in some retirement monies to pay taxes and this year had to get a partial surrender on one life insurance policy to cover some expenses. Now I am in the works of trying to sell his business - as if life didn't have enough stress!

I have been trying to switch over things like the phone and newspaper to my name or both names and cant even do that without a POA! I better make about 10 copies.

THANKS - I need to make lists I guess.

Melanie

RE: Caregivers list when things get tough

by VeteranR on Sun Apr 19, 2015 12:18 PM

Quote | Reply

Melanie, I'll jump in on the loan issues.

Many loans have an option of a 'death benefit' if one of the debtor's pass, the loan is paid off.

RE: Caregivers list when things get tough

by SarahGrey on Mon Apr 20, 2015 11:10 PM

Quote | Reply

Hi Melanie,

The one thing that comes to mind is if he doesn't have a DNR, he should get one soon.  Without one, I was told that the ambulance needs to be called and they have to do CPR...  :(   

Regarding switching things like the newspaper and phone into your name - is it a rush?  There's so many other things you're dealing with now.  The newspaper won't stop coming if it's still in your husband's name.  And the phone as well will still be ok.  It's nearly two years for me and I still have the majority of accounts (electric, cable, etc) in my husband's name.  Sure, switch them - I just mean it's not something you need to worry about now.  Like you said, you pay all the bills anyway and they don't care who sends the check.  

This is such an awful time for you all - I wish you nothing but peace and comfort through it...

Sarah

RE: Caregivers list when things get tough

by Snowdr on Tue Apr 21, 2015 01:46 AM

Quote | Reply

Yes Sarah - the DNR, POA, will and all that good stuff got done the night before surgery 17 months ago. We had none of those so it was last minute and thankfully a good friend is a lawyer and could get those done on the fly. I do need to have copies dropped off locally - they are at the bigger hospitals we have been to but not the little local one. One my to-do list this week. I made sure my name is on acct like the retirement funds and life insurance. I got permission last week from insurance that since we have no hospice facility or benefits locally (100 miles and they only travel 45) we could use the local nursing home and they would cover it as long as he is listed under palliative care.

I can't help put think there are things I should be doing. Do people really preplan funerals or talk with a funeral director ahead of time? I do't even know if he would prefer a burial or cremation!  He wouldn't talk about it before and pretty certain he wouldn't understand now.  Almost every question you ask is NO or shrugs his shoulders. Even if you ask if he is hungry - he might shrug his shoulders. :-( 

Tried a walker the other day - that didn't work at all.  We have lots of carpeting so that wasn't a help and on top of it he kept feeling like he was going to go over backwards. (usually leans to one side) Got mad and chucked it.

HATES, HATES, HATES taking a shower. There is a chair, he has my help even. Cusses the whole time. Hates water in his face as well. Its strange. Mr Clean he use to be and now doesn't think to even wash his hands or brush his teeth. (or doesn't care - not sure which)

I keep trying to remind myself how fortunate he is that he isn't in any pain.  Brain Cancer is an ugly, ugly beast.....  Especially when the tumor is on the speech and language centers. Doesn't read, doesnt write, doesn't speak a complete sentence (or one that makes sense).... But to have one more *normal* conversation or hear him say something extra sweet.... that would be nice. About 6 weeks ago he told me I would be ok.  I took that to mean ok when he is gone. Broke my heart - but I knew it was a good thing for him to think that as I am sure it has been a big worry about me and the kids these past 17 months.

Thanks again.

Melanie

RE: Caregivers list when things get tough

by eternalife on Tue Apr 21, 2015 02:03 PM

Quote | Reply

Hi Melanie,

I must applaud you for forward thinking on " getting the affairs in order", It is so often the case when one dies, everything is left for the surviving spouse to handle. It is that time old thing, no one wants to deal with death until it happens.

If you are able to find all the accounts, credit cards, business stuff and keep it together, list out dates when the accounts are payable... that is a start... I was left to figure that out, as my dear husband being an accountant did it with his eyes closed every month.. LOL... it was a nightmare for me because he had done it all for so many years. As for changing names on title , etc.. leave that.. you will be paying the bills ... $$$ is  $$$, no one is going to quibble .

Save your energy and parcel out your time each day.. the future is uncertain and time spent with hubby is far more valuable than all the paperwork..it will always exist... taxes are certain... it is not easy.. don't sweat the small stuff... this puts everything in perspective... I am a year and a half out, still have things to do.. most major stuff has been handled.

Take care,

Best

RE: Caregivers list when things get tough

by JenniferONeal on Tue Apr 21, 2015 02:05 PM

Quote | Reply

Hi Melanie,

There may be some things which it is better to wait on--I went to have our bank account drop my husband's name and then decided to wait since we're still waiting on some things from Social security that will be coming for him--even though I have a POA filed there they told me just to wait until everything was through.

I would say that if you can do it, a trip to the funeral home is not a bad idea, just to see what it's all about. I wish we had done it when Patrick was healthy but he never had time. It's hard when you're in the middle of grief to go and pick things out. I had never done it before and all of the sudden you have decisions to make about a plot, casket, vault, service, who will be involved, reception and when everything will take place. It's like trying to plan a wedding in two hours. My husband was a pastor and funerals were a regular occurrence for him but I had no idea all that was involved. Thankfully I didn't have to choose a marker, that can be done later, but you do want to think about whether you will want to go to a specific place to think about him (I took Dairy Queen to my husband's grave a few times and my daugher thought that was weird) or whether that's not a big deal to you. Also, you may want to find a few nice pictures that can be used either in an obituary or on a table at the funeral.  These were all things that I wish I had done earlier. 

Also, while he's still here, look for little windows of joy that can come unexpectedly, when all of the sudden a person's mental cloud may lift briefly and you can share a moment to connect. For us that happened several times, even when Patrick could no longer speak or move but I knew he was "there". On our anniversary he was declining so rapidly but we could still sit and try to remember some of our past anniverary celebrations. Now I look back at those times as being very special.

Praying for you--Jennifer

RE: Caregivers list when things get tough

by Snowdr on Tue Apr 21, 2015 03:07 PM

Quote | Reply

Thanks Ladies..... Right now I just wish I had some ambition. Hard to muster it up to even try and clean house let alone plan our sons HS graduation in 5 weeks.

  I have a lot of idle time (so should be doing something) as he sleeps at least 15 hours each night. Sometimes getting up to pee - lately not.  Seems he only goes to the bathroom twice a day. Yesterday at noon and 9:30pm before bed. He even ate a bowl of watermelon in the afternoon! Then I feel guilty I am not sorting, cleaning, organizing, dustin, cooking or doing something.

I don't seem to even dare go outside to do a little yard work for I fear he will try to get up on his own and fall again. Friday when I was gone he fell twice. Once in the bedroom at the foot fo the bed and again off the toilet. (kids were home) He has some awful bruises on his legs. Course the one time I try to sneak out for a little time away in several weeks and that happened.

I feel guilty I am not taking our son to tour colleges and programs. I feel guilty I am not a blubbering mess - does that seem strange??? Always the stoic one, ever the strong one... I think parts of me have checked out already... with speech and language having been the major issue for 17 months there hasn't been that same closeness we have had the past 25+ years. He hasn't been able to convey emotions (never was good at that anyhow) and I don't even know how he is feeling about all this. He knows his body is failing as he gets ticked off when he falls or his right hand or leg aren't doing what he wants them too. But there is more and more confusion as well. He doesn't even think to wash his hands, brush his teeth and hates a shower.

I printed some of the medical records last night and will try to get the rest done today. I will make copies of the POA and DNR as well and make sure they are on file at the local hospital and nursing home. I think maybe I need to make a small to-do list so each day I feel like I get something done. I don't even remember the last time I made a really nice home cooked meal for the kids. Since hubby eats everything with his fingers we try to just make things that are finger friendly. Seems to go over better than trying to help him with a spoon or fork or feed him.

A couple weeks ago I also ordered a couple copies of his birth certificate since I could not locate one. I know I will need those later on. At least I have that.

My heart breaks for our 4 children (they ae 16-23). I know at this point in our lives (25th anniversary next week) we should be starting to think about retirement, vacations, grand children and poof - its gone.

I haven't the faintest idea about investments or business. We live in small town so not even sure what type of person I should or will have to meet with to make those decisions. Certainly not a good idea to just put life insurance in a savings acct. I have signed papers to sell my hubbys chiropractic office/business but it takes 90 days to process through the bank. At least that will pay off our mortgages.

I was a stay at home mom for many years and then worked p/t at the school for 8 years. After diagnosis took a lot of time off and then worked at my hubbys office for a year. Now I don't even qualify for unemployment since my hubby owned the office. The moment the sale of the office is final and changes hands our group health insurance disappears. Yikes.

OK - off my pitty party stool - thanks for the ear ladies. I think my brain goes on overload and trying to micromanage things has me accomplishing absolutely nothing.

Hugs,

Melanie

16 Posts | Page(s): 1 2  Next 
Subscribe to this message board discussion

Latest Messages

View More

We care about your feedback. Let us know how we can improve your CancerCompass experience.