Caregivers list when things get tough

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RE: Caregivers list when things get tough

by VeteranR on Tue Apr 21, 2015 05:37 PM

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Melanie, we live in a very rural area also.  Our local credit union had a 'financial advisor' that was able to help us put everything in perspective for us.  I don't know if you have anything like that around.

Can the county Human Health Services provide you with some respite care?  My husband is just entering treatment for a different sort of cancer and I've got on board with a case worker from the county for when and if I need some absolute ME time to gather my wits.

My heart goes out to you.

RE: Caregivers list when things get tough

by SarahGrey on Tue Apr 21, 2015 11:12 PM

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Hi Melanie,

Ah yeah, the walker just won't work because of the balance issues and weakness.  A small transport wheelchair is probably your best bet now.  I know your house is full of stairs - that has to be so rough and my heart goes out to you guys... 

One thing I thought of is maybe you should have a small bag for yourself - not really an overnight bag, but kind of.  Like a bookbag with a phone charger, book, granola bars, a day or two of any meds you are taking.  For if, God-forbid, he needs to be rushed to the hospital (just so you have it).  

As for burial or cremation, if you haven't discussed that already and think it's too late to discuss now - I guess just do what you would prefer?  Would cremation and having the ashes be too hard for you/or do you want to be buried with him?  I'm sure he will be at peace with whichever you choose.

As for the shower - I think some patients feel differently and the water on his face might actually be painful.  (the pain receptors change a bit in some people I think).  Also, simply being in the shower might just be too scary at this point - fear of falling, just might feel too exposed...  Can you try cleaning him in bed?  Even baby wipes work wonderfully.

Thinking of you guys,


RE: Caregivers list when things get tough

by bobss396 on Wed Apr 29, 2015 02:05 PM

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It gets crazy real quickly when someone is near their end. Funny how at times time itself slows down, then it suddenly accelerates. Definitely odd to see it happening. 

I should have taken over the finances sooner, but Barbara took a very bad turn sooner than I expected. I couldn't even get a password to get into the online banking. I was scribbling checks for a few weeks.. made sure her life insurance was paid up too.

I had talked funeral arrangements with my SIL maybe a few weeks before Barbara's end, we handled the whole thing between us. In her will, her last wishes were stated in black and white. 

At some point Barbara had taken out our wills and life insurance papers, so they were easy to find. I made the claims as soon as I could after things settled.

Then my SIL and I hit the bank and got the accounts squared away. I got her IRAs from work transferred into my name. I closed out the credit cards she held, some memberships too. One of the hardest things was to go through her pocketbook and wallet.

After 10 months, I still struggle but keep the house going and stay busy.

RE: Caregivers list when things get tough

by Snowdr on Wed Apr 29, 2015 03:11 PM

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Thank you for those frank words. Bless you.

Mobility continues to dwindle. The past two days he has fallen upon trying to get out of bed despite my checking on him ever 5-10 minutes throughout the morning. I was able to find a handrail that slips under the mattress in town yesterday so hope that helps.  He is getting harder and harder to assist from the bed to the toilet to the chair. If his upper body strength wasn't so good I'd be out of luck. He is still only urinating 2-3 times in 24 hours. Hates water so I push the nutritional drinks and juice. He struggled really hard with help to get up 6 steps to the kitchen yesterday.  We will just scrap that even though that is somthing we have done for 25 years (anniversary yesterday) is eat at the table together. Kids are busy but help as much as they can when home.

Yesterday escaped for a few hours in the afternoon for a grocery and bank run. (older boy home) I ran into on e of our funeral directors at the store and asked him a few questions. He siad to preplan what you can so that burden is done. Whether it is obituary, music, scriptures, burial/cremation.... and to do what we want - and not worry about what others want. There is enough going on after one passes that you do't need to worry about what decisions to make and/or forgetting something.

I tend to get ahead of myself but worry about what to do with life insurance, getting health insurance for the rest of us, finding a job.....


RE: Caregivers list when things get tough

by bobss396 on Wed Apr 29, 2015 04:42 PM

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Barbara was getting to be impossible to care for as she got weaker and weaker. She had lost a lot of weight with the cancer, but gained a lot back with fluid retention. One evening she wanted to sit on the couch and watch TV. At bed time, it took me and my son to get her up off the couch. I was so afraid of hurting her or having her fall. That would have been a 911 call.

Be easy on yourself wherever you can. Once Barbara was in the hospital and hospice, it was a relief but I was still there often and other people had to shoo me out to get some sleep.

You don't really have to do any funeral planning up front. The place I went to, they do all the family funerals and they were great about things. All I had to do was bring a life insurance policy when I made the arrangements, they got paid out of that.

RE: Caregivers list when things get tough

by Snowdr on Sat Jun 06, 2015 04:27 AM

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I just wanted to give a brief update as I haven't been on the board in many weeks. Two weeks ago we moved my hubby to a swing bed room at the local small 25 bed hospital. (swing bed is designed for medicare patients that don't need a regualr room but can't go home either) My hubby is only 56 but there are no hospice facilities within 90 miles so this becmae a better option than a nursing home for him. Its quiet, wonderful care and if he would need IV meds they an give it. They can't at the nursing home. (comfort care only) We come and go as we please and I am usually there prior to a noon meal and until 7-8pm each night.

His mobility is so poor he can no longer stand himself up when they use the hoyer lift to move him - this just cahnged a few days ago. His right side has little to no function as well. Speech is poor at best - usually doesn't speak and when he does you usually don't know what he is saying or if it is correct. Its pretty miserable to witness. He still has a pretty good appetite - but needs to be fed. Occasionally takes pain pills and is on 8mg of dex a day. 


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