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Old 03-18-2016, 09:48 AM
 
Location: Wisconsin
16,941 posts, read 17,243,367 times
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Quote:
Originally Posted by convextech View Post
Is there no way you can apply for some kind of assistance & have your husband put in a home? You have to put your own health first at this point.

Thank you for your concern. I am hoping that once I get the condo finished and get caught up with everything else it will go better. The stress of downsizing and handling everything else, basically on my own, is just so overwhelming right now.

My state has a program called "Medicaid & the Impoverished Spouse" (impaired spouse in nursing home) that is something that we will definitely need in the future. My short term planning since my husband's accident has always included that as a possible long range plan, as I will not be able to pay for memory unit nursing home care (or regular nursing home either).


Unfortunately, we are part of that large group of people, who do not have enough money to pay for care out of pocket but have too much income/money to qualify for special low income programs. Our financial problems are mainly because my husband has been impaired for so long (at least sixteen years).

Last edited by germaine2626; 03-18-2016 at 10:05 AM..
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Old 03-18-2016, 09:57 AM
 
Location: Wisconsin
16,941 posts, read 17,243,367 times
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Quote:
Originally Posted by germaine2626 View Post
Update--March 18, How do everyday, ordinary people manage full time caregiving?


My husband's Traumatic Brain Injury was six and a half months ago. And, I am totally, completely, utterly exhausted and can't imagine being able to handle it much longer. The first ten weeks was spread over three separate hospital stays and two separate times in in-patient rehabilitation and he now has been home four months and needs (basically) 24/7 supervision.

Of course, it really has been much longer than six and a half months for me as a caregiver because my husband actually has been considered permanently disabled, due to a very slowly progressive type of brain damage, for over five years. While he could handle most aspects of daily living, he has been unable to work, unable to learn new things, and his impairments have steadily increased since late 2010.

And, his actual decline, and my need to "pick up the slack" started more than sixteen years ago (by 2001 my husband had lost the cognitive ability to be a trial attorney and was forced to take a menial job) and his brain damage was medically documented over ten years ago (by brain scans & other "physical" medical tests as well as cognitive assessments). Although, both of us were in serious denial for the next five years.

So, while I have been involved in a caregiver "sprint" these last six and a half months, I really have been doing a caregiver triathlon for the last five years and a caregiver marathon for the last ten to sixteen years.

Perhaps, everyday, ordinary people are able to handle full time caregiving because they have not already been part-time caregivers, with increasing responsibilities and devastating financial ramifications, for ten to sixteen years already?

It is the middle of the night and I can't sleep, just thinking about all the things that I need to do.

It is sort of like playing the game "whack a mole". I get one tiny thing completed and then another pops up. I get that thing completed and two more pop up. I manage to get those two things done and four more pop up. And as I get more and more tired it is harder and harder to manage.

I try to be happy when I get something finished. Today, I sorted though a couple of boxes, completely emptied the entrance way storage closet at the condo, as well as organized things for people coming on Sunday to move boxes & a few antiques from our condo to the apartment storage area. All while my husband was in Brain Stretches & adult day care. But, then I still had to do "all the rest" tonight with DH with me, go to the bank, go to the gas station, pick up a few groceries, make dinner, do the dishes, clean the kitchen, etc. I managed to spend some time on the computer, answer some emails, pay bills, etc. while watching TV with my husband (or while pretending to watch TV with him).

But, while I am happy that I did all those things there are still so many things that did not get finished today. Important things that did not get finished, like refilling prescriptions, doing insurance paperwork, checking on some of my husband's medical tests, figuring out how I am going to sell our condo (which agent to use, when to list, finish the downsizing, scheduling the appraiser), sending a package with Easter stuff to our grandchildren (I still haven't found the time to send their Valentines-they are still sitting on the kitchen table), sending a letter to my dying aunt, etc. etc. etc. And, most things just for me (such as making my dentist & doctor appointments) just get put into "there is no time left" box.


It is now 4:30 AM and I probably should try to go back to sleep as I have lots & lots & lots of things that need to done when I get up in a couple of hours.


It is just so depressing.

I finally got to sleep at 5:30 AM (as I was trying to find a solution a new conflict/crisis that I discovered yesterday).


The door alarm woke me up at 8:00 AM. My husband said that he was on his way to class (Brain Stretchers). He was up and completely dressed, even had his coat on, and was ready to go. I do not even remember the last time that he was up and dressed at 8 AM, it probably was several years ago.


The good news is that I managed to solve the conflict that I was trying to fix at 5:00 AM. The bad news is that I discovered even more things that I need to do.
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Old 03-18-2016, 10:39 AM
 
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I wish one of your children would move in with you and help out. I cannot imagine letting my mother take on all of this alone.
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Old 03-18-2016, 01:54 PM
 
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Somethings are going to fall through the cracks. Unfortunately that's just how it is.

I think that's what happens to everyone, whether they've been caregiving for 3 months or for 5+ years. Somethings get dropped, and you just learn to cope with the fact that you're doing the best you can.

I agree that with the condo sale on top of things, you've just got a tremendous amount of stuff going on right now. I hope it settles down once that is taken care of.
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Old 03-18-2016, 02:41 PM
 
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I do worry for you.

Are you renting right now? When you sell your condo, are you planning to buy another? I ask because you may want to try to "protect" those funds from selling your condo or else they will be spent down if your husband requires more around the clock care in the future. Spouses need to protect themselves when catastrophic injury/health needs take over their life.

Just make sure you have advice from a good Elder Care lawyer. Especially if you haven't received your inheritance yet, and you can somehow preserve it for your own future.
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Old 03-18-2016, 06:06 PM
 
Location: Wisconsin
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Quote:
Originally Posted by sfcambridge View Post
I do worry for you.

Are you renting right now? When you sell your condo, are you planning to buy another? I ask because you may want to try to "protect" those funds from selling your condo or else they will be spent down if your husband requires more around the clock care in the future. Spouses need to protect themselves when catastrophic injury/health needs take over their life.
Just make sure you have advice from a good Elder Care lawyer. Especially if you haven't received your inheritance yet, and you can somehow preserve it for your own future.
Thank you for your concern.

Yes, we are renting and as of now I am not planning on buying another condo (at least not right away, as our lease goes until Oct. 1st, and probably not in the future).

Yes, I am getting advice from a capable, experienced Elder Care attorney about all aspects of our finances. Sadly, there really won't be enough money from the sale of the condo and sale of the land to really "need protecting". This goes back to my husband being impaired for so many years. Unfortunately, his "financial sense" was destroyed years before we realized this and it caused numerous errors in both our short term & long term financial planning.
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Old 03-19-2016, 05:51 AM
 
Location: Wisconsin
16,941 posts, read 17,243,367 times
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Quote:
Originally Posted by convextech View Post
I wish one of your children would move in with you and help out. I cannot imagine letting my mother take on all of this alone.

Just to clarify. Our adult daughter did move back home, from another state, at my request, about 18 months ago. She moved away from a city that she loved, a much better (but non-professional) job, many, many friends, a great social life and a very active, very fullfilling volunteer life. She gave up quite a bit to come home, as her life here is not very good (virtually no friends or social life, a crappy, crappy job, etc.). Our daughter helped out enormously while I was still working fulltime and was a real life saver when my husband was in the hospital & rehab, as she took over everything non-hospital/caregiver related (grocery shopping, cooking, laundry, cleaning, etc.).

Currently she is living at the condo and assisting in the downsizing. She also had full responsibility for my husband's dog until he was rehomed. She does help in many ways beyond that. Could she help more? Perhaps, yes. Should she help more? Well, that is a philosophical question.

Our son, lives 2,000 miles away and he & his spouse at a very crucial point of their careers. They also have a newborn baby and a toddler. Could he help more? Definitely, yes. Should he help more? Well, that is another philosophical question. If I asked him to come home for a week or two he would do it, but that would put quite a huge burden on his immediate family and could have long term effects on his life time career (both he and our DIL are currently right in the middle of extensive research/writing projects & are looking for tenure track University professorships and scientific research positions).


So, as you can see, I am sort of caught between a rock and a hard place.

Last edited by germaine2626; 03-19-2016 at 06:04 AM..
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Old 03-19-2016, 12:09 PM
 
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Yes, and as hard as it is, you seem to be doing a remarkable job of not letting the rock and hard place squash you. It's been quite a while now though, and hopefully will be finished soon. Expediency and not perfection is your friend. Best Wishes navigating this phase of it all!
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Old 03-19-2016, 02:53 PM
 
Location: Southwest Washington State
21,642 posts, read 14,239,850 times
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I agree with a previous poster that said some things simply will fall through the cracks. I would ask your daughter to pick up prescriptions though.

And, I want to urge you to visit your doctor for yourself. Arrange it however you have to, but please do so. I think you should tell the doctor you are tired, and you are over extended. Have him or her check you over well, to make sure you are completely OK now.

If you are continually feeling anxious, then a med might help short term with that; if you are low on iron, then you can add that. That is the sort of thing I am thinking of.

Insist that someone from your family sit with your DH while you visit the doc.

I sympathize with you and hope and pray you get through the worst of this OK.
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Old 03-20-2016, 09:04 AM
 
Location: Wisconsin
16,941 posts, read 17,243,367 times
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Default Update- March 20, 2016, Palm Sunday

Update- March 20, 2016
Happy Palm Sunday to everyone. (In case you were wondering, we go to church on Saturday nights.)

Some good news to share.
My brother is coming over today to watch my husband. Plus, he has arranged (and will pay for) two young men (my brother's paid helper/assistant/jack-of-all-trades/"Man Servant" & his friend) to help me all afternoon for as many hours as I need them (hmmm, maybe till April 1st?).

The plan is for them to move boxes & some large antiques from the basement & second floor of the condo to the basement storage area at my apartment. If you recall my previous post (134) I now have a huge, oversized storage area in the basement (you just have to avoid running into water pipes going through the middle of the area). Plus they will help me with some of the heavy work around the condo and other odd jobs. But, their main task is to carry heavy boxes & large items from the condo to the apartment.

These two young men have helped me twice before (also paid by my brother) last fall and they are very, very nice and very hard working. They are HS seniors.

I am expecting a long, tiring, busy but very productive day.
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