hi Karen,

The reality of people trailing off after stroke is unfortunately a very common thing. We all have different views as to why, not wanting to get involved with helping, don't know what to do there could be so many reasons. As to your comment about the magic 3-6 month mark, there isn't a magic mark. Recovery takes time and sometime that can take can take months to years. Thing happen at a snails pace and becoming overly stressed about the 'what if's' only tend to make it feel like forever, What your family and friends suggest is just that.  They truly don't know and understand and all you have to do is politely say to them;' Thank you for suggesting that. I'll consider it' You're not rude and being un truthful. I would consider finding a local stroke group where you are as well as the great one we have here and talk to other caregivers and get new ideas for coping.

Sometimes the basic rule of thumb we've learned as survivors is that the first year is the hardest for survivors and caregivers. His brain went through a terrible ordeal. It needs time as well as get the swelling back to normal.

There are great caregivers here that can better fill you in for the operations of day to day and getting you started with filing for SSDI and Medicare.   

You aren't wrong in your feelings. Your human and you can't change what was. For his happiness, I'd consider talking to a therapist who knows and understands Stroke or TBI and can help him along with this new life.

Sending positive blessings to you . xxoo

Karen: first off - welcome to the wonderful world of blogging. The one thing you will have, down the road, is a journal as to your husband's recovery and also your journey along this stroke recovery road.

You must file for SSDI. I can not help you with that. Bruce's was done by his work. But there are many here who can help you with that.

The first year is a bear. I was on the roof, ready to jump off, at nine months post when I found this wonderful group. HostSue and others talked me down and somehow, I can get through every day.

We all live with fear and somehow, I promise, it does fade a bit - never goes away, but not always right in your face. I think people fall back when they realize just how long this recovery takes. They have to get back to their own lives. But I still have my go-to's and I try to keep my requests at a minimum. But when I need help, I always ask. That is hard to do, but you must learn to speak out if you need help. Even if it is as simple as come sit with him an hour so I can take a walk or a long, hot shower with some grooming.

You absolutely must get your budget in order. What does it take to manage your home and lives? Then you look with a critical eye as to what can be cut out - cell phones, upgraded cable, credit cards with annual fees - etc. Bruce took care of all the finances here pre-stroke, so that way certainly eye-opening for me. After about year two, he now helps with paying the bills and can balance the checkbook. Any major financial decisions I make, I always run by him. Of course, the decision is always mine, in the end. But he likes being kept involved. He opens the mail, does the dishes, folds laundry - one handed. Sets the table, helps prepare meals. Yes, all of this is more work for me - but he loves being involved in just the daily doings in his own home.

You may want to consider a pet - an older, docile cat for instance. And yes, as Kelli suggests - check with his Neuro if he is not on an antidepressant.

Truly honey, it is never a "just". With any decision you have to make, there are so many issues that have to be weighed. The trick, for me anyway, is to deal with one major issue at a time. I may have many irons in the fire at any one time, but when it comes to crunch time, one issue. Once his safety was assured in the home, the next is how are you going to live.

Know that there is probably someone here who can help with specific issues. Reach out on the Message Board about SSDI to start.

Hugs and hang in there. Debbie

Hi, Karen. You are about the age of my oldest kid so there is quite a bit of age difference between us. However, in other ways we are quite similar in that my spouse, too, had a stroke 11 months ago and our lives have been forever changed. With that said, let me add that our lives remain quite good and we are perhaps closer than we've ever been. Oddly enough, a medical crisis such as this can be strengthening to the people caught up in it. It's like that old Chinese (I think) proverb that says, "What doesn't kill me will surely make me strong."

You didn't give many specifics about your husband's stroke nor the degree to which he remains injured. These things vary quite a bit but they are remarkably similar in that no one knows for sure how fully the stricken person will recover and how much recovery there will be. Worse, the closer you are to the person the harder it is to see the gains, especially once the giants steps have ended and only baby steps continue. While it is true that recovery tends to slow after six months or a year, it does continue. It's just that as you watch your husband so closely and continuously you often can't see the progress when it becomes more subtle. But keep watching and looking. You'll almost always find it. Remember, you are watching a movie, not a snapshot, so change is harder to spot. You might try asking people who see your husband less frequently if they notice any changes. Usually they do.

I think it is hard for your friends and even relatives to get their minds around this. It's all just too overwhelming, too awful, too frightening. They want to be helpful but they don't know how. They in fact feel helpless. So they wind up avoiding you or even running away. This, I'm afraid, is simply human nature. Besides, even if they were able to help they would be hard pressed to find the time at their busy stage of life.

My wife and I probably have experienced less of this because we are older and so are most of our friends. All of us have begun experiencing health issues and the like so we find it easier to accept and understand them. Out kids are grown and most of us have retired. Thanks to Medicare we generally don't have insurance problems. I think something like a stroke is much harder on younger folks, at least mentally if not financially. Then again, when you've been married for more than 48 years you tend to get very attached so when something like this hits you it probably hits harder in many way at this stage of life.

But even for us geezers, some of what you are experiencing applies. We've also had friends fade, for example, and it's both disappointing and annoying. Our three adult kids are successful and affluent and they've been of marvelous assistance on a number of levels but even with they often don't quite understand what we're going through and what we need. If we ask, they always come running but, face it, no one really wants to ask.

I think, Karen, that what you have to accept is that the only help you can truly count on is what you provide for yourself and your stricken spouse. That may sound overwhelming right now but know with certainty that you aren't alone and that others have followed the path you are now taking and have managed not only to survive but to often thrive. What's more, since you were smart enough and aggressive enough to find and use this forum, you are almost certainly up to the tasks at hand. You may not have a degree and you may have relied on your husband to do the heavy lifting with money management and the like but that in no way means you can't do what needs to be done.

I agree that you should start by getting a firm grip on your finances. Know what you owe and to whom and do whatever rebalancing you can do. On the income side, try to get Social Security disability benefits, which would essentially pay your husband as much now as he would have gotten were he at full retirement age. After a couple of years he would even be eligible for Medicare, which is excellent insurance. To get Social Security disability benfits you probably should contact one of the many lawyers scattered throughout the country who do nothing but that kind of work. These men and women get their pay from whatever back payments you get.If you get nothing, they get nothing.  I'm sure there are some of these lawyers in your part of the country so do a little Googling to locate one. They don't even have to be anywhere near you since they work in the federal rather than the state arena. Just be sure to check out the lawyer you select to be sure he or she is reputable and well qualified. 

Since I don't know the extent of your husband's injuries I don't know if it is possible for you to work at least part-time but if you can you should. You'll need all the income you can get. Also, if you start bringing home a paycheck you'll feel less helpless, meaning more in control. 

Let me add that with the friends and relatives that haven't run away you should be open with them about what you need. You might be surprised by the willingness of folks to help once you ask them for help. Most people are fundamentally good and decent.

Karen, I'm sure everything looks dark and gloomy right now but it is almost certain to look better as you march on. I'm not sure why your early expectations for your husband's recovery were so high but there's a good chance you simply didn't get the right kind of information. So you can start getting better information from here on. This forum is an excellent resource for that.

Six months ago I thought my wife would never be able to do the things she now does. I know everyone is different but I also know that the human brain and body often heal far better than we expect. So whatever you do, don't give up hope. There is always hope.

I hope you'll continue to come to this forum and express your feelings openly, honestly and without shame or fear. Many of us are in the same situation that you are in and we understand. You won't see us fading, that's for sure.

Good luck, Karen. I look forward to getting to know more about you in the days, weeks and months to come.

Ron

Hi Karen, I took a minute to see if there were any posts in the forum or info in your profile about your husband's disabilities, which would make it easier to be on the same page.    I didn't really find anything that tells me what he is left with, so I'll have to wing it.    I don't know if he is anything like the shape of my husband, so let me instead, share the experience of my next door neighbor, who had a stroke 2 months before my husband!    He was in 'pretty good' shape, and talked about going to work non-stop.   Finally, I got him to listen to me and told him, that he should apply for Soc Sec Disability NOW.    You have to be disabled 6 months for them to grant it - but we applied around 5 months and it went thru on the 6 months, so we didn't lose any payments.    Here's the thing I told him - if the time comes and you don't need it, you can reject it - BUT, if you are still in the place where you find you can't go back to work, it will have started - because it will only pay from the date you applied, not the date you became disabled.     Although he made major strides, neighbor was not able to go back to work, because of 3 problems, which stood in the way.    I'll stop that story there, because it's his story, and the point was, apply right away and get the DATE OF APPLICATION down.   You can start online.    Oh, I made a list of every single thing that he had a problem with, and made sure all his doctors had the list and we discussed most of it.   So when the doctors are contacted by SocSec, the doctors know what the issues are.   Too many people just haul them into the doctor and think it is evident.   IT'S NOT.   Only the one living with them knows all the things they can't do.  

http://socialsecurity.gov/disabilityfacts/

Please can you tell more of what his problems are, so we can help you more with what to do next?

Now about the JUST part, oh man, if people only knew how much they hurt with that crap.   When my husband was just home from the hospital and someone from work was talking to me about our benefits, I was referring to the accounts and asked her what she thought I should do about them - she misunderstood and gave me her 'what she thought I should do about it all' answer.   She said, "get a job.   hire someone to take care of him".    REALLY?   My hubby was one step up from a vegetable and this may not be the retirement we dreamed of, but it is the one we have, and I'm NOT handing it off to someone ELSE to spend his last years with him!   Not to mention my pay wouldn't even cover what it would take to pay someone else, and not to mention that we are lucky to have disability from work, also, and they would have taken any income right off the disability they gave us.

I was hardly away from him the first year, he was so bad off.    I would make my Walmart run while he napped, although generally, I napped when he did, so exhausted, BOTH of us.  

I turned my facebook page into where all the updates on him go, and found all his family, friends, work friends.    Now I can update anything new about him, without having to do it personally with EACH person.

He still has lots of problems, BUT, he is more like himself in character, which returns him as my friend and companion.

Hi Karen,  welcome to the best group of people, who  do not judge you, and will answer your questions with love and concerns.   The caregivers on here, have been there, and know what it is your are going through.  I had a stroke, and know that the first year is the hardest.  The brain takes about six months to stop swelling and start rewiring.  Plus stroke recovery is not a sprint. it takes time.   Family and friends, don't know what to say and they do not know what it is like, so they say things without knowing what is going on. 

Please start applying for SSDI, there is an office in every  state,  there is a help line, and   they will send you info.   

Keep blogging,  it will help you and later on you can see where you was, and see how things have moved on.   let us know how it is going, baby steps my dear, one day at a time.

Yvonne

hi Karen :

welcome to wonderful & therapeutic world of blogging. Stroke affects whole family & it is very frightening for every one involved in it. since it puts all out of our comfort zone & make us uncomfortable. though when we step out of comfort zone that's when growth occurs. BTW don't make mistake of looking too far in future & afraid to do any decision. Any decision done with right intention behind it will turn out to be good one.  I stroked at age 34 which left me paralyzed on my left side & retired me from the job I loved. I never thought I would find joy in living again, but thanks to support of my friends & family & this site I found my joy again. I hanged on dearly on hubby's strength till I found my own inner strength. When I felt like I was drowning in my own despair, hubbys words comforted me, he was like just keep your head above water, tide will change. & he was so right, nothing stays forever good times & bad times both change. just hang in there & do one thing at a time first get organized & file for SSDI. I used to hate when people say just take one day at a time now I understand that statement & will tell you same thing, just take one day at a time, sometime it's just one moment at a time. Don't look back that creates depression, don't look too far in future that creates anxiety, just stay in present & handle one small thing at a time. getting organized will pay big dividends.

Asha

Hi Karen,

Welcome to the best stroke/caregiver support online.  I am so glad you were able to find this site and hope that you will continue to blog and maybe even get a chance to join the caregiver chat on Tuesday evenings - 8 p.m. EST.  You will find a lot of support here.   I found this site within a month or so after my husband had a massive brainstem stroke in June 2004, and have been coming here off and on for over ten years now..........wouldn't have survived without the support from all the wonderful people here on this site.   You have already been given some good advice here, so there isn't much more I can add except to say that you have to take some time for yourself, or you can't take care of your spouse.  I know that is easier said than done, as I have been through numerous caregivers before I finally found one that I really trust to leave my husband with and get away for a few hours at a time for myself.  

Please continue to update us on yours and your husband's progress.

Sarah