# Life just got hard



## Patri (Apr 25, 2015)

This is not what I hoped 2015 would be. BIL, at age 58, was diagnosed with early dementia. My dad went into a nursing home earlier this month. Now what to do with mom? Both are 87. We siblings live across the country, and for the past year have stepped up visits to care for them. I am POA. I am supposed to fly out to them in 2 weeks.
Less than 24 hours ago, DH, 60, suffered a major stroke and was air-lifted to a trauma center. Our children and spouses live within a few hours of us, and all were able to get to the hospital. 
Different thoughts are hitting me. I am a caregiver now, if he survives. One side is paralyzed. He is still bleeding. But there are positive signs too, in his responses to commands.
His income is gone for the present. Thank goodness my job carries the insurance. I'd like my old life back, without knowing exactly what the new one will bring.
I heard an owl when I woke in the dark of night, his whooing to my crying.


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## pittle (Apr 25, 2015)

I am so sorry that this is all happening in your family.  I just pray for you to have the strength to deal with all of this and that you can make all the right decisions while under such stress.


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## WinniWoman (Apr 25, 2015)

Very sorry for your troubles. It goes to show you you never know what life will bring while you are making other plans. Know that you are strong and will get through it all. There will be light, but for now you must attend to the issues at hand. You have probably had some beautiful times with your family. Think of those good things often and look forward to the many more to come in the future. This too will pass. Make sure you take care of yourself as well. Keep us posted.


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## taffy19 (Apr 25, 2015)

My heart goes out to you, Patri.  Your family has been hit so hard and now your husband too.  I wish you strength and you must take care of yourself too.

It is amazing what a hospital and rehab center can do for a stroke patient today.  There is hope for you and your husband.  Stay strong and have faith.


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## Talent312 (Apr 25, 2015)

Gosh!  I don't know what to say, except that, nothing in this life ever seems to turn out the way it's supposed to or how we expect, and yet somehow we have to carry on. 

Not to detract from your situation, but to show that none of us is immune from life throwing us curveballs -- By age 22, both my parents had died (cancer + suicide), at age 45, my now ex-wife of 20 years decided she was bored with me, later one of my brothers went to prison for drugs, and last year, I dialed 911 for the first time when my "new" wife had what turned out to be a mild-stroke.

Obviously, your focus must now be on your DH, so cancel your flight (you can rebook your tickets later), other family members will have to step up to the plate, and BIL will have to be his family's primary concern. Remember to take some time to look after yourself. It's easy to burn out from all the grief and stress -- so each day, set aside some time for yourself, even if it's only an hour. You can only do so much.

BTW, we have an owl who visits our backyard and hoots for no apparent reason.
The other day it watched us, as if thinking, "What are you doing in my backyard."
.


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## MULTIZ321 (Apr 25, 2015)

Hi Patri.

My heart goes out to you and your family. I know this seems overwhelming now and it will tap inner strength you did not know you have. 

It sounds like your husband has Aphasia. There are many types depending on what part of his brain was affected by the CVA. If it hasn't happened already, ask the hospital to get a Speech Therapist involved in his care.

Your Tugger friends are here to support you.

All the Best.

Richard


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## vacationhopeful (Apr 25, 2015)

Patri,

My heart goes out to you .. many of those "incidents" have happen within my family in the last 10 years. But the stroke your DH is going thru is something that effects you to the bone. 

My prayers are with you and your family ... just take it one (day, hour, minute) at a time. Do not give up on faith ... 

Linda


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## Passepartout (Apr 25, 2015)

Patri,
I sit here with tears rolling down my cheeks. I shared your post with my DW. You are in our hearts. It shows just how fleeting good health is. I wish I could give you a real hug, but a TUG hug {{{HUG}}} will have to suffice for now.

Your last line shows that you have inner strength, and the ability to take this challenge one step at a time. In the whole it can seem like too high a mountain to climb, but one step at a time will get you through it.

We'll keep you and your husband in our thoughts, and hope for a speedy recovery. It was good that his stroke was diagnosed quickly and that he's getting expert care. Speedy application of clot busting meds seem to be able to mediate and reduce the damage from stroke. You are needed there at his side.

I hope your siblings can jump in and help with the decisions that will need to be made concerning 'Mom'. It is too much for you to handle right now on your own. Reach out to them- and your kids, too.

Be strong! {{{Another hug}}}

Jim


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## Paumavista (Apr 25, 2015)

*Prayers for peace, calm and healing*



mpumilia said:


> Very sorry for your troubles. It goes to show you you never know what life will bring while you are making other plans. Know that you are strong and will get through it all. There will be light, but for now you must attend to the issues at hand. You have probably had some beautiful times with your family. Think of those good things often and look forward to the many more to come in the future. This too will pass. Make sure you take care of yourself as well. Keep us posted.



Life does have a way of throwing come curve balls......last year was my "bad" year (I am counting on that!) - praising every single day this new year!  

Hopefully this time will past quickly and your life will speed along to good times.

Judy


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## Dori (Apr 25, 2015)

My heart goes out to you and your family. know that your friends here on TUG are thinking of you.

Dori


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## rickandcindy23 (Apr 25, 2015)

You are experiencing what we all worry will someday happen with our loved ones (or ourselves).  My heart aches for you, Patri.  I will include you in my prayers.  You need strength right now to do what you must.  As some others have said, be sure to take care of yourself.


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## VacationForever (Apr 25, 2015)

My heart goes out to you.  For now your focus is your DH.  Depending on how well he recovers, if he needs care then having a caregiver (through an agency - I cannot emphasize enough) at least for some hours or some days will help provide respite to you.  Does he have long term care insurance?  If so, it will pay for caregiving services when he leaves hospital and rehab.

Regarding your parents, you can step down as a POA if you have another sibling that you believe can make good decisions for them and is willing to be a POA.  Or you can appointment an interim POA for them.  When dust settles, a good option is to move your parents closer to where you live.  Don't forget to also look for some home care for your mother.

Unfortunately with your BIL, early onset of dementia usually means that progression of the disease will be fast.


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## swditz (Apr 25, 2015)

It is amazing what a hospital and rehab center can do for a stroke patient today.  There is hope for you and your husband.  Stay strong and have faith.[/QUOTE]


this is absolutely true. The strides stroke health care has taken over the last decade are amazing.

I am very sorry for your circumstances and we will certainly keep you in our prayers.

scott


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## silentg (Apr 25, 2015)

Hello Patri,
We always are planning ahead, being timeshare owners, and then unexpected illness jumps in and changes everything. I am sorry that your husband has fallen ill at the same time as other family members.  My thoughts are with you and your family. Let us know how you and family are doing, TUG friends care about each other!
TerryC


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## pedro47 (Apr 25, 2015)

My heart goes out for you. I know the feeling because we are caring for my mother-in-law, two (2) aunts all are in their ninety's. Plus one niece who is only 58 years old.

My prayers are with you and your family.


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## Karen G (Apr 25, 2015)

So sorry for all the challenges you are facing. Praying for your family.


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## Jestjoan (Apr 25, 2015)

Praying for a good outcome for your DH.

http://www.strokeassociation.org/STROKEORG/ 
http://www.stroke.org/  Lots of resources.

My sister's blog about her stroke. https://wellnessrebates.com/life-after-trauma-a-new-series/


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## Tia (Apr 25, 2015)

Oh my so very sad to read how hard life has just become for you , your husband and your family. I pray you find strength to be able to deal with what is to come and your family can support you where you need it most. 

Talent had some wise words to focus on your husband and to take time for yourself. 

My dad had a hemorrhagic stroke 8 years ago,  a neuro surgeon offered surgery but nothing was going to come back that was lost. He had a living will and my Mom followed it. Tough choices we are never really prepared for. 





Patri said:


> This is not what I hoped 2015 would be. BIL, at age 58, was diagnosed with early dementia. My dad went into a nursing home earlier this month. Now what to do with mom? Both are 87. We siblings live across the country, and for the past year have stepped up visits to care for them. I am POA. I am supposed to fly out to them in 2 weeks.
> Less than 24 hours ago, DH, 60, suffered a major stroke and was air-lifted to a trauma center. Our children and spouses live within a few hours of us, and all were able to get to the hospital.
> Different thoughts are hitting me. I am a caregiver now, if he survives. One side is paralyzed. He is still bleeding. But there are positive signs too, in his responses to commands.
> His income is gone for the present. Thank goodness my job carries the insurance. I'd like my old life back, without knowing exactly what the new one will bring.
> I heard an owl when I woke in the dark of night, his whooing to my crying.


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## susieq (Apr 25, 2015)

Dear Patri, I am so sorry for what you are going through........... Prayers for you and yours, for improving health and strength to weather this storm. As others have said, please take care of yourself, you need to call on whatever inner resolve you have to deal with what's on your plate. Learn to prioritize and delegate ~ one person can only do so much. Take one day at a time, and please, let us know how you're doing............. We care......


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## LisaH (Apr 25, 2015)

When it rain it pours. So sorry for what's happening in your life. Wish for the best outcome for your hubby.


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## Pat H (Apr 25, 2015)

Oh, I am so sorry. I hope that your husband recovers significantly. Does his employer provide short/long term disability? If he will not be able to return to work, he should apply for SS disability as soon as possible. You do not need to wait. 

It's important that you take care of yourself.


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## suzanne (Apr 25, 2015)

Thoughts and prayers are with you and your family. Sometimes life just plain sucks.

Suzanne


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## Sandy (Apr 25, 2015)

I am also praying for you and your family. 

I have a similar health situation with my DH (blind; diabetic; dialysis).My 92 yr old mom lives hundreds of miles away from me in PA and my brother lives in MN. These life events can cause so much stress. Being a caregiver is not fun.

But as you know, and caring folks will tell you, you must take care of yourself.

We try to go places where we can drive so that my DH can get dialysis. I fly my Mom to join us at out timesharing adventures. As long as both of them can come it is great. These trips are times when our small family is able to get together, several times a year.  If vacations are important to your family, timesharing can work even for short trips close to home. 

Please take care and know that we are praying for your strength and health too.


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## stmartinfan (Apr 25, 2015)

So sorry to hear about all that is happening with your family right now.  Be sure to take care of yourself, and forgive yourself when things go wrong, knowing that's likely to happen.  You are doing your best, but there's only so much you can control.   It was interesting to read some of the ideas others shared, such as the temporary POA, as ways to lighten your burden right now.


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## puppymommo (Apr 25, 2015)

I am so sorry you are going through all this. Taking care of elderly parents, especially at a distance, is hard.  And how heartbreaking to have such devastating illnesses on 2 such young men (only 58 and 60). 

May you find ways to take care of yourself in the midst of caring for others.

Thoughts and prayers.


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## Fern Modena (Apr 25, 2015)

We're all thinking about you and hoping for good outcomes. What can you do? Put one foot in front of the other and keep moving forward. Know that sometimes things aren't what they seem, and they do get better. Learn that "normal" includes "new normal" and is different for each person.

Encourage your husband in every little way you can. Know that there is a ways to go in this journey before things are stable and there is much improvement that can happen.

Unless he is a TV fanatic, while you visit, turn the TV off. Use Pandora from a cell or a computer with his favorite type of music as a background instead. Talk to him, even if he can't talk back. Even if you aren't sure he can hear (because he can). Read local news from the computer to him, or entertainment news and gossip if he likes that. Or sports news. Or "odd news" from Yahoo.  All of these things are great to keep his brain active when you run out of things to talk about. Reminisce about "the old days," etc. 

Don't think you have to do everything. Many of the things you thought were important or necessary in your life really aren't. You can get somebody else to clean your house from time to time. You can get a child or a handyman to do chores. Don't sweat the small stuff.

Make sure that you give yourself at least a small bit of "me" time. It is hard to say and even harder to do, but try to do it, even if it is only to take a nap, get a manicure or a massage, etc.

You are stronger than you know. You're a woman. You birthed babies, didn't you?  Draw from that inner strength. And when nobody's around, if you need to, cry in the shower. Its OK, really it is. 

((( HUGS }}}

Fern


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## Big Matt (Apr 25, 2015)

Hang in there.  Your husband is in for a long recovery, but if things go well now he should be able to be pretty functional.  My best friend had a real bad stroke and it took months to recover.  He has little use of his left hand, but that's not a bad trade off considering the alternative.  My friend was just like your husband for the first week, but then things started getting better.  Keep a positive attitude if you can.  He's probably terrified and needs you to be strong.


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## Fern Modena (Apr 25, 2015)

I just thought of something silly. Real silly, but not really. Have somebody go to a large pharmacy or medical supply house and pick up a bottle (white plastic with blue print on it) of no rinse shampoo if dh still has hair. If you haven't been there, you have no idea what a morale booster it is to have clean hair. It is lanolin based, and you rub it in, massage the scalp, and then just towel dry and comb the hair normally. Makes a world of difference in the sick person's outlook.

Fern


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## Timeshare Von (Apr 25, 2015)

Hang in there and be sure to make time to take care of yourself too.  Life is so fragile and it's at times like these that you realize it.

I'm sorry you are going through so much and will pray for added strength for you and your loved ones.


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## easyrider (Apr 25, 2015)

Patri said:


> This is not what I hoped 2015 would be. BIL, at age 58, was diagnosed with early dementia. My dad went into a nursing home earlier this month. Now what to do with mom? Both are 87. We siblings live across the country, and for the past year have stepped up visits to care for them. I am POA. I am supposed to fly out to them in 2 weeks.
> Less than 24 hours ago, DH, 60, suffered a major stroke and was air-lifted to a trauma center. Our children and spouses live within a few hours of us, and all were able to get to the hospital.
> Different thoughts are hitting me. I am a caregiver now, if he survives. One side is paralyzed. He is still bleeding. But there are positive signs too, in his responses to commands.
> His income is gone for the present. Thank goodness my job carries the insurance. I'd like my old life back, without knowing exactly what the new one will bring.
> I heard an owl when I woke in the dark of night, his whooing to my crying.



Wow, I bet your thoughts are hard hitting right now. You probably already know this but remember to keep your well being in mind. If possible, delegate some of the responsibilities to others. We hope things get better and have you in our prayers.

Bill


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## KauaiMark (Apr 25, 2015)

Ohhh, damn.  

We've been through much the same some years ago.

We all know how helpless and depressed you may be feeling right now but it will diminish over time.

Praying for you.

..Mark


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## Nancy (Apr 25, 2015)

Hugs.  Hugs.  Hugs.


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## falmouth3 (Apr 25, 2015)

I'm so sorry to read of all the things you're dealing with right now.  Deal with your husband, first and foremost.  Do what you can and let everything else slide.  Wishing you and your family the very best!

Sue


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## Zac495 (Apr 25, 2015)

Oh Patri,
My heart is aching for you. 60 - he's a baby. This is way too much. You need to concentrate on him right now - your family needs to help with Mom. Oh my gosh. Patri, please know my thoughts and prayers are with you. Life is so unfair.
Love,
Ellen


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## bjones9942 (Apr 25, 2015)

My condolences to you and yours during this very stressful time!


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## amycurl (Apr 25, 2015)

Big hugs and heaps of vibes headed your way. Holding you and all of your family in The Light, and I echo others when I say--you can only care for others when you take care of yourself, too.


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## mrsstats (Apr 25, 2015)

Prayers for you and your family.


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## Patri (Apr 25, 2015)

Thank you everyone. These comments mean so much. And there are good ideas I would not have thought of. I will go back and reread when the time is right.
He was more alert today. The neurologist is very encouraging. DH had a hemorrhagic stroke and the bleeding has stopped. Probably Monday is the critical deadline for things not to turn for the worse. Then they think he could make a pretty good recovery, after weeks in acute rehab and months in outpatient rehab. 
Our kids and spouses have been surprising. Really stepping up as adults. Some are in a hotel for the weekend. Staying most of the day with him. I have to go home each night. I need my own bed and some ordinary. The kids organized who would return each day this week. It is a hardship for them in the sense of taking off work and driving a ways, but they are determined.
I plan to continue commuting, with kids or friends. Many ask what they can do to help. I am asking someone to ride with me each day, since it is 90 minutes or more to the hospital, and they are glad to do that.
He will be at the trauma center through next weekend, probably. Then I will try to get him in a rehab hospital about 15 minutes from here. Already people who know us are alerting that staff to admit him, when the first hospital has not even made the call!
Continued prayers are appreciated. You are all wonderful.


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## Karen G (Apr 26, 2015)

I'll continue to pray for you, your husband, and family. Thanks for posting the positive things that are happening! May there be lots more positives to come!


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## MuranoJo (Apr 26, 2015)

Wow, how overwhelming this must all seem.  I can't add anything to all the great comments you've received so far--just know we all care and will be thinking of you.  And good news about DH and the support from the family today!


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## vacationhopeful (Apr 26, 2015)

My heating contractor (and high school class member) had a stroke around age 60 ... his BF was called by the bimbo GF and he immediately called 911 seconds after walking into his house. I visited him in the brain unit in a major Philadelphia hospital 12 days after ... ambulance took him to our local ER (not a trauma unit but the cuts & scrape kind) who within 5 minutes did give him that "SHOT" and threw him back into his original ambulance for the trip to Philly and the level 5 unit. I believe the local ER did that with just a phone consult ... 

Today, 2.5+ years later, it would be hard to know the level of injury he had ... he is back to being at work riding along, lives alone, and flirts with all the waitresses in the local diner. But he did remove a LOT of stress from his life, down sized his bills, move to his smaller house and his son & wife took over the larger house (and yard maintenance) .. both houses are one the same lot. He does NOT own the business - it is his son's problem now and is on Social Security. 

His clot buster shot was not yet approved at that time (in trials) ... but from the visit to the hospital to NOW ... what a change. I figured 10 days after the stroke hit would be what he would have most likely be left with ... old school & older friends experience .... NOT AT ALL .... today most people would NOT KNOW he had a major stroke.

PS The "study" paid over $400,000 of his medical bills for being in the trial.


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## e.bram (Apr 26, 2015)

There, but for the grace of GOD, go all of us!


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## mclyne (Apr 26, 2015)

I am so sorry that you have to deal with all these issues at the same time.

There is help for you in all areas. The hospital has specially trained personnel who can assist  you in obtaining the help you need as well as determining what you are entitled to, insurance wise. Every hospital has Social Workers equipped to handle these situations. I strongly suggest you call the hospital and request a meeting with one.

I will keep you in my prayers.

Please let us know how you are making out. We all care.


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## susieq (Apr 26, 2015)

Patri, such good news this morning about DH. Will continue to pray for even more. Reading vacationhopefuls response was very encouraging too. One day at a time.........



vacationhopeful said:


> ...Today, 2.5+ years later, it would be hard to know the level of injury he had ... he is back to being at work riding along, lives alone, and flirts with all the waitresses in the local diner. But he did remove a LOT of stress from his life, down sized his bills, move to his smaller house and his son & wife took over the larger house (and yard maintenance) .. both houses are one the same lot. He does NOT own the business - it is his son's problem now and is on Social Security.
> 
> His clot buster shot was not yet approved at that time (in trials) ... but from the visit to the hospital to NOW ... what a change. I figured 10 days after the stroke hit would be what he would have most likely be left with ... old school & older friends experience .... NOT AT ALL .... today most people would NOT KNOW he had a major stroke.
> 
> PS The "study" paid over $400,000 of his medical bills for being in the trial.




Patience .... I know.... that's the hard part ...............


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## LAX Mom (Apr 26, 2015)

Thinking of you and sending lots of positive thoughts & prayers on your behalf. You seem like a strong woman with wonderful support from family and friends. Best wishes to you & your family as you deal with these difficult struggles. None of us know what lies ahead for us. Stay strong.


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## BevL (Apr 26, 2015)

It's a dark and scary place you're in right now frankly.  Sometimes the dark is a little less scary with company, and we're all here with you.

I won't give any advice because you are the expert on you and what you can and should and can't and shouldn't do.  Instincts are there for a reason.

Bev


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## Patri (Apr 28, 2015)

DH was moved into the neuro wing this afternoon. Definite improvements each day. I have not seen a social worker yet. I guess not until they are ready to discharge him to rehab hospital. Hope that is this weekend.
So many people offering help. Only need now is mowing the lawn, but no one nearby to do that. Few neighbors know about DH yet. I haven't been here to tell them.
A very nice thing - boss said to take whole week off without using vacation time. A son's boss told him the same thing.


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## Passepartout (Apr 28, 2015)

My experience while being my mom's responsible party after she stroked was that the hospital would say like, "They're being released in an hour. Find a bed." So You might visit some rehab places in your area. They also have placement people to help. Alert them that your DH is approaching discharge. Forewarned is forearmed.

You might find a bulletin board at your market with lawn guys ads? Or maybe a neighbor can recommend one? 

Happy to hear of his progress. It's a long road to go down, but we're here with you. More {{{TUG HUGS}}} headed your way.

Jim


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## GrayFal (Apr 28, 2015)

Patri said:


> DH was moved into the neuro wing this afternoon. Definite improvements each day. I have not seen a social worker yet. I guess not until they are ready to discharge him to rehab hospital. Hope that is this weekend.
> So many people offering help. Only need now is mowing the lawn, but no one nearby to do that. Few neighbors know about DH yet. I haven't been here to tell them.
> A very nice thing - boss said to take whole week off without using vacation time. A son's boss told him the same thing.



So glad he is progressing along and you are getting the support you need.

Seek out the discharge planner on his floor and tell them where YOU want him to go for sub acute stay. It is important to get that information to them early on so they don't start the ball rolling to transfer him to their "usual" place. Not that this would be bad but if you have a specific facility in mind let them know. They can let you know if it is appropriate for the level of care he will need. 

Keeping you in my thoughts and prayers.


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## Janette (Apr 30, 2015)

Take care of yourself! You can't help anyone if you are not healthy. You have enough on you to break your back, but there is help and the sun comes up tomorrow. I'm so glad you have family to help. My prayers go up for all of you. So many of us are at this stage of life. I pray for healing, peace, and rest.


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## Patri (May 2, 2015)

DH was moved to an acute rehab center today. It was our first choice and only 15 minutes away. Now life gets hard for him!!! Three hours of therapy a day, spread out of course. Nurse said it would wear him out.


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## GrayFal (May 2, 2015)

Patri said:


> DH was moved to an acute rehab center today. It was our first choice and only 15 minutes away. Now life gets hard for him!!! Three hours of therapy a day, spread out of course. Nurse said it would wear him out.



Great news, so close to home. 
now take care of yourself.


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## taffy19 (May 2, 2015)

Patri said:


> DH was moved to an acute rehab center today. It was our first choice and only 15 minutes away. Now life gets hard for him!!! Three hours of therapy a day, spread out of course. Nurse said it would wear him out.


Happy for you, Patri.  You will see how much he will improve doing the therapy.  Your husband is quite young so that is even better.  He will be tired and they will give him exercises too to do at home.


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## susieq (May 2, 2015)

Patri said:


> DH was moved to an acute rehab center today. It was our first choice and only 15 minutes away. Now life gets hard for him!!! Three hours of therapy a day, spread out of course. Nurse said it would wear him out.



So happy for you!! Maybe you can both relax a little and concentrate on getting back to "normal". Just take care of yourselves ... one day at a time.


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## jackio (May 2, 2015)

Glad to hear this news.  Wishing you the best.


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## dsmrp (May 2, 2015)

Just saw this thread. So sorry.
Glad to hear of your DH's on-going improvement
Just take it one day at a time.
Take care.


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## vacationhopeful (May 3, 2015)

Good .. rehab will be more restful (quieter for sleep) than an acute care unit for you & your husband. He will have good days and some down days ... but let him adjust to the routine .. usually, it is a M-F insane schedule of rehab, lighter on Sat and just a little rehab on Sunday (a day of rest and family visits). 

They have a routine - it works - try to get back to YOUR routine and sleep schedule. You (and the family), will be very busy when he comes home ... he will bitch and carry on about COMING HOME NOW ... resist and let him get accustomed to having to WORK his exercises ... this is way more important for his future (and yours!).

And if you feel you have to cry or wonder if this is as good as he get .... leave. He has his own (VERY BIG) doubts .. YOU are his strength. Don't coddle HIM ... tell him he can and MUST do it ... he is doing it for YOU as well as himself. You want him home and you need him ... but he has to be a partner, not your patient. And always tell him ... he can do it, the staff knows he can do it ... to man up and at least try & then try again.


PS I was driving by my heater contractor's favorite diner on Friday night - saw his work van there ... thought of you and your husband ... and said a prayer for both of your well beings. And hope next Spring, you all will be enjoying a Friday night dinner at your diner.


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## Kay H (May 3, 2015)

Today is my 1st day on tug for several days and I am so sorry to read your post.
I will pray for both you and your hubby for the long road ahead. You have gotten lots of advise re taking care of yourself.  These will be difficult times for both of you.


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## Pat H (May 3, 2015)

Great that he will be close to home. I'm sure that he will improve a little each day. Keeping you both in my thoughts.


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## Patri (Jun 11, 2015)

*Another update*

DH moved to a nursing home today for the next phase of rehabilitation. He got 41 days in the hospital acute rehab, because the insurance company allowed two extensions. The medical staff said that was almost unheard of, and we were thrilled.
He will start therapy tomorrow and is very motivated. He has a leg brace and can walk along a wall holding the rail. People right there to stop any fall, of course. His speech is very good. Sometimes he has to search for a word, but usually no one has trouble understanding him. He can lift his arm with effort.
He has a long way to go for mobility and fine motor skills. He would not be able to tend to his personal needs at home yet. But we are very optimistic. He has a good attitude, but I can see the nursing home could get depressing because permanent residents are there too.
We have all adapted to this new life. The community has been very caring. His employer is in the process of hiring his replacement. We know they can't wait until he fully recovers.
The application is in for SSDI. We have a long-term disability policy, but no short term coverage. Not a problem, because the medical bills have not been coming in yet! We have savings and will be fine in the gap.
So life is good in its own way now.


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## WinniWoman (Jun 12, 2015)

Glad all the prayers are working! Very good news! Hang tight. Everything is going to be alright.


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## Fern Modena (Jun 12, 2015)

Happy to hear that you recognize that this is your "new normal." Hopefully it will morph into a better "new normal" as time goes by.

Your husband sounds motivated. And with motivation, he will be able to come a long way. 

To stave off the boredom, bring him movies (a cheap video player might help). You can get them for a couple dollars at Wally World if you don't have enough. Talking books are good, too. And don't forget little goodies like homemade cookies (use slice and bake if time is an issue. They will still be homemade and show the love in them). 

When Jerry was in the hospital for weeks on end, he didn't like the food much. But he did love Strawberry milkshakes. So every day I brought him one. A real milkshake, not some of that extruded stuff. If there is anything special your dh likes, it could be "your thing."

Take a little time for you, too, or you'll burn out. Have another family member visit, and go get your hair done/cut, go out to lunch or dinner with family or a friend. You need a little "me time." 

If you haven't, you might want to start a blog. They are easy, and also an easy way to keep all your family/friends/former coworkers up to date.

Take care,
Fern



Patri said:


> DH moved to a nursing home today for the next phase of rehabilitation. He got 41 days in the hospital acute rehab, because the insurance company allowed two extensions. The medical staff said that was almost unheard of, and we were thrilled.
> He will start therapy tomorrow and is very motivated. He has a leg brace and can walk along a wall holding the rail. People right there to stop any fall, of course. His speech is very good. Sometimes he has to search for a word, but usually no one has trouble understanding him. He can lift his arm with effort.
> He has a long way to go for mobility and fine motor skills. He would not be able to tend to his personal needs at home yet. But we are very optimistic. He has a good attitude, but I can see the nursing home could get depressing because permanent residents are there too.
> We have all adapted to this new life. The community has been very caring. His employer is in the process of hiring his replacement. We know they can't wait until he fully recovers.
> ...


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## falmouth3 (Jun 12, 2015)

Fern Modena said:


> When Jerry was in the hospital for weeks on end, he didn't like the food much. But he did love Strawberry milkshakes. So every day I brought him one. A real milkshake, not some of that extruded stuff. If there is anything special your dh likes, it could be "your thing."
> 
> Fern


When my mother was fading, my sister would bring in cheesecake for her.  Apparently her appetite was there for cheesecake - and Burger King.  LOL.


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## susieq (Jun 12, 2015)

So glad to hear you're both doing better!! Take care of yourselves.


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## Fern Modena (Jun 12, 2015)

My mom had a hankering for Carl's Famous Star Burgers, something she hadn't had in years. I used to visit every two weeks (lived 400+miles away) and always stopped to get her one on my way from the airport.

Fern



falmouth3 said:


> When my mother was fading, my sister would bring in cheesecake for her.  Apparently her appetite was there for cheesecake - and Burger King.  LOL.


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## taterhed (Jun 12, 2015)

Patri:

So very very happy to hear that things are 'getting better every  day...'

But, PLEASE REMEMBER!!!!

You are now the foundation, the rock, the support for your DH and home.  You MUST take some time for yourself, occasionally, to do nothing but breath, walk, think, exercise, sleep etc....  

It may seem selfish now, but if you don't take an hour, here and there, to give your self relief, you will being to wear.  I know.    You have no idea how much release, energy and health you can get back from an hour of walking, crying, reading, music or just plain uninterrupted sleep.

You are the foundation.  If you don't take care of yourself...including some small amount of personal time....you can not support the weight on your shoulders.

A big hug for you.  When the time is right, consider a  support group as well.  Just like TUG, there a lots of people with knowledge, ideas and well-wishes just waiting to help you make your journey smooth and successful.

My very best wishes to you.


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## Patri (Jun 12, 2015)

Thank you all, and you are right, it does take a toll. Just this week it really hit how much the daily visits wear me out. I am working full-time, and to fit that into my schedule, including travel time, means I lose a lot of the space I need just to be me.
I will figure it out, but know that guilt is always hovering.


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## vacationhopeful (Jun 12, 2015)

Patri said:


> Thank you all, and you are right, it does take a toll. Just this week it really hit how much the daily visits wear me out. I am working full-time, and to fit that into my schedule, including travel time, means I lose a lot of the space I need just to be me.
> I will figure it out, but know that guilt is always hovering.



You must allow your husband his space also .... being dragged, exercised and shaken all night for pills ... plus the stress of constant strangers .... he needs allow/down time to himself also. He has a cell phone - encourage him to TEXT you and YOU text him with a thought or picture. Face-to-face time is lessen. Cook/bake him a treat; visit with friends for NEW stories to share or to ask them to see or call him next week. You can NOT be his universe ... start building the 'friends' visiting/calling him now ... as leaving him ALONE all day while you work will drive your BOTH NUTS.

If he was 200 miles from home for the best medical care, YOU would still have to be working back home. No daily visits because of a long distance if that 200 miles separation was real --- but now, it has worn you down ... take some time to go slow.


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## Patri (Aug 20, 2015)

DH came home today, almost four months to the day since his stroke. I so wanted him not to come in a wheelchair, but he did. However, we did not have to build a ramp. He can manage three shallow steps into the house.
He will go to a day program for out-patient therapy and socialization, but I see that even the hours from 3 p.m. until morning will be draining. Now I am in charge of his meds and insulin injections (did for the first time) and glucose monitoring. Dressing, toileting etc takes a long time. 
I guess we will get into a routine. This will likely be the worst part of the journey. I hope he continues to improve. I will also hire home health aides if I just can't do it.


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## taterhed (Aug 20, 2015)

Hang in there you'll be rewarded with good karma.  Remember to get support from support groups or other caregivers big hug

Sent from my Kindle...pls forgive errors and brevity


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## vacationhopeful (Aug 21, 2015)

I found and hired companions to sit and watch my mom to give my dad those FREE hours to run earns and who appealed to HER interests (soap stories) - most days, Mom got to watch "her stories" with a woman who also has spent 20 years watching the SAME soaps. Dad "disliked" this less cute woman .... but she engaged Mom, reduced her anxiety levels at not finding the right words and time flew by. Dad got hours to be FREE (while doing chores or computer time).

When Dad was "losing it" after Mom passed away ... I hired a retired carpenter for 3-4 hours a day/3 days a week to repair & paint the trim at his house on the outside. The guy told me the JOB was taking HOURS longer as Dad would come outside and drag him around the property ... asking him to do other things. I told him repeatedly ... I know my Dad and just go with it ... easier to do that than to fight with him. Actually, THAT was the REAL REASON I was having him do the work ... to be Dad's friend, for Dad to engage, to relate and distract Dad. Any work that got done ... great, but Dad LOVED having him around. And the handiman was using this "job" to not be at his wife's beck & call after her stroke 2 years earlier. He needed "man" time. That was good for about 5+ months.


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## Passepartout (Aug 21, 2015)

Patri said:


> He will go to a day program for out-patient therapy and socialization, but I see that even the hours from 3 p.m. until morning will be draining. Now I am in charge of his meds and insulin injections (did for the first time) and glucose monitoring. Dressing, toileting etc takes a long time.
> I guess we will get into a routine. This will likely be the worst part of the journey. I hope he continues to improve. I will also hire home health aides if I just can't do it.



It's good that he is ambulatory enough to manage the steps into the house. As long as he feels that he is making progress, and gaining strength and abilities to do for himself, he will slowly improve some. Stroke victims often progress for as much as a year. 

It appears that this is going to be the 'new normal' at least for a while. Rejoice in those hours when DH can be at 'day care'/rehab. It will give you some time to decompress. Get out of the house. Take in a matinee at the theater. Go to lunch with friends. Even spend some time with your TUG family!

If you can get the aides to do it, maybe even a timeshare vacation within driving distance. It will be a challenge, but well worth working toward. The planning part is often the part of vacations that is the most rewarding.

Our thoughts and prayers are with you. A lot of us have had life's changes force us into different lives than we had planned. Many of us understand. I was a long-haul trucker when my mom had her first stroke. I got off the road and became her primary care-giver. It was a definite life change. You are strong and will persevere. 

Keep up your good work.....

Jim


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## heathpack (Aug 21, 2015)

I've been away from TUG quite a bit and missed this thread.  But my thoughts are with you Patri, hang in there because it sounds like things are going to get slowly better.


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## Patri (Aug 21, 2015)

By the time I got in bed, I realized I had not eaten a true supper. But DH slept well and our morning was good. When I checked his blood sugar last night it hurt. Today I did it right. He was ready for the bus pick-up to daycare. And I saw a yellow rose blooming in my garden, which I thought was done for the season due to our extended heat wave. So things are good.


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## heathpack (Aug 21, 2015)

Patri said:


> By the time I got in bed, I realized I had not eaten a true supper. But DH slept well and our morning was good. When I checked his blood sugar last night it hurt. Today I did it right. He was ready for the bus pick-up to daycare. And I saw a yellow rose blooming in my garden, which I thought was done for the season due to our extended heat wave. So things are good.



Nice on the rose.


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## falmouth3 (Aug 21, 2015)

Thanks for the update.  I'm glad to hear that you've got him home again.  Congratulations on his hard work and your perseverance.


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## Pat H (Aug 21, 2015)

So glad DH is home, although it may actually be harder on you. If you can afford it, hire aides once in awhile so you can get some breathing and alone time. You will need it. Don't burn yourself out.


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## ace2000 (Aug 21, 2015)

A quote from a recent book I've read...

“There were a number of definitions of courage, but now I was seeing it in its simplest form: you do what has to be done day after day, and you never quit.” 

― Eric Greitens, The Heart and the Fist


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## shagnut (Aug 21, 2015)

I just read this and wanted to say I'm so sorry.  You have received very good advice here.  I love Fern's advice.  You are woman -- hear me roar lol.  Like everyone else said , give yourself some me time.  Sending positive thoughts and prayers your way.


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## wed100105 (Aug 27, 2015)

I rarely follow this section of Tug, but found your post and wanted to send you my prayers and hugs. Your strength and determination are inspiring.  May your husband's recovery continue to improve, and may your "new normal" be full of love.


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## Patri (Feb 15, 2016)

Update.
We had a new normal, a nice routine. DH went to an adult day program for socialization and outpatient therapy. Health aides came for a couple hours each weekday after he got home, to continue exercises while I worked. We went to church and occasional outings. He could walk with assistance, handle some personal care and eating. His speech improved and he enjoyed visits from kids and grandchildren.
DH on his own asked DD to get a Valentine's Day card for me, which he signed (with his non-dominant hand). Plus candy.
I was touched when I saw that. But already, on Sunday, I was preparing to take him to the ER. He was experiencing sudden weakness on his afflicted side. After testing, we discover he had a series of mini-strokes last week. His neurological functions are not affected, thank goodness, but his muscle tone is. He will be discharged into a rehab facility again, a hospital or nursing home, depending on what insurance approves. His first stroke was severe, and he was gone from home four months. I hope this time is shorter.
DH is a trooper, but I am so sad. He does not deserve this. No one does. He is 61.
In the ER the lady in the next cubby was 82 and just didn't feel well. On the other side a man was having some effects from his lung cancer. All three situations were serious. I wish all three of them were healthy.


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## silentg (Feb 15, 2016)

So sorry for the setbacks, you need a break too! Sending positive thoughts your way!


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## falmouth3 (Feb 15, 2016)

Yes, he's too young to be in this situation.  I hope he pulls through it again and continues to improve.  Sounds like you've been doing a great job.

Hugs.


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## Tia (Feb 15, 2016)

Too young agree . Prayers for a positive outcome. Hang in there.


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## Zac495 (Feb 16, 2016)

Oh so sad to hear of the setback to your young husband. How is the rest of the family?

All my love,
Ellen


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## JudyS (Feb 16, 2016)

I am so sorry to hear this!  Are his doctors being aggressive in trying to prevent future strokes? A lot of cardiovascular patients are undertreated. The doctors give them one or two drugs, and think that's enough, instead of doing everything possible. (In this case, "everything possible"might include a procedure to clean out his carotid arteries.)


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## Patri (Feb 17, 2016)

So far the news is encouraging. Rehab should take weeks, not months. He does not have a-fib, which is the usual cause. They will do more extensive tests to rule that out. They are determined to find the cause. Insurance approved inpatient at another hospital, which has a great rehab unit, and where we were before. It will be like a reunion.
Usually I am private on Facebook about DH, but this time I did not have the energy to personally tell people about the event. So I posted with a photo of our entire family, as we are all affected. I knew word would be all over town within the day. The response has been very uplifting.


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## Pat H (Feb 17, 2016)

So glad you are getting encouraging reports. Hope you are back to your "normal" routine quickly and that it just gets better from there.


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## Karen G (Feb 17, 2016)

Glad to hear the good report!


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## Passepartout (Feb 17, 2016)

So glad you are getting support from the whole community as well as family. These situations are just too much for just you as spouse/caregiver. You owe yourself some 'downtime' for yourself too. The care facility where your husband will be a good place to help with this.

We wish you and him well and for a great outcome.

Jim


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