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Crazy Lady seeks advice

nancyl

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Ok - input appreciated- especially those who have followed me for years - literally !. Its taken a long time for me to settle down and into my "stroke widow" role. I was pretty young when it happened to Dan and I had ambitions of my own- all flushed when Dan stroked. So after the 4 years of caring for Dan ended with me in the mental institution and him in a nursing home - I am debating bringing him home. Why - Im doing virtually all his cares and still paying the bill for his care. Im finding, I may, in a few years down the line end up in financial issues if I continue to payout for his care, and even though I have a great boss I do not earn but barley a 1/3 of my previous - before stroke salary.

With all the constant care and paying attention needed I could never commit to a job like I had previous . The job I have now accommodates , don't pay well, but is very accommodating.

And I feel the actual want to care for him again in his our home. I feel most of the "RUN" has been taken out of me. Im not running as much , given up the alter life I tried to have.  Of course this will involve some planning and work , by no means is this gonna happen anytime soon. The home I have now is not handicap accessible , can not do long term care in it. So I would have to look at homes AGAIN --again history is repeating itself.

So Im playing with the idea. Have not and will not tell Dan anything as I have not made a solid decision. I kinda feel like I don't want Dans story my story or OUR story to end in the nursing home YET. I recognise I may be repeating a pattern, but the pattern of everyday Nancy to the home to work to the home --- then to my house to sleep and repeat and paying a institution to do what I do isn't working either....

So for fun people digest this..... Yesterday the home had changed Dans bedding - YAH !!! so I notice the blanket on the  one side the visible is hanging really low , so I figured I would pull his bed out and even out the blanket. I pull out the bed and his blanket on that side has like 2 feet on the floor.... Im like WTF ?? so they took the rectangular blanket put it on the bed wrong ( side ways) and figured the extra would just go away... I laughed so hard.. Went and talked to his nurse supervisor and was like - I don't know who special ed is that made that bed , but man if you can't do the most basic simple and easy job in the whole place - I pity the residents.  I wasn't adversarial and not even angry - just the  daily shenanigans of the home is so frustrating. They are having so much trouble as are all the homes hiring that a "warm body" is pretty much the only qualification.

I just don't know that the home is the best for Dan at this point. Im sure he'll end up in a home again, but I guess Im willing to try again... but the decision is not made and a lot would need to happen if thats the decision. Im not in a hurry --- and yes to my long time stroke net friends please chime in tell me what you think. You know my history, you know ME and you know the STROKE ISSUES we all deal with daily.---- Nancy



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Nancy you need to do what is right for you.

 

If you are going to have to move anyway what about a retirement community with an attached care home?  At least that way you will be living close enough to visit easily if/when he moves from your "house" back into full care, it would also give you access to in home assistance before then.

 

Whatever you choose, take your time and don't be guilted into anything. It is sad when his current home can't see the funny side of you pointing out crazy things that happen.

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Nancy, from time to time during Mum's 11 years in care with Alzheimer's  I decided to bring her home. Each time I saw the Director of the Dementia Unit she said: "Think back to when she lived with you." and off I would go and remember sleepless nights, Mum's constant denial of everything I tried to get her to do, the affect it had on family life etc. And I changed my mind. With Ray it was simply that a person who needs three people to shower him simply can't live at home. End of story. So just think of a typical day at home with Dan and see if you could cope with that times seven every week of the year.

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Nancy:

 

I think right now you are looking with different angle & thinking of taking care of him at home, you forgot how taxing it was on your mental health when you tried to do it all by yourself. Caregiving is not easy job. If you decide to bring him home, think about hiring full time help at home, so that you don't get overburdened

 

Asha

 

 

 

 

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Nancy,

  I can understand your predicament.   The job, still caring for Dan at the nursing home and paying for his care.  But,  doing all of the work and getting a house handicap ready will be expensive and taxing for you.  It is so difficult to make that decision.  But, you have to look at all of the angles.  Especially your own health.

 

Ruth

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So nice when someone knows what a snf is like. If you can do this for your Dan it will be a Godsend for him but a big commitment for you. Perhaps respite care can help you for free to get breaks. It may not be feasible so talk to staff to find out his needs. It could be a wonderful time for you both to reconnect. However it takes a village,get villagers around and be prepared so resentments never creep in to erode your relationship.

 

a snf can be the best care. ok they need supervision. But if he needs so much it could be unrealistic for one to do it then you are indeed providing him a safe,clean, accessible place. Perhaps reorganizing is just what you need. 

No guilt that your loved one is in a snf. many are. you must do what is in the best interest for the long term care. Things are not going to improve drastically for him as far as recovery, it is slow after a point so make a wise forever home decision. What about lifting, bathing,can someone come in.

Hospice???So many options. But yet limited. Choose wisely.

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well.... I guess the biggest things that jump into my mind are all the times when he would do the hunger strikes, and remember when he refused to get out of the van for 3 days and ruined it.   I remember him being very cruel to you... often.    At least when he's there, you CAN get away from him and just think of your own welfare.   I have no idea about ther money, is anything in his name still and if not, how long has it been out of his name?   Seems like medicaid could help pay?

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I have thought and thought on it.. For now Im leaving it alone... as in I'll leave him in the nursing home. We looked at another facility, but Dan said no, it was actually nicer and cheaper but he seemed frightened of "change" so I'll leave him where he is at . I guess at the end of the day, we are surviving. So for now I'll leave it alone. Routine seems to be his answer, so he does his scanning at my work, is well behaved while there. Dans money is attached to him, no getting away from that. His stroke was work injury related. So its all paid through insurance, its just wasteful.... but as with all things... It is what it is. 

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