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I’m just thinking ahead before discharge. Hospitalized for a stroke two weeks ago. In diapers, bed to wheelchair with 2 person pivot cause nurses are careful but could walk with PT by sides and/or walker for 100 meters. Catheter in, maybe indefinitely due to chronic urinary retention. Feed tube but can now swallow liquids but refused. No paralysis just weak from bed bound. However developed behaviour problems from stroke or early dementia? Started on antipsychotic and antidepressant.


What would be the challenge of bringing home? I would think the acting out behaviour for us. Don’t know if behaviours due to post stroke or dementia starting and progressing because brain damage from stroke. Hopefully the antipsychotic drug would stop the challenging behaviours. Any advice?

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2 person lift = nursing home
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Reply to ZippyZee
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Just reading all of that makes my head spin. Even just the two person lift unless you have a Hoyer lift in your home indicates nursing home for me.

What are the challenges of bring home?
1. Two person lift - are you going to have two people in your/their home 24/7 to help them every single time they need to move? In emergencies etc? If not - that's a game changer.
2. Feeding tube - they can swallow but refuse - are they actually able to be fed at all? Are you intending to have home health nurses in your home frequently or are you the one that will be ensuring that the tube feeding it taken care of? Or is the feeding tube out and you have to sit with them to ensure that they are safe when eating their meal? Or will you have to make special meals (pureed or liquid) to accommodate that lack of swallowing since they are refusing?
3. Catheter care - if that is permanent that in and of itself wouldn't be a deal breaker if you or they are trained on catheter care - but are you or they able to take care of the catheter? Or will a home health nurse be coming to take care of that on a regular basis if not? What happens in an emergency for catheter care? You need to have at least the basic knowledge.
4. Weak from being bedbound. If they are a two person lift - are they also a two person transport? (when they come home -you just don't know...things like carpet can change the entire landscape in this situation)
5. Behavior problems - that's a big question mark. How bad are the behavior problems. Are they screaming all night? Do you know what that will look like at home? Will you be up and down 24/7 to tend to behavior issues?

There are a lot of what ifs here. And even just one of these would probably be a good indicator. A two person lift assist - if that is permanent - is A LOT. Do you have two people in your home 24/7? Because you can't possibly know when you are going to need to get them up. Medical equipment can help, like the Hoyer lift, but that is only helpful to the point of getting them up. The next step is the actual transport. If that requires the extra help...it's probably best to consider a nursing home - unless you/they can afford a nurse 24/7 in their home.

Bringing in a nurse/someone outside of the family with the behavior problems is also dicey. It will depend on what type of assistance you were planning to hire and what their level of training is. Some medications take longer than others to work, and some you have to adjust the levels, and others you have to work to find the right one. So it may not be an automatic answer unfortunately to the immediate issue.

I think in this case you have to consider everything in front of you. If this is just a temporary situation and they improve as they progress, maybe you could initially have them live somewhere with 24/7 care and then as they progress, consider the potential to come home if that is the real goal here, as they get stronger? But it sounds like right now, they aren't physically or mentally in a position to be safe at home.
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Reply to BlueEyedGirl94
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Oldale Nov 17, 2022
Thanks. It looks like the situation will be as is for most. Behaviours (hitting, kicking, refusing) may improve with antipsychotic? I think nurses are careful with the two person lift, cause he does have strength to stand and walk assisted with PT. I don’t think a Hoyer lift is needed in his case. They were able to walk him to toilet two times last week when he was not agitated. He can swallow liquids and apple sauce like textures but refused to for some reason so still have feed tube. He does have physical strength (seen when he is agitated and it took them strength to hold him down and restraint) and no paralysis from the stroke. We can’t afford private nurse 24/7 so if we bring him home it will be a nurse visit from the community care.
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Will this person be coming to YOUR home?

Read the replies below -- just say no. Can't you see that all of the care would be way too much?
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Reply to CTTN55
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Unless you are wealthy enough to hire full time care your PSW will only be available a few hours per week, what do you envision happening the other hours and days when you are flying solo? It's not just a case of protecting yourself from such a high care burden, home care is not going to be comfortable or safe for your loved one.
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Reply to cwillie
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To be totally, entirely fair, age-prognosis-condition/behavior before the stroke occurred- COULD enter into a potential decision, but taken as described?

Residential care for observation and stabilization.
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Reply to AnnReid
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Not many want to choose a nursing home. So asking Home vs NH is a way to obtain validation a NH is needed. I get that.

Reading between the lines.. Oldale you write with a high level of medical literacy. This could indicate you have much higher knowledge (training? life experience?) than the average person. This will help as without such skills, NH would probably be needed. But skills & confidence can bring risk too - risk of ignoring the burden to the caregiver, which will still be enormous.

I would say do a trial of care in the rehab. For a full 24 hours. With staff, then without, doing all transfers, bathing, dressing, meals. If successful/manageable a trial at home (with hired equipment) for 48-36.

Then imagine this as ongoing 24/7. With some small additional help.

Then make your decision.
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Reply to Beatty
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If in a hospital now, a discharge to a Rehab Hospital which also has a long term nursing care unit -- both of which are Medicare and Medicaid qualified -- could be a good option to start. At a Rehab Hospital, your LO can receive direct medical care (the feeding tube, catheter, maybe IV antibiotics, etc.) and PT/OT which (assuming your LO has Medicare) Medicare will cover post hospital discharge for a period of time. In that window your LO can be better assessed as well as a demential workup could then be completed.

Hopefully you have all the "legal paperwork" in place -- a durable Power of Attorney (POA) for financial matters and another for medical decision-making, already executed. Hopefully, you have or can get access (on-line is best) for all your LO's accounts (bank, SSA, 401K, IRA, pension, and other assets). If not, worth getting this all done ASAP and before a firm dementia diagnosis is made as many states do NOT allow POAs to be executed post dementia diagnosis. Get with an elder care attorney licensed in your State to help you with this.

The social workers at the hospital can help arrange the discharge to a Rehab Hospital, just say "it is NOT safe, for your LO to be discharged home at this time." The NOT SAFE words are key. Research facilities to see which one is best one AND, importantly, which have a SNF -- skilled nursing facility right there that covers long term nursing home care; so there is not need to move your LO again assuming the permanent placement at the nursing home is likely which it sounds from the conditions you described is probable. And again, confirm the facility is both Medicare and Medicaid qualified (both the Rehab part and the SNF part), most are but ASK.

Also, when signing any paperwork for the discharge or admit to a "post acute care" facility (Rehab or SNF); be careful to 1) NOT agree pay for any of this yourself, 2) NOT agree to take the LO back if their condition improves or their resources run out (this keeps the responsibility on the facility to work out any next safe discharge decision with you but that they cannot just drop this entirely in your lap to figure out, 3) there are other trick questions and these admit papers can be 100 pages long SO DO NOT RUSH and read it all carefully. Again, an elder care attorney could be helpful here to review said paperwork.

As of others have said, given how you have described the situation unless your LO greatly improves (maybe a 6-8 Rehab stay will show that or not as the case may be), but this is VERY hard to handle at home unless one has LOTS of resources. Most aides only come for a few hours and perhaps 2 or 3 days a week. Sounds like your LO needs 24/7 care and that most likely is SNF/long term nursing home care.

We have a wealthy aunt in New York city (no kids to inherit, no one else wants it), so the family decision (extended cousins) was to "blow bank" on 24/7 care so Auntie can spend her remaining days in her upscale 3 bedroom, 3 bath condo in NY city. There are 3 full time aides, who basically live in. One takes the entire weekend shift. The other two split 12 hour shifts M to F. The cost is $6K a week, or $24K a month......Auntie is 96, and basically is bed bound, needs help with all activities of daily living and the instrumental activities; weak, cannot walk but medically has no immediate urgent needs which could of course change on a dime and land her in a hospital. For now it works, but if she did not have extensive resources; she would be in a SNF/nursing home.

Good luck with this, this is not a fun or easy journey.
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Reply to Sohenc
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I am sorry but this going home sounds like a nightmare. Just getting them transferred is an extreme chore. You will risk hurting yourself changing diapers and transferring.

If you consider discharging to home you will need caregivers during waking hours and only if they sleep all night. What will happen when the caregiver calls out and they do. The catheter would need to be changed every 30 days by an R.N.

New meds often take many weeks before you know if they are a good fit for your loved one.

Rehab although not ideal may at least build up some strength and they will get PT, OT & speech everyday.

I have lived through this same situation with both parents.
I pray the decision you make is the best for your family.
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Reply to InFamilyService
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First if all let me say this is a big decision and one not to be taken lightly. I say this because I speak from experience. Almost three years ago during the pandemic my mother suffered a massive stroke. She couldn’t walk talk or swallow. She was bowel incontinent and had a catheter.
After a short stay at an acute rehab facility she still needed to be lifted and could not walk. She was on thickened liquids and was able to communicate minimally. She should have gone to a sub acute rehab before coming home but with the pandemic it was way too risky. My family decided to bring her home and continue therapy at home. I have two sisters who agreed to help, however, at the time I did not realize what little help they would provide. Luckily I have a supportive husband and two daughters and a son that went above and beyond. Mom ended up walking talking eating regular food and having the catheter removed plus being continent again. Mind you all if this happened but so did many trips to the doctor, ER with falls, uti’s and a blood clot. It was not an easy journey.
My point here is know what your getting into. It is not easy! Almost three years later and I would not have it any other way and I would do it over again but there were and are days when I think I can’t keep doing this!
My Mom needs 24/7 care. She can never be alone. We have home care to help but most is on me. The sisters that said they’d help out come one day a week each for about 4 hours. That is helpful but not at all what I expected them to do. I learned the hard way that I needed to have a network of people including agencies and family and friends to make this work and allow me to have a life of my own.
Just saying it can be done but know what it will take and best of luck to you!
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Reply to Surviving
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I would strongly encourage you to consider NOT bringing person home unless you have 24/7 skilled CNAs / nursing care with experience in these areas.
* It is more than a huge responsibility for family. Most family members are not experienced to care for a person with this level of need. Most family members do not know how to communicate with a person initially inflicted with dementia. (This is the work I do, working with families.)
- It could be physically more demanding than you (can) could manage (and causing injury to yourself); body mechanics for you come first. Without professional training, some people would put the needs of the person they are assisting first, which creates more possibility of injury to yourself, making you / family unable to care for the person needing care-giving.
- Yes, there are multiple medical issues after a stroke; depends on the type of stroke and constitution of the person, and perhaps other factors I do not know about, such as family history. My friend had to be in a nursing home for 1-1/4 years after his first stroke. He had two so far. He is 89.
- I urge you to consider that if you decide to bring this person home that in a week or so, you might need to move him / her into skilled nursing facility for a period of time ... until / unless the physical, mental, emotional/psychological changes stabilize - to the degree you know what you need to do, i.e., speech therapy, PT, exercise, personal hygiene, feeding.
- It would make more sense to transition into a rehab unit after the hospitalization and see how that goes.

* Please consider a TRANSITION into a rehab; talk to the social worker / transition team. You do not want to be in a position to have this responsibility without the professional / experienced staff to manage care.

"IF" you try to do it, you will be burnt out in a week wondering "why did I bring him / her home?" Give yourself some time while giving your loved one the quality, professional care s/he deserves.

- I was training new care givers every day / night, buying food, visiting. I didn't live with my friend (of 20 years). I was beyond exhausted over-seeing meds, scheduled caregivers, training... and I wasn't doing any of the hands on nitty gritty personal care that caregivers do.

Strokes can / do change a person's brain. Find out what areas of the brain have been affected / which kind of stroke and do some research. It can be a very long recovery although (I believe sometimes) the speech comes back rather quickly. And, recovery doesn't mean they return to how they were before the stroke, necessarily.

While a different situation, my friend in the nursing home recovered his speech (within 2-4 weeks), lost more ability to walk / although could get to bathroom with assistance. FOR MANY MONTHS, he begged to go home (I kept his apt open as I didn't know if / when he would return home) so after 14 months, his two medical MDs and I decided 'okay, let him be at home.'

Long story short. he could not even stand with two (smaller in stature) men trying to hold him up (moving him from a recliner 3 feet to the hospital/hospice bed. Once he got in that bed, he never left it. He was bedridden for two weeks, without and needing 24/7 care although he couldn't afford it. He had to be transferred to another nursing home, which is where he is now. He is bedridden. I visit 3 x / week and coordinated two others so he gets around 5 visitors / visits a week.

Gena / Touch Matters
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