×

You Have The Right To Direct Your Own Care

Question: My spouse is in a facility and I really want to bring my spouse home. What are my options? Am I allowed to do that? How do I get help?

Answer: This is a great follow-up question to last week. Your spouse is in a hospital OR in a facility (such as a Nursing Home or Assisted Living Facility) and you feel that bringing them home is the best answer for you. You are allowed to change your decision about level of care and bring them home at almost any time. Sometimes this happens when individuals are very close to death and the family would like to bring them home to die. That would usually be under the program and guidance of Hospice. This is not your situation.

You would like to bring them home because that is where your spouse wants to be. You also feel that with some help you could be successful in providing their care at home. As I said last week, the staff at the facility where your spouse currently is has an obligation to provide for an ‘appropriate discharge plan’. That means they will work with you to help make referrals and set up the anticipated needed services. Very often these discharge planners, social workers and case managers will set up more services than you feel is necessary. I would advise you to start with more help rather than less. As you progress and adjust to the new living situation for everyone involved, you can add on or reduce the amount of help you have.

I have also been involved in situations when the staff of the facility does NOT recommend returning to home. The case may be complicated to handle, or involve medical procedures that many families are not trained to handle. This could be something like tube feedings or IV’s or maybe wound care. I would encourage you to listen to their concerns, but also realize there are a lot of support alternatives for most situations. Many of us as family members can be trained to handle these feedings, or wound care, or renal dialysis procedures. You don’t HAVE to be a nurse to do that for yourself or your family member in your own home. It is certainly helpful if you have the professional training, but not always necessary.

You also can hire professionals to help you if necessary. Home Care Agencies and private individuals who are professionals are available for you to hire and provide the care necessary for your loved one. There will certainly be a cost to pay for those services, so you should research that in advance.

I have been involved in situations where the client wants to leave the Nursing Home because it costs more than $300 per day. Once they review the needs they have for help at home it can come in much higher than that. Imagine a situation where a single person cannot be alone due to their limited physical functioning. That 24 hour help at $20 per hour (a reasonable local cost), would be $480 per day, much more than the Nursing Home. In addition, you need to pay for food, utilities, taxes, rent, etc. You can see a Nursing Home is a pretty good deal for many individuals.

My advice is to work with the discharge planners, social workers, or case managers, who are there to help you. Remember that they have a legal obligation to make an appropriate plan for care. Once you are home you can adjust that plan as you feel is appropriate. You can add help, or meals, or reduce help. You can make home modifications, like ramps, handles and handrails, shower chairs, lift chairs, etc to make your home situation more accessible and safe for your spouse. I would always recommend making those changes before they get there. Once you get home, you may find that doing other things help as well. Maybe removing a closet or bathroom door, helps the person move around easier. Adding a bench into the bathroom to sit on while washing their face or brushing their teeth makes sense. Getting a raised toilet seat or a commode for the bedroom makes nighttime toileting easier.

You and your spouse have the right to direct your care and be in the least restrictive environment. You can make a plan to return to the home. If you do that in a planned way, you may have a lot of success. That is the goal of the staff at your facility. They want to make this planned discharge successful. Sometimes they are reluctant to try this plan, and you must be motivated if you want to make it work. You also need to realize it will be WORK. Taking care of someone is a lot of responsibility. You can do it with help, at least that is what I would recommend.

I think discharge planning is the most successful when you plan to get more help than you think you need. You can always cut back on the help coming. That usually sets you up to succeed. If you try it alone and then try to get help once you are already overwhelmed, it may not be as successful at home as you had hoped.

Once you get your spouse home, you will find things you need to adjust to continue your successful care situation. You may also find that it doesn’t work as well as you have planned. You may end up returning to a care facility again in the future. This is the other reason I recommend working with the support staff where you are now. You do not want to ruin the good working relations you have with the staff. You may want to or need to return to that facility in the future. So don’t burn that bridge, leave with a positive relationship with the staff.

If it becomes necessary to return to a facility in the future, you can contact them and ask the procedure. Depending on how long you have been gone, or the care your spouse needs the procedure for readmission or return may be different than you expect.

Good luck in your planned discharge. I hope that being at home is all you both hope for. There are lots of issues to think about and plan for. I am pleased you are asking these questions in advance. That is a formula for success.

To contact Janell Sluga, GCMC with questions or concerns, please call 716-720-9797 or e-mail her at janells@lutheran-jamestown.org.

Newsletter

Today's breaking news and more in your inbox

I'm interested in (please check all that apply)
Are you a paying subscriber to the newspaper? *
   

Starting at $4.62/week.

Subscribe Today