ALS From Both Sides

Caregivers for Vented PALS

When someone is considering going on a ventilator one of the first concerns is the added work for the caregivers. The amount of time added varies with the frequency of suctioning and that generally decreases as patient and caregiver adjust to the vent, get organized, and learn that much of what they were told needed to be done is for hospital care, not home care! In addition to suctioning there will be daily washing of the trach area and, depending on the type of trach you have, cleaning the trach tube. Cleaning suction equipment is daily. Changing vent hoses and filters generally drops from weekly to whenever unless infections are frequent. Ordering supplies should only need to be done once a month at most. Any significant increase in care needs is far more likely to be the result of advancement of ALS weakness rather than going on a vent. After a period of adjustment I think you will find your caregiver is actually less stressed, at least by the breathing aspect of your ALS. Congestion that now leaves you both wondering if you can cough it out or if you are going to die this time will be nipped in the bud with suctioning. Any choking spell can still be exhausting but the trach and vent will assure that your airway can't be blocked and you will continue to breath throughout the choking spell.

The reality is that the extra daily workload is manageable but the added months or years of care may not be.

Many people are told that they will have to hire round the clock nurses. Big lie! Or they are told that they will have to hire a vent qualified nurse anytime your caregiver leaves the house. Also not true. If all you need is someone to give your main caregiver time out of the house for shopping, errands, appointments, or just plain escape. Not a nurse, just a relative or friend or two willing to learn how to suction you--and that is nothing more than a minute of glorified vacuuming--and the basics of the vent. You have to ask. No one is going to know that you need help unless you tell them!

The company supplying your vent may offer a training class for anyone willing to help but that isn't a requirement. In fact, they may scare off volunteers with a lot of technical jargon! You can show someone the ropes in ten minutes of instruction and demonstration plus time for them to practice suctioning you. The learning curve is not steep! Vent basics include deciphering vent beeps. If the vent beeps you either need suctioning, a hose is off or loose, or the battery is low and the vent needs to be plugged into a wall outlet. If the problem isn't found they just need to use the ambu bag while waiting for the vent supply company to show up. Suctioning is simple vacuuming. The hardest part is getting a glove on and then remembering not to touch anything except the suction tube with that hand! Most reasonably coordinated people can be shown the procedure, practice it a couple of times, and be ready to go.

If you want a home health care agency to provide care, that can be slow to get started. Check with available agencies early in your planning. Most agencies don't have many, if any, nurses trained and legally allowed to care for vent patients. Even if they are, their visits will probably be restricted to an hour or two once or twice a week. You can get aides to help with bathing and getting you out of bed etc. but someone else must be there to assume responsibility for the vent care. They won't be allowed to give tube feedings or medications either. LPN's and RN's can do those things even if they aren't allowed to be responsible for vent related things. Because of the legal liability limits of Home Health Agencies, the cost, the rather frequent problem of them not showing up, and the possibility of getting someone you just don't want caring for you, friends are most often a better solution for shorter periods of care. If their visits are scheduled on a regular basis it is much easier for your regular caregiver and your other helpers to plan ahead.

The handbook, "Share the Care" is a guide to finding and organizing a group of helpers to form a strong working support group for people and families overwhelmed by care needs. The "Share The Care" handbook is available for you to purchase from Amazon or at Barnes & Noble online and at bookstores for $16.

Lotsa Helping Hands gives a place where volunteers and paid help can see your calendar, view requests for assistance such as time for shopping, cleaning, cooking, appointments, view gaps in care coverage, and sign up to help when needed. They can sign up for a single spot or schedule themselves for regular help.

Another option is to hire your own caregivers. As long as they are not RN's, LPN's, or CNA's, they won't be risking losing their license if you train them to do vent, meds, and feeding tube care. The problem here is the same as finding a sitter for little kids; safe, motivated, compatible personality, adaptable, honest, no criminal background, reliable. If you put out an ad for someone, don't include details beyond “home care help needed". Do background checks, ask for five or more references for work history and personal attributes -- and follow through on them. A good source of caregivers are local nursing or other health care schools (they don't have a license to risk until they graduate) or volunteers from your church.

A live-in caregiver can be great even if they are also working at another job. You can negotiate any pay expected so this saves money. A live-in is a much more personal arrangement so it definitely requires the right personality as well as passing the other checks. It also requires laying out of non-care rules such as smoking, pets, visitors, groceries, etc.

Some states will now pay a small hourly wage to family members who provide your care. They realize that whatever they pay is far more cost effective for the state than forcing you onto Medicaid and into a nursing home.

So, Home Health is not required as long as you have enough family, friends or privately arranged caregivers trained to manage basic vent problems and suctioning. Or, you can use Home Health at first and once you are settled in at home you can train your own people (they definitely don't have to be nurses!) and let Home Health go.

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