Keeping Your Loved One at Home Versus in an Inpatient Facility
Keeping Your Loved One at Home
Home could be a more nurturing environment for end-stage care.
The patient may be happier and may feel more relaxed and at peace.
If the patient dislikes institutional settings, the caregiver may feel tremendously proud of being able to honor the patient's feelings about this, as the fulfillment of a final wish.
The family can control the atmosphere, without concern for the types of interruptions that occur in an institution (eg, intercom announcements, a room mate who may have disruptive habits).
At-home care eliminates the logistical efforts of driving to a facility and remaining there for hours at a time while visiting the patient.
At home, caregivers can still handle home-related duties like housekeeping, dealing with the mail, and being available for incoming phone calls even while managing the patient's needs, so that "things don't pile up."
Loving caregivers know the patient best---from how cool or warm the patient likes the room...to the patient's favorite foods and music...to how comfortable the patient is with visitors---while institutional caregivers do their best but might miss opportunities for true comfort.
Especially when the patient has lost the ability to communicate well, family members are often much more successful at "reading" the patient's needs based on hand motions or a certain look; an institutional patient may find that communication is much more challenging with unfamiliar nurses when family members are not present.
When children are in the home, ongoing routines can be easier to manage, without the need to drive back and forth between the house and the hospice facility.
When children are facing the loss of one parent, keeping the situation at home can maintain open access to the healthy parent during a very vulnerable time in their lives.
It can be beneficial for children to have continued access to their loved one---to join in caregiving in whatever way suits them---and some children may find it less frightening to handle such things at home than in an institution, where they must see many other ill people of various ages and conditions whenever they visit.
Support for the caregiver can be stronger at home, where visitors may be more comfortable stopping by to visit, calling on the phone, or bringing over a meal.
There is less fear for the caregiver that he or she might miss special moments, including the passing, because the patient is in the house rather than miles away.
There are increased opportunities for special conversations, touches, and glances that occur spontaneously between the patient and the caregiver, making meaningful memories.
Caregivers can be more comfortable in the home setting---can walk around in PJs, turn on a favorite show or music, relax while the patient sleeps, grab a snack more easily, etc.---and when the caregiver is comfortable and relaxed, the quality of care is often better.
A conflict with a visiting hospice volunteer, for whatever reason, can be easily resolved by replacing that case worker with another; conflicts that occur in a facility can be more difficult and it is unlikely that a "problem" nurse would be removed from the patient's case.
It stands to reason that even highly qualified and talented nurses might not have as much to offer a patient as those who love him or her, offering reassurance that even a caregiver who is "guessing his or her way along" will do just fine.
Hospice assistance all along the way, as well as at the time of death, removes many of the more intimidating questions and challenges one would anticipate in planning for a death at home.
Placing Your Loved One in an Inpatient Facility
A tentative caregiver may feel ill at ease with the responsibility of monitoring medical issues at home, since hospice visitation may not take place daily.
A caregiver who is aged or dealing with physical challenges of his or her own may find that managing home care for an end-stage patient may be, realistically, too much to handle.
Caregivers often find it hard to shut down and give in to sleep, at night or when the patient is resting, because they can't help but hear every twitch and turn, so having others handle blocks of time at a facility where the patient will be safe can be a relief.
A caregiver who would have to handle things solo, with no relief aside from hospice visitations, might find it exhausting to deal with "all the shifts" 'round the clock, and the person in this situation may feel it is more practical to accept the help of a facility in order to protect his or her own overall health.
The layout or size of the house may not lend it well to in-home care, if major modifi-cations would be necessary or if most of the living is done above the ground floor.
Some children---older children (pre-teens to teens) in particular---may find it harder to deal with witnessing the end stages at the house where they live. They may be:
Embarrassed and uncomfortable because of what their friends know about the situation
Put out by how the illness has negatively impacted their own freedoms (for example, to be unable to use the phone at will when an incoming call is expected or to be unable to go out with friends because no one is available to drive them); even the kindest child, with the greatest love for the dying patient, will
occasionally express some "ugly" emotions as part of the process of coming to grips with thingsAwkward about seeing their loved one undressed or unable to perform basic functions
Unsure of what to say to the dying patient
Hurt to see the patient's personality changing or to see the patient "moving away" from their previously loving relationship
Full of spiritual questions that had never arisen before and which they lack the maturity for just yet
Deeply sad and unable to adequately able to express their feelings at times
Angry, without knowing exactly why
Jealous over having to share the healthy parent with the parent who is ill
Upset about the lack of privacy which tends to occur when the household becomes more public to visiting family and friends
Afraid that the death will be a frightening or "creepy" event
May feel a sense of responsibility to be "the strong one" for the healthy parent or younger siblings
Too preoccupied to concentrate on academic work, whether at home or at school
May take advantage of the healthy parent's vulnerability by manipulating emotions for a desired result
Anxious about what it might feel like to continue living in the house after a death has occurred there
Those who are afraid that it might be hard living afterward in a house where sad memories exist may find that it feels more right to take the situation to a facility they are unlikely to see again after the death, allowing home to house only the best memories.
The patient whose behavioral and personality changes have created a volatile home situation would best be handled in a professional facility accustomed to such cases. While this is rare, some patients have been known to become verbally abusive to other adults or children or have threatened physical harm to themselves or others.
There is no question but that most loving caregivers would be underqualified to deal with these aspects of tumor-induced dementia and that defusing a dangerous situation is simply the smart thing to do.
Caregivers can come and go with flexibility and can continue working part-time if the situation demands it, whereas an at-home situation might require out-of-pocket nursing expenses to cover scheduling gaps.
Those who aren't sure they can "handle this" all right and who are uncertain about how strong they feel emotionally might feel that being able to rely on professionals is much less stressful and still allows them to feel loving and attentive.
Some of those who used inpatient facilities for their end-stage loved ones expressed relief that their visits were strictly social and happy, not having to involve the more detached physical/medical duties that would have been required at home but that skilled nurses were now performing.
The patient who is afraid that their loved one would be "taking on too much" by keeping him or her at home might be relieved by enlisting professional care, especially in cases when the general support network is slight and the caregiver might be left alone after the approaching death.