Tag Archive | home health care

Making Life a Little Easier in the Care of Our Loved Ones with Dementias and Alzheimer’s Disease – Part 3

elderly father adult son caregiver dementia ADThis is the last in a series of posts that discusses everyday practical needs that almost no one ever talks about in providing care and making life easier for both us as caregivers and the loved ones with dementias and Alzheimer’s Disease that we care for.

In the first post in this series, we discussed how to make things easier day-to-day for our loved ones in the areas of eating and incontinence.

In the second post in this series, we discussed day-to-day helps in the areas of personal grooming and bathing in the journey through dementias and Alzheimer’s Disease with our loved ones

In this post, we’re going to discuss the other day-to-day areas where we can make care easier for ourselves and our loved ones in the journey through dementias and Alzheimer’s Disease.

The first area we’ll look it is how to effectively and safely address limited mobility and problematic mobility issues that arise both as a result of the progression of these degenerative neurological diseases and the aging process itself.

Because dementias and Alzheimer’s Disease affect the parts of the brain that control movement and balance, even our loved ones with no other health-related mobility limitations will eventually develop a shuffling gait and maintaining their balance when standing or walking will be difficult, increasing their risk of falls and injuries.

Our loved ones will also have a much harder time getting up and down from a seated position.

One of the most noticeable difficulties will be getting up from and sitting down on the toilet.

bedside commode going gentle into that good nightMany occupational therapists will recommend, as part of the home adaptive accessory purchases, buying a bedside commode for use when our loved ones are sick and unable to easily get to the bathroom or when – especially toward the end of life – if our loved ones aren’t completely immobile, walking any distance is too difficult.

A bedside commode will cost between $30-$40 out-of-pocket and can be purchased at a local medical supply store. However, with home health care or palliative health care, this will be covered by insurance (Medicare or other insurance) as part of the home health care or palliative health care services and equipment.

Occupational therapists will also recommend using the chair portion of the bedside commode over the bathroom toilet in the interim to facility easy standing and sitting.

This is not the best option.

The bedside commode chair is wide, and often won’t fit well, especially in smaller bathrooms, and securely enough over the toilet for this application.

Additionally, the distance between it and the toilet (even with the open guard that comes with most of them) makes keeping the toilet area clean and sanitary more difficult.

So I recommend, instead, a raised toilet seat with arms. 

raised toilet seat going gentle into that good nightA raised toilet seat will cost around $60 out-of-pocket and can be purchased at a local medical supply store. However, with home health care or palliative health care, this may also be covered by insurance (Medicare or other insurance) as part of the home health care or palliative health care services and equipment.

The advantage of a raised toilet seat with arms is that it attaches to the toilet, is more secure when standing and sitting, and is more comfortable than the bedside commode chair. It is also more sanitary and easier to keep clean.

Installation is quick and easy. With the toilet seat up, the raised toilet seat is placed directly on the bowl of the toilet where it attaches securely with a large plastic bolt to the inside of the bowl.

As our loved ones progress in their journeys through dementias and Alzheimer’s Disease, they will become more sedentary than active.

This will mean sitting for long periods of time. Motor skills become more muted with neurological degeneration and a lot of the automatic sensory information that the brain gets, processes, and responds to will disappear.

Therefore, it will become less automatic for our loved ones with dementias and Alzheimer’s Disease to feel the natural discomfort of sitting in one position or sitting still for a long period of time that, when we’re neurologically healthy, causes us to automatically move and shift weight frequently when we’re seated.

This results in the increased likelihood of pressure sores and pressure ulcers developing. Once the skin breaks down in this manner, treatment and healing are difficult at best. Because of this, infection and sepsis often follow leading to death.

The most effective way to prevent pressure sores and pressure ulcers from sitting for long periods of time is to buy padding for chair foam pad going gentle into that good nightthe chair that distributes weight more evenly and that does the work of ensuring that automatic shifting of weight occurs.

The least expensive way (about $20) to do this is to put a thick (at least 4″) egg-crate-type foam pad (most come with a plastic covering to help with incontinence issues) in the chair that our loved ones with dementias and Alzheimer’s Disease spend most of their seated time in. 

These can be purchased at most big-box retail stores.

Another physiological change that occurs for our loved ones as dementias and Alzheimer’s Disease progress is difficulty swallowing (known as dysphagia). This difficulty includes liquids and solid foods, as well as medication.

Dysphagia presents two real dangers to our loved ones. One is choking. The other is aspirating food into the lungs, which can lead to the development of pneumonia. In fact, it is more common than not that pneumonia is the cause of death for our loved ones with dementias and Alzheimer’s Disease.

That’s how serious swallowing issues are for our loved ones.

However, we can help mitigate this risk by some very simple techniques that will facilitate easier swallowing and reduce the risks of choking and aspirating food into the lungs.

Let’s start with taking medication since this is usually where swallowing issues appear first in the journey through these neurological diseases.

However, before I discuss the technique that usually is helpful for our loved ones to more easily swallow medications, it is important to discuss the medications themselves and the form they are administered in.

pill cutter splitter going gentle into that good nightFirst, as caregivers, we should all have a pill cutter (also known as a pill splitter) as part of pharmacy stash. These can be pick up at any pharmacy very inexpensively.

This will come in handy when managing medications with varying dosages (such as diuretics or glucocorticoids like prednisone, which might be increased temporarily or gradually and then decreased the same way). 

However, I strongly advise against a pill crusher and crushing any medications (although assisted living facilities and nursing homes routinely ignore this when administering medications to residents with dysphagia). The reason is because there are medications that when crushed can cause serious side effects and become completely non-therapeutic.

unsweetened applesauce medication swallowing going gentle into that good nightWhen our loved ones with dementias and Alzheimer’s Disease begin to have problems swallowing medications with water or juice, the easiest and usually-most-effective way to help them be able to swallow the medication is to use applesauce (I recommend unsweetened).

Put the pill on about 2/3 teaspoon of applesauce, which goes down the throat more easily, and swallowing should be much easier.

If our loved ones have medication that come in a large pill form (potassium supplements are a good example and because they tend to dissolve in the mouth and are very bitter are not a good candidate for cutting in half), we should have our loved ones’ primary care providers (PCPs) prescribe a different form of the medication.

Some medications are available in a liquid form (potassium, for example, comes in a liquid form and can be mixed with applesauce).

Other medications are available in a sprinkle form (for example, Depakote, which is often used for mood balance in Lewy Body dementia because of the high sensitivity to anti-psychotics like SeroquelXR, is available in sprinkle form and can be mixed with food).

If a liquid or sprinkle form of the medication is not available, then we should work with the PCP to change to a smaller-pill alternative that will produce equivalent results.

As swallowing becomes even more difficult for our loved ones, liquids and solid food may need to be altered as well.

Sometimes this can be as simple as cutting up food (meat, for example, can be very hard to chew thoroughly in large pieces) into very small pieces and modifying or eliminating foods.

Easy foods to modify are vegetables. Raw vegetables and salads become difficult to chew and swallow for our loved ones as they reach this stage of dementias and Alzheimer’s Disease. Easy alternatives to ensure good nutrition are cooked beans and finely chopped vegetables, including pureed vegetables and beans dysphagiasome of the lettuces we normally use for raw salads (avoid kale and mustard greens – I use these for raw salads – because even cooked, they can be difficult to swallow).

You can also use these cooked beans and vegetables to make a creamy pureed soup. The key is to make the soup so that it approximates the texture of applesauce (not too thick and not too thin).

And I will pass this modification on as a personal note – if you want my recipe, email me at goinggentleintothatgoodnight@gmail.com – for cornbread. Crumbly, grainy, and textured breads and crackers are eliminated from our loved ones’ diets when swallowing everything becomes problematic. The reason is that they can choke and aspirate the little grains and crumbs into their lungs.

But my mama loved cornbread and I wanted to see if I could find a way to keep it in her diet. I had been doing some reading on healthy substitutions in baking (for oil, for sugar) prior to this ever being an issue, so I decided to try one of the healthy substitutions for oil – yogurt – in a batch of cornbread to see if it would change the texture from grainy to smooth. It worked perfectly (beautiful texture) and we were able to keep that in Mama’s diet (and any time we can find a way to do this, please go for it and try it!). 

Swallowing issues may advance to the point where the dysphagia diet levels need to be implemented. There are three levels in this diet, depending on badly swallowing is compromised. I have not personally used these, although I’m familiar with them.

However, this is something that a speech therapist with home health care or palliative health care is qualified to and can help and guide us through at this juncture with our loved ones with dementias and Alzheimer’s Disease.

I can’t emphasize enough how important it is for us as caregivers to have one or other of home health care or palliative health care on board as we provide care for our loved ones since they have resources, like speech therapists, who are available to walk us step-by-step through each phase or issue that we may encountered.

This is the last post in this series. If there are other day-to-day “in-the-moment” things related to caregiving for our loved ones with dementias and Alzheimer’s Disease that would make your life – and, no doubt, many others’ – easier that you would like to see discussed, leave a comment here and I’ll work with you to get you the answers and the help you need.

And please don’t forget to share this on social media. Dementias are more prevalent than ever – and will only increase from this point on – and more and more people are in the role of caregiving for their loved ones.

I often have people ask me what they can do to help and support other caregivers. All you have to do is share. I’ll do the hard lifting of research and writing. 🙂

Even if you don’t know all the people in your online networks, by sharing this information with them, you may be giving a lifeline to someone who is struggling, feeling overwhelmed, and completely alone on their journey.

We never know whose lives are crossing the path with ours. And this may be a random act of kindness that you’ll never even know you did. All you have to do it hit the Share buttons (and there is an email button for those who may not be on social media) for the social media forums you’re on to pass this information along to whoever may need it and can use it.

Thanks!

The Layperson’s Guide to Hospice Care for Our Loved Ones with Dementias and Alzheimer’s Disease

hospice care for our loved ones with dementias and alzheimer's diseaseThis is the last installment in a series that Going Gentle Into That Good Night has presented to discuss, in clear, practical, and informative language, the on-going health care options in the home that are available for our loved ones with dementias and Alzheimer’s Disease.

In the first post, “The Layperson’s Guide to Home Health Care for Our Loved Ones with Dementias and Alzheimer’s Disease,” we discussed the home health care option.

In the second post, “The Layperson’s Guide to Palliative Care for Our Loved Ones with Dementias and Alzheimer’s Disease,” we discussed the relatively-unknown and highly-underutilized option of palliative care, which all caregivers at home should have in place for their loved ones in the long journey between acute health crises and death.

In this post, we will discuss the hospice care option. I will talk about the requirements to be admitted to hospice care and what it means for our loved ones with dementias and Alzheimer’s Disease in terms of the kind of care they can receive.

I will also discuss how hospice care works in a home setting (there is a hospital hospice option, but we will not discuss that in this post which is geared toward caregiving for our loved ones at home).

I will also walk you through the end-of-life process and how hospice is designed to support our loved ones and provide assistance to caregivers in the immediate aftermath of the death of our loved ones with dementias and Alzheimer’s Disease.

And, finally, I will frankly and honestly talk about the good, the bad, and the ugly that the hospice experience can be and I will provide you guidance on how to handle that at a time when mentally and emotionally this can be the toughest decision we make in caring for our loved ones with dementias and Alzheimer’s Disease.

Hospice care, in general, is available to our loved ones only when they are in the terminal (six months or less until death) stage of an illness.

The difference between hospice care and home health or palliative care is that while home health and palliative care are curative (treatment to stabilize and/or improve to extend life), hospice care is comfort (treatment to provide physical comfort while the terminal disease takes its natural course to death without intervention).

The requirements for admission to hospice care under a dementias/Alzheimer’s Disease diagnosis are essentially that our loved ones have already knocked on death’s door and the door is slightly ajar:

Must exhibit two of the following:

  • Ability to speak is limited to 6 words or fewer
  • Ambulatory ability is lost
  • Cannot sit up without assistance
  • Loss of ability to smile
  • Cannot hold up head

Must exhibit all of the following:

  • Inability to ambulate independently
  • Inability to dress unassisted
  • Inability to bathe properly
  • Incontinence of urine and stool
  • Inability to speak or communicate meaningfully

Failure to thrive in the following areas:

Clinical:

  • Progression of disease documented by symptoms or test results
  • Decline in Karnofsky Performance Score
  • Weight loss supported by decreasing albumin or cholesterol

Dependence in two or more of the following:

  • Feeding
  • Ambulation
  • Continence
  • Transfers
  • Bathing and dressing
  • Dysphagia (difficulty swallowing) leading to inadequate nutritional intake or recurrent aspiration
  • Increasing emergency visits, hospitalizations, or physician follow-ups related to their primary medical diagnosis
  • A score of 6 or 7 in the Functional Assessment Staging Test (FAST) for dementia
  • Progressive stage 3-4 pressure ulcers in spite of care

Because of the prevalence of comorbid diseases – such as heart disease, unmanageable high blood pressure/strokes, diabetes, and organ failure (kidney failure is quite common in these three diseases because they affect the kidneys directly either in the disease itself or in the treatment of the disease) – that exist, especially in our elderly loved ones, alongside of dementias and Alzheimer’s Disease, it is very likely that admission to hospice care will be for one of the comorbid diseases instead of because of dementias and Alzheimer’s Disease.

In my mom’s case, we transitioned to hospice care under heart disease when Mama was having chest pain regularly. The palliative care nurse suggested that we go to the emergency room one morning when the pain was particularly acute and Mama said “No,” and I backed her up (Mama and I had, a few months earlier, according to her wishes, agreed on no more hospitals). Mama had the major heart attack that would, 12 days later, result in her death the following night of the day after she was admitted to hospice.

When our loved ones with dementias and Alzheimer’s Disease are admitted to hospice care at home, several things are supposed to happen (I will talk later about researching and deciding on hospice care before you need it since you do not have to use the hospice care of the care agency providing home health and palliative care).

hospice care kit going gentle into that good nightThe first thing is that a comfort kit is overnighted to the home for administration when needed (and if a hospice nurse is not immediately available to provide the care). Included in the comfort kit are basics like liquid morphine (hospice will provide more if needed), mouth swabs (keeps saliva from collecting mouth and throat),  and Atropine drops or Levsin (minimizes wet respiration).

Hospice also has a two-week supply of all medications that our loved ones with dementias and Alzheimer’s Disease are taking specifically for the disease they are admitted under overnighted to the home.

A care team consisting of nurses, a social worker, a chaplain, volunteers to sit with our loved ones if we need to get groceries, and certified nurse assistants (CNAs) to help with daily hygiene care is also put in place to assist in supporting our loved ones and their families along the journey to death.

Our loved ones and we can chose which of these non-medical care team members to utilize. In Mama’s case, for example, we had a spiritual inner circle of longtime friends-who-were-family who provided, along with God, our sole spiritual support. We also took care of daily hygiene on our own.

Our experience was less than optimal in the other areas (including nursing until a home health nurse happened to fill in for the hospice nurse the last few days of Mama’s life).

In fact, our experience was so bad that I had decided to switch to another hospice care agency two days before Mama went into her death sleep (for my readers in the Tri-Cities, Tennessee, area, please email me at goinggentleintothatgoodnight@gmail.com for details on the various hospice providers in the area and which one I was going to change to on the recommendation of home health nurses I trusted).

Nursing visits should be frequent, but will increase to daily as death for our loved ones with dementias and Alzheimer’s Disease draws closer.

After death, the hospice nurse will be our first contact. They will notify the funeral home, clean up and dress (you can choose to assist or not in this process – I assisted with Mama because it was a way that I could show her respect and maintain her dignity) our loved ones, and take care of the paperwork for the death certificate.

After the funeral home picks up our loved ones, the hospice nurse will, with our assistance, document, dispose of and destroy all the medications provided by hospice, including any remaining comfort care medications.

comfort-hospice-going-gentle-into-that-good-nightLogic would seem to indicate that hospice care team members are sensitive, gentle, and supportive. However, in many cases, none of those things are true.

I did my homework on hospices before Mama needed hospice care. I asked friends of mine who were nurses involved in elderly care for their recommendations since they dealt with all the hospice agencies in the area.

However, one of the caveats I found is that hospice agencies can deal differently with medical professionals (i.e., better) than with family members of loved ones who are in need of hospice.

When I talked to the first hospice agency that had been recommended to me, the first words out of the director’s mouth, before I’d said much more than my name, were “We’re not a babysitting service!”

The nastiness in her tone and what she said took me totally aback. Even looking into hospice care as an option is emotionally and mentally tough because it means we realize that time for our loved ones with dementias and Alzheimer’s Disease is short and finite and we’ve accepted the reality of rapidly-approaching death.

Even though there’s a rational, logical, objective component in that realization, the emotional and mental component of wrapping our heads around it isn’t so cut and dry, and a little empathy, compassion, and gentleness in the recognition by a hospice care agency is not unreasonable to expect.

The reason is that the first contact we as caregivers and advocates for our loved ones make to a hospice care agency leaves an impression on us as to the kind of care that agency will provide for our loved ones. If they treat us badly, then it’s safe to assume that is the quality of care that our loved ones with dementias and Alzheimer’s Disease will receive.

I crossed the first hospice care agency off my list simply because of those first words out of the director’s mouth to me.

The hospice care agency that Mama and I ended up with was not the one I wanted because I’d had a similar bad first contact with its director. However, the hospice care unit was in the same provider that we had received home health care and were receiving palliative care from and the hospice care director showed up with the palliative care nurse on the day that Mama was having acute chest pains.

The director of hospice care said it was time to admit Mama to hospice for heart disease and I knew at that point that I didn’t have the luxury of time to get another hospice care agency lined up and on board, so I did what we needed to do for Mama, despite my strongly negative impression from my first meeting with the hospice care director.

For the first eight days Mama was under hospice care, she and I were pretty much on our own. The only real support we got was through a couple of phone calls to the 24/7 medical line.

It was not until a home health care nurse (I knew he was a home health care nurse and he confirmed it when I asked him – the night and day difference in care for Mama and support for me was that obvious) from the agency filled in for the hospice nurse who was finally supposed to visit Mama showed up four days before Mama died that I had any confidence that I had made the right decision by switching Mama to hospice care.

I share this personal experience because it’s not as unusual as you might think. I’ve heard similar stories from other people with other hospice care agencies in other parts of the United States and the world. 

That’s why you need to know that, if our loved ones with dementias and Alzheimer’s Disease have a longer time frame to death than my mom had, you have the ability and the choice to fire a hospice agency that is not working, whatever the reason(s).

Hospice care is designed to be comfort care – and that includes good support for caregivers and the family – and if that is not the outcome for our loved ones and us, then that is unacceptable and we have the freedom to switch to an agency who does provide what a hospice care agency is supposed to.

The Layperson’s Guide to Home Health Care for Our Loved Ones with Dementias and Alzheimer’s Disease

Part of the caregiving team we will lead for our loved ones with dementias and Alzheimer’s Disease will – and should – include home health care, palliative care, and hospice. It is, therefore, important to understand what each of these services provides and under what circumstances.

Home health care is generally provided – if it is not offered, then we should request it as part of the discharge process – after our loved ones are hospitalized for an acute serious illness that is causing systemic problems (strokes, heart disease, hard-to-manage blood pressure, embolisms, and continuously low oxygen saturation levels are some examples of acute serious illnesses) or surgery that requires follow-up monitoring and wound care. 

What services are included in home health care?

Nurses, who function as case managers, will come to the home from one to three times a week (depending on the severity of need) to do a thorough examination of our loved ones, provide wound care (if applicable), and serve as the liaison with both the primary care provider for status updates and medication changes (if needed) and with other services included in home health care.

I strongly advise, especially for our loved ones with dementias and Alzheimer’s Disease, to request that the same nurse – if he or she is a good fit – do all the home visits to ensure continuity and to create comfort and trust for our loved ones. If the nurse is not a good fit, then we should request a change. Generally, it will be obvious on the first visit.

Physical therapy, occupational therapy and speech therapy are also services offered by home health care. At the very least, I would suggest taking advantage of physical therapy and occupational therapy. For our loved ones who have suffered strokes and are recovering, speech therapy should be included as well.

Hospitalizations always leave our loved ones weaker physically than they were before being admitted, because with acute illnesses and surgeries, they usually spend a lot of time lying in bed and are not as physically active. In the case of strokes, motor skills are usually severely affected on one side of the body, although in some cases both sides are affected (depending on where the stroke originated in the brain).

Physical therapy will begin in the hospital in some cases, such as with strokes or joint replacements, but most hospitalizations will not include this as part of treatment.

Therefore, it’s vital to our loved ones’ health to use the physical therapy services provided by home health care to regain strength and to keep them as mobile as possible for as long as possible. In the case of strokes, it’s imperative to continue physical therapy as part of the recovery at home.

Physical therapists will visit the home, on average, twice a week and will help us and our loved one with exercises and activities to do on a daily basis to continue strengthening and improving balance, mobility and motor skills. They will also order any mobility equipment – if we don’t have it already – such as walkers and wheelchairs, if needed.

Occupational therapy helps identify what physical adaptions of the home need to be made to make daily activities easier and safer for our loved ones. These include things like grip bars near the toilet for ease of getting up (or a sturdy raised toilet seat with bars – my preference), grip bars in the shower or tub to prevent falls, and transfer seats for the tub to make getting in and out easier. They can also identify safety hazards – for example, throw rugs are very hazardous for elderly and those using walkers – in the home.

Additionally, occupational therapists can help our loved ones with functionally-appropriate ways to do everyday things. While our loved ones with dementias and Alzheimer’s Disease generally find their own unique adaptive ways with our help, occupational therapists are critical in the recovery or maintenance of people who have suffered strokes.

home-health-careSpeech therapy can be helpful for people who have suffered strokes. In the case of our loved ones with dementias and Alzheimer’s Disease, in general, speech therapy is not a viable option.

The nurse (case manager) will contact these therapists as warranted and set up the initial consultation appointments. Each therapist will then set up his or her own visitation schedule.

If additional assistance is needed with daily activities such as bathing, most home health care agencies have home health aides who will come at least twice a week to help with with those activities.

One of the best features of home health care is our access to 24/7 medical support. As anyone who has been a caregiver knows, the need for medical advice and/or assistance often occurs at night and on weekends. Without home health care, the only option is to take our loved ones to a hospital emergency room (nights) or an urgent care facility (on weekends).

Many of the medical issues that occur are easily treatable at home, so having to get our loved ones to a medical facility where they often have to wait for a considerable amount of time to be seen, treated and released is very stressful and hard on them.

With the 24/7 medical support of home health care, we can easily assist our loved ones at home without creating unnecessary stress and discomfort for them.

Home health care services are covered by health insurance (if under age 65) or, if 65 or older, by Medicare Part A (80%) and Part B Supplemental Insurance (20%) and should not incur any out-of-pocket costs for our loved ones with dementias and Alzheimer’s Disease.

We should be aware that most hospitals partner with a particular home health care agency in the area (most of the corporations that own hospitals have a home health care agency as a business unit in their corporate structure), but we should research – the best (and worst) referrals come from other people who’ve used an agency’s service – all the home health care agencies in the area we live in and choose the one that best suits the needs of our loved ones with dementias and Alzheimer’s Disease.

All home health care agencies are not created equal. Some provide excellent care and service and some do not.

When our loved ones are discharged from the hospital, a discharge coordinator will be involved and he or she will initiate our request for home health care (again, they will not always offer it, but we should always request it). If we don’t have a preference, he or she will use the home health care agency the hospital partners with. If we do have a preference, we should state that. Then he or she will contact that home health care agency to provide follow-up care in the home.

It’s important to be aware as well that we have the right to fire a home health care agency and, going through our loved ones’ primary care providers, get a referral to another home health care agency that we choose.

We should not and do not have to accept poor or inadequate care for our loved ones, nor do we have to accept a situation where the attitude of the staff is poor or indifferent and where the staff does not treat our loved ones with respect, kindness, dignity, and gentleness.

If the home health care agency providing care for our loved ones with dementias and Alzheimer’s Disease is not satisfactory, for whatever reason, then today is the day to make the change to another home health care agency. We owe our loved ones the best, the most professional, and the most respectful medical care available. Never settle for anything less than that.

In the next post, we’ll look at the option of palliative care and when it is used and what services it offers.

 

Guide to In-Home Medical Care Options for Our Loved Ones Suffering from Alzheimer’s Disease and Dementias

This post discusses home health care, palliative care, and hospice care options. Included in the video below are descriptions of each of these options and recommendations and advice, from my personal experience as a loving caregiver for my mom, about each one.

To begin the video, simply click on the “Play” arrow and the video will play (there is no sound).

Please continue to give me feedback on topics you’d like to see discussed here. This is our blog and, while I’ve got content that I’ve prepared and am preparing, I would also like to address any topics, concerns, and questions you have about providing loving caregiving to our loved ones with Alzheimer’s Disease and dementias.