The first consideration when moving a loved one with dementia into your home, or even if they’re just coming to visit, is often how to make it safer, for example, how to decrease the risk of falling. Once you’ve overcome that hurdle as best you can, your focus can shift to how to make your home a more comfortable and calming place, with less risk of agitation.
There are many forms and stages of dementia. If you have the objectives of comfort, calm and ease of care in mind, you can adjust the following suggestions to what will doubtless be an ever-changing situation as your loved one’s dementia progresses. Try the things you think will work for you and your family member now, and vary your solutions as needed.
Reduce stimuli in the person’s environment:
- Declutter your home. A simplified environment with clutter-free surfaces is more conducive to keeping emotions on an even keel, and the reduced confusion caused by removing clutter will help everyone in the family.
- Eliminate unnecessary noise. Sensory overload can cause distress. The goal of a peaceful atmosphere that will keep your family member calm and unruffled can often be achieved without the noise of a television, or the sounds from things like wind chimes or dogs or the sounds of traffic. For sounds that can’t be eliminated, a white-noise machine might help to mask them. Carpets, cushions and curtains absorb background noise.
- Playing music from your loved one’s past may actually be calming and help to stimulate memories associated with it. Try creating a playlist from the era when your loved one was young, and have them listen to it through ear phones.
- Adjust the light. Eliminate annoying glare from the windows, while letting in as much natural light as possible. A light-related challenge is the phenomenon known as “sundowning.” When the sun sets, it may prompt feelings of depression, anxiety and even hallucinations in those with dementia. Toward the end of the day, increased artificial light can actually help minimize the effects of sundowning. Put a few lights on a timer to eliminate the need for to remember to turn them on. This also keeps changes in light more consistent from day to day. Leaving a nightlight on can help prevent disorientation and the risk of falling in the dark.
Provide a personalized indoor space. Give your loved one their own place to sit and doze. A recliner, comfortable chair with an ottoman, or a couch where the person can settle in on each visit will help them to feel more comfortable and at home. Try to make this special seating area out of the way of household hustle and bustle, yet still within view. That way, your family member can relax and not be in the way, but you can keep an eye out and ensure his or her safety.
It’s handy to have a side table nearby where you can place an item or two to keep your loved one occupied. Each person will enjoy different things—books, photo albums, telephone. Try various items but don’t overload the person with too much stuff. Keep the space clutter-free.
Provide a safe outdoor space. When the weather is good, your loved one will enjoy the fresh air, the sounds of birds, the sight of flowers and trees, the warm sun and maybe a little exercise. Bird feeders may attract birds that are enjoyable to watch. Enclose the area if your loved one is a flight risk. Partial sun or shade is preferable to full sun. A chair under a tree or an umbrella can help to control the brightness of the light. You might want to set a timer so you don’t leave him or her out there too long.
Adjust flooring where possible.
- Remove unnecessary rugs.Besides being a tripping hazard, rugs can cause confusion and anxiety. A person with dementia may see a rug as a hole and try to walk around it or jump over it, or may simply freeze, not knowing what to do. A necessary rug should have a low color contrast with the floor.
- When replacing the carpet, install the same color throughout the house, to lessen confusion.
- Avoid shiny or reflective flooring. It may be perceived as wet or slippery, and the person may be afraid to walk over it.
Remove nearby mirrors and cover reflective surfaces. If the person you care for doesn’t recognize their own reflection, they may think that the face in the mirror or the person reflected in the window at night is a stranger and be frightened.
Label drawers, cupboards and doors to show what’s inside them. For example, you could put a photo of the toilet on the bathroom door, a photo of a glass on the cupboard, or the word “spoons” on the drawer that contains the silverware. Transparent cupboard doors can be a great help as it’s easy to see what’s inside.
Purchase household items that are specifically designed for people with dementia. Cups with two handles, clocks with large LCD displays, telephones with big buttons and devices to open jars are examples. There are several websites that sell daily living aids, such as the Alzheimer’s Society online shop.
Be sure tables are stable and have round, smooth edges. The height should permit food and drink to be seen easily and a wheelchair to fit underneath, if needed.
Keep a change of clothes handy. Have one drawer for this purpose with at least one pair of pants and two or three pairs of underwear. A clean shirt or blouse may also help to prevent embarrassment when an accident or spill occurs.
Stimulate memories through pictures. If you have family photos on display in your home, don’t put them away until you see how they affect your loved one. If you don’t have pictures up, think about creating a grouping of pictures someplace where they can be enjoyed together. Creating photo albums or scrapbooks that you can look at together and talk about can also be enjoyable, even if your loved one doesn’t remember the people or places in them. Take photos of you and your parent to help you remember the special times you had together.
Monitor personal comfort. Because a person with dementia might not always be able to express how they feel, check for pain, hunger, thirst, constipation, full bladder, fatigue, infections and skin irritation. Make sure the room is at a comfortable temperature. Be sensitive to fears and to the frustration of not being able to express what is wanted.
Try to keep your emotions in check and your voice calm and steady. Avoid arguing, correcting or criticizing. It’s better to be happy than to be right!
Research has shown that hospital pre-discharge planning that includes the help of families and caregivers can dramatically improve patients’ health, reduce readmissions and decrease healthcare costs. Whether the discharge is to home, a rehab facility, assisted living or a nursing home, patients, family caregivers and healthcare providers all play a significant role in maintaining a patient’s health after discharge. Unfortunately, the process and quality of discharge planning are not consistent throughout the healthcare system. If you are a caregiver, you must be the advocate for the patient and for yourself.
Who is responsible for discharge planning?Only a doctor can authorize a patient’s release from the hospital, but the process of discharge planning can be completed by a social worker, nurse, case manager or other person. The best scenario is when discharge planning involves a team.
The basics of a discharge plan and related discussions include:
- Evaluation of the patient’s condition and likelihood of improvement by qualified personnel
- Discussion with the patient and his caregiver about the types of care and equipment needed
- Planning for transfer to another care facility, or to the home and what help the patient needs
- Determining if family caregiver training or other support is needed
- Referrals to home care agency and/or appropriate support organizations in the community
- Scheduling follow-up appointments or tests before leaving the hospital
- Reconciling pre-hospitalization medications with the post-discharge list for duplications, omissions or harmful side effects, and a discussion of who will administer medications.
Why is all-inclusive pre-discharge planning important?
Pre-discharge planning can decrease the chances that your loved one will be readmitted to the hospital, help in various aspects of recovery, ensure medications are prescribed and given correctly, and help prepare you to take over or get help for all the aspects of your loved one’s care. Patients are released from hospitals “quicker and sicker” than in the past, making it critical to prepare and arrange for good care after release.
The caregiver’s role in the discharge process
As a family caregiver, you are the “expert” on your loved one’s history. You know about the patient and about your own abilities to provide care in a safe home setting. During discharge discussion should include your ability to provide care. You must be upfront about physical and financial limitations, or other obligations such as a job or childcare that determine the time you have available. It is extremely important to tell hospital discharge staff about your limitations.
Some of the care your loved one needs might be quite complicated. Dakota Travel Nurse Home care will come to the hospital and evaluate special care needs, such as medication administration, wound care, post surgical care or catheter care, transferring someone from bed to chair or other needs you will need help with.
If your loved one has memory problems caused by Alzheimer’s disease, stroke, or another disorder, you will need to be a part of all discharge discussions. In addition to impaired memory, older people often have hearing or vision problems or are disoriented when they are in the hospital. Care instructions can be difficult to comprehend. They need you to be a second pair of eyes and ears.
Because people are in a hurry to leave the hospital or facility, it’s easy to forget what to ask. This link includes an extensive list of questions that you can print and take with you.
Help you may need at home
Some common care responsibilities you may have to handle or get help with for your family member after he or she returns home are:
- Personal care: bathing, eating, dressing, toileting
- Healthcare: medication management, physician’s appointments, physical therapy, wound treatment, injections, medical equipment and techniques
- Emotional care: companionship, meaningful activities, conversation.
- Household care: cooking, cleaning, laundry, shopping, other chores
You don’t have to handle all the care yourself! Community organizations and home care agencies like DTN Home Care can help with services such as transportation, meals, support groups, counseling, and respite care. The discharge planner should be familiar with these types of support, but if not, your local senior center or a private case manager could be helpful. Family and friends also might assist you with home care.
If you need to hire paid in-home help, you have some decisions to make. If hiring decisions are made in a hurry during hospital discharge, you might be handed a list of agencies to decide from, but often without additional information. If you know you will need this type of help, make time to research your options while your loved one is being cared for in the hospital.
You may have a choice between hiring an individual directly or going through a home care or home health care agency. If the help is “medically necessary,” i.e., prescribed by the doctor, and therefore paid for by Medicare, Medicaid or other insurance, they could determine covered agencies. Home care agencies take care of all the paperwork for taxes and salary, substitutes will be available if the worker is sick, and you may have access to a broader range of skills.
Discharge to a facility
If the patient requires discharge to a rehab facility or nursing home, transition planning should include continuity of care, patient’s current health and capabilities, medications review, and help selecting a suitable facility with available space. The sooner you can look at facilities and make a decision, the better. Once when my dad was unexpectedly being discharged from a hospital, I was told I had 4 hours to find a place for him and simply handed a list of numbers to call.
There are online sources of information that rate nursing homes and other facilities. Convenience is also a factor. You need to be able to easily get to the facility, but you may have to sacrifice your convenience for the sake of better quality care.
Paying for care after discharge
Insurance, including Medicare, does not pay for all services after a patient has been discharged from the hospital. However, if something is determined by the doctor to be “medically necessary” you may be able to get coverage for certain skilled care or equipment. Check directly with the hospital, your insurer or Medicare to find out what is covered and what you have to pay for. Keep records of your conversations.
Multiple studies have explored the importance of effective discharge planning and transitional care, and have highlighted the very real benefits in improved patient outcomes and lower rehospitalization rates. Dakota Travel Nurse Home Care personnel are qualified and available to be part of your pre-discharge team. Call us to arrange for an in-hospital, in-care-facility or in-home evaluation. You will be pleasantly surprised at the skilled and affordable care we can help to provide for you and your loved one.
I suffered for years from painful bunions on both feet. My podiatrist told me that my bones would heal more quickly if I had surgery before age 65. However, because I was working full-time, I risked it and waited to have surgery on my left foot until I retired at 66 and on my right foot a year later. Although the recovery for each was about 4 months, I would do it all again to walk and stand pain-free, as I do now.
At age 78 and in the early stages of vascular and Alzheimer’s dementia, surgery and anesthesia would be more risky for my husband. His badly deformed right foot would require more complicated surgery with a longer recovery period. I think my success story motivated him to risk the surgery, in spite of opinions pro and con. I felt I was in a no-win situation. If I refused to allow him to have the surgery, I would be responsible for his not having a chance at a more normal foot. If I allowed him to do it knowing about his physical and mental difficulties, I could be responsible for months of inactivity and caregiving that might prove to be useless.
He first tried the less invasive surgery of having his second toe removed. It was being pushed up by his big toe moving under it, and it made wearing almost any shoe uncomfortable. The podiatrist assured us he had done it “hundreds of times” with great success. The surgery was performed with local anesthetic in an out-patient setting. At first, it seemed to solve the problem, but then his big toe began to move over even farther. He went to a second podiatrist who was willing to try extensive bunion surgery.
It is common for people with dementia to not be aware of what they can’t do or are unable to figure out. My husband had already been through 2 rounds of physical therapy for balance and walking problems related to his cognitive challenges and the idiopathic neuropathy in his feet. I knew he could not balance on one foot, and that post-surgery, following non-weight-bearing instructions would be difficult for him.
As someone who had been through it, and as the person who would be his primary caregiver, I told him he needed to prove to me that he could move from bed to bathroom or chair using a scooter and/or walker during the 6-8 weeks of non-weight bearing the Dr. prescribed. I begged him to practice his balance and strengthen his left foot, to no avail. He was sure he would be able to do what was required after the surgery.
Our situation is not that unusual. The caregivers at DTN Homecare have had clients with a variety of wounds or surgeries who do not or cannot follow physicians’ orders so they can heal properly. What to do?
If surgery is not optional or a wound is the result of an accident, a caregiver has no choice but to try everything possible to encourage and enable the injured person to follow the prescribed recovery instructions. The physical therapist neighbor who I called in a panic the evening after the surgery showed me by example that praise for what is done right often has better results than criticizing what is done wrong. He also said that people with cognitive difficulties learn slowly by repetition. I wondered aloud how repetition could work when I couldn’t get my husband to make the correct moves even once!
If surgery is optional, seek multiple opinions, weigh the risks against the benefits, and learn from my experience with my husband, where applicable.
Another complication was my husband’s neuropathy. Until after the surgery, we did not realize how far it had progressed. He felt no pain! He didn’t take one pain pill after the surgery, when most people experience throbbing, stabbing pain for at least 2-3 days. What at first seemed like a blessing contributed to his difficulty in keeping weight off of his foot. He couldn’t use pain as a guide as to when he was putting weight on his foot or even to know when he had his weight on the toe or the heel of the boot. Because of his cognitive problems, every time he moved from one place to another, it was like he was doing it for the first time, trying to figure out how to use the walker or the scooter without putting weight on his bad foot.
The results of being unable to follow instructions showed up quickly. When we saw the Dr. after 2 weeks to have his stitches removed, my husband’s big toe was already moving back to where it had been before surgery. The doctor showed me how to wrap his foot and toe in an Ace bandage so it would pull the toe more toward a straight-up position. This also proved to be a setback. The bandage rubbed on the toe at its base, but my husband couldn’t feel it. One day as I was helping him shower, I noticed that his surgical sock was wet. I removed the Ace bandage and was horrified to find a blister about one-half inch wide all around the base of his toe. In some places the skin had already been rubbed off and the wound was raw and weeping! I immediately called the Doctor’s office, and they said to come right in. The Dr. removed the rest of the skin and the nurse showed me a 7-step process to dress the wound that had to be done every day!
Neuropathy causes nerve damage that can also affect the length of time it takes wounds to heal. Our next visit, when the first X-rays were to be taken, was already scheduled in 2 weeks (6 weeks out from surgery). After two weeks, the wound around my husband’s toe was only partially healed, but it didn’t hurt, either. I was instructed to continue changing the dressing daily.
The X-rays showed that, in spite of the plate and the screws in his foot, the big toe bones were close to being in almost the same position as before surgery. The Doctor said the cause was two-fold: 1) the lack of the second toe provided space for the big toe to move, and 2) my husband’s inability to keep his weight off of his foot. He advised that nothing more be done, as the results would likely be the same unless his big toe were to be fused, making walking more difficult.
At the end of the 6-week visit, the doctor gave us a page of instructions as to how to gradually increase weight-bearing over the 4-week period before our next visit. Again, because putting full weight on his foot didn’t cause him any pain, after one week, my husband was walking around the house without a walker or a cane to help keep any of the weight off of his foot. It didn’t matter what I said, or how I demonstrated the right way to follow the instructions, he couldn’t do it and/or didn’t feel the need.
At 10 weeks, we saw the Dr. again. New X-rays looked about the same as the ones 4 weeks previous. The Dr. was not happy with the results and neither were we, but he did not advise any more surgery unless the foot developed friction sores or other extreme discomfort. We’ll have to keep an eye on it, because he probably won’t feel his shoe rubbing on his foot, just like he didn’t feel the Ace bandage. He was told he could go without the boot and wear a regular sneaker with an arch support insert. I was given new instructions for caring for the wound that still hasn’t healed. PT was prescribed to reteach walking in the correct way for balance and strength building. We’re not done yet. If we could go back, would we do it again? NO!
You can’t force a person with cognitive dementia to follow post-surgical or post-injury instructions that require planning and “problem solving before movement,” even if you are with your loved one or client almost every minute. Constant nagging is a waste of emotional energy. An in-home physical therapist might be able to help, if you can qualify or pay for one. Dakota Travel Nurse Home Care will give your loved one an in-home evaluation to see what types of help you need and/or qualify for.
In Part I of this blog, I gave a brief review of what took place during the last 6 weeks of my dad’s life and included a list of some things that can be done to make the last stages of a loved one’s life easier for caregivers, family members and the person who is nearing the end of his or her life. In Part II, I’ll review what I and my siblings have gone through in the almost 3 months since Dad died on Jan. 4 at age 97.
Mom died 20 years ago. We were happy with the mortuary that took care of her, so the first task upon arriving at Dad’s senior living apartment late that snowing night was to call them. They said they would be there within an hour, and they were. While waiting, we began notifying other family members.
Note: An important thing to be aware of is what the laws of your state are and the policies of the care center–if you are using one–regarding authenticating a death by natural causes. In Utah, where I live, if Dad had not been on hospice care with a Dr. assigned to him, the center would have had to call 911 and have paramedics take him to the hospital so a doctor there could verify that they were not in any way responsible for his death. This was one reason we were repeatedly encouraged to put him on hospice. That would not have been true had he died in his own home.
The Funeral or Memorial Service
The following day, immediate family members in the area met at the mortuary to discuss our plans for Dad’s care and services. They had determined the night before that we wanted embalming to be part of that care. (The family needs to have agreed before a loved one dies whether the choice is embalming or cremation.) I was relieved to find out that the mortuary notifies Social Security of a death and also orders death certificates. Whoever is handling the estate should have some idea of how many to order, as there is a charge for each one. Other things discussed were:
- The date, time and location for a wake/viewing and funeral.
- Who would provide program information, formatting and printing for the funeral.
- If an obituary was to appear in the paper &/or online and when. The obituary could be written and agreed upon by family in advance of a loved one’s death.
- If there would be graveside services.
- Because Dad was a Veteran, if we wanted military honors to be part of the services (a flag draped over the casket, members of the armed services to be at the graveside, etc. We couldn’t find Dad’s WWII discharge papers, so a flag was our only option.)
- Our choice of a casket (also something that can be done ahead of time) and a headstone. (Because Mom preceded Dad in death, we already had a headstone in place. His death date just had to be added).
Depending on your religious and family traditions, other things might need to be decided, like who will participate in the funeral, be pallbearers, etc. Dad had made some funeral plans years ago, but not all of them could be carried out. All 9 siblings were involved in those decisions, which became a little tricky at times, but fortunately, everyone agreed that when they were over, Dad’s viewing, funeral (church service) and graveside service were everything they’d hoped.
After the services, came the tough decisions regarding what to do with Dad’s possessions and monetary assets. The first thing we had to do was to move his furniture and belongings out of his care center apartment so that rent charges would end. There were also many possessions still in the condo he had shared with his wife but left behind when he moved to the care center. Fortunately, everyone agreed to a random order of selection that gave each sibling a chance to take turns choosing the things they &/or their children wanted. The things no one wanted were donated to charity. We did not have a home to sell.
Because Dad had set up a family trust with me and one of my brothers as the trustees/executors of the estate, and he also had a Prenuptial Agreement with his third wife and a Will, some things went more smoothly than they might have. I had been handling all of Dad’s finances for some time, and had consolidated his accounts and assets as much as possible. We are still relying on the help of our investment counselor and the accountant who has prepared Dad’s taxes over the years. It may be necessary for you to involve an attorney, as well, depending on your family’s situation. Even though Dad only lived for 4 days of 2017, his Social Security and annuity payments for January were still considered “his.” We will have to file State, Federal and Estate returns for 2017, so some of his assets have to be held back to pay taxes and administrative and accounting fees. As a family, we are so fortunate that Dad left us with an inheritance rather than debts. That would involve another set of challenges.
Last week I finally got all of the required tax forms and information for 2016 to the accountant. We’ve distributed most of the monetary assets, making a distinction to the beneficiaries as to what amounts will be taxable and what will not, so money can be set aside by those individuals to pay taxes as their tax bracket dictates. There will still be a meeting with the accountant notifying him to whom the assets were distributed, so he can file K-1 (Estate Tax) forms for each one at the end of this tax year, and so 2017 tax forms can be completed as needed. I still have thank you notes to write and mailing addresses to change. Other than that, we are left with just the many memories of our Dad, the long life he lived and the hope and faith that we will all see him again when it is our turn to pass on.
Summary: (Do as much as you can before your loved one dies.)
- Select/Call the mortuary of your choice.
- If a Dr. is not present, know the laws of your state for authenticating the cause of death.
- Meet with the mortuary to plan services and burial/cremation, order death certificates, verify Vet status, select a casket and headstone where applicable.
- Write an obituary and arrange for publication or posting on a website.
- Plan funeral/memorial/graveside services.
- Find important documents: trust, will, POA, living will, life insurance policies, annuities, etc. (Where possible, help your loved one get their affairs in order and these documents created/located while they can still participate!)
- Devise a system for amicably dividing up possessions between family members.
- Use professional help, as needed, for handling monetary assets/debts and tax issues (financial planner, investment counselor, accountant, attorney).
- Notify the post office and others who will be sending mail to the deceased where to send it now.
My 97-year-old father died on January 4, 2017. If you regularly follow this blog, you already know quite a bit about his struggles to stay alive the past two years. On most days, he soldiered bravely on, saying his goal was to “make it to 100!” But after Thanksgiving, he began a steady decline, making it more and more difficult for him to eat, breathe and get around. He frequently said “I’m done!” and “Just send me to the Other Side.” He also said he knew “We don’t get to choose when we go!”
Knowing he had lost the will to live, and as the family member with the POA over his care, I had some difficult decisions to make. The senior care center where he lived helped me connect with a Dr. who made “house calls” and also worked with a Hospice provider. Once your loved one is on hospice care, a Dr. will be part of the team, but because Hospice would stop Dad’s diabetic care, which he was getting through a home care agency, I put off switching immediately from Home Care to Hospice.
Dad, the doctor and I sat together and updated Dad’s Care Provisions. Dad was adamant that there would be “no more hospitals,” so we added that to DNR and “no extreme measures,” along with a provision for no antibiotics. Dad was highly prone to aspirational pneumonia, which he’d had 7 times, so it was presumed that would be his cause of death. He was aware of what trying to save him from that would involve, and decided that he wanted to die at home. A copy of the provisions was hung on his door, where it would be easily accessible.
I alerted immediate family members to Dad’s steady decline and his wishes, and most of them came to visit with him sometime during the Holidays while he was still alert and able to recognize his 9 children. He was able to be at the home of one of my brothers for Christmas, and we helped fill one of Dad’s last wishes by taking him on 2 drives to see Christmas lights.
The aides and CNAs at the care center were made aware of Dad’s care provisions and failing health, and they increased their surveillance and assistance. Dad was only in pain when he tried to get up and walk, so we refused opioid pain killers for the time being, as we knew they would increase his risk of falling.
On Mon. Jan. 2, I visited Dad at his dinner hour and was told that he had eaten almost nothing all day. He also seemed to be hallucinating, seeing and hearing things that weren’t there. That was a symptom when he’d had pneumonia before. Because he wasn’t eating, insulin for his diabetes was no longer an issue. The next morning I called the hospice nurse and told her we were ready to switch. Before I could get myself over to Dad’s apartment, hospice people were there setting up a hospital bed and arranging for their own oxygen supplier to provide Dad’s 24/7 oxygen.
Although hospice care doesn’t provide medication to effect a cure, they will provide whatever is necessary for comfort care, and oxygen is considered one of those things. The nurse also said that even though he wasn’t in pain, morphine would help to relax his muscles and blood vessels, making it easier for him to breathe. Dad’s breathing became more labored throughout the day, and when the morphine was finally administered, for a while there was a noticeable change for the better. Even though he wasn’t talking, the nurse said he probably could still hear, so we gave family members who couldn’t get there a chance to say goodbye with the phone to his ear.
We were told that Dad could live for several days like this, so when he didn’t seem to be responding at all, we went home that evening to try to get some sleep. We came back the next morning and “sat vigil” all day. By evening, even with the morphine, his breathing was very labored. We were again advised that he could live through the night, and that sometimes a dying person will wait until their loved ones have gone before they let go of this life. Because a snow storm was threatening to make travel impossible, I slowly made my way home up slippery hills. I had just gotten into bed when the Care Center called to say “He’s gone.” I made my way back through the snow, and found the hospice nurse already there. She assured me that I didn’t need to feel bad about not being there at the moment of his passing, that maybe I had to go before he could “go,” too.
I felt more relief than sadness to see that Dad was no longer struggling to breathe, and my religious beliefs helped me to know that he was in a “better place,” freed from his worn out body. However, I know that everyone experiences the death of a loved one and grieving in their own way.
In a future blog, I’ll share my experiences and what I learned about what needs to be done after a loved one dies.
- Update your loved one’s Care Provisions. Put the document where it can be easily seen.
- Ensure a family member has the legal right to make medical decisions for your dying loved one.
- Talk with a Dr. about certifying the need for Hospice or comfort-only care, and decide who you will call. If your loved one has Home Care, that agency might be able to provide Hospice Care.
- Keep family members updated on your loved one’s condition, and when they can visit.
- Allow comfort care, as needed. This is not the time to worry about drug addiction.
- Be aware that refusing to eat and difficulty breathing can be normal end-of-life signs.
- Get a doctor’s confirmation that it’s time to follow the dying person’s last wishes, whether they be to maintain life in any way possible, or to take no extreme measures.
- Even though he or she can’t respond, talk to your loved one. Hearing can be the last sense to go.
- Don’t feel like you have to be there the moment your loved one dies. Sometimes they won’t “leave” until you do.
By Marti Lythgoe, DTN Home Care Writer/Editor
Many seniors are not eating a balanced diet as they age, no matter whether they live on their own, with family or in a senior living facility. Seniors who live alone are at increased risk because there is no one to observe their eating habits. There are many causes for seniors who are under-eating, over-eating or not eating nutritious meals.
By the time he was 97, my father had multiple problems that made it difficult for him to eat a balanced diet. During the last few months of his life, the only thing he ate willingly was strawberry ice cream. The assisted living center he called home provided 3 nutritious meals a day and snacks in between meals on request. They were very accommodating with his diet–limiting sweets and carbs, cutting everything into small pieces and eliminating foods known to be a choking or swallowing hazard. However, unless a family member was there with him at meal time to encourage him to eat or even help to feed him, he rarely ate vegetables and expended most of his energy and appetite on small bites of protein and the ice cream that easily slipped down his throat.
Causes of poor nutrition
Some of Dad’s problems could be similar to what’s causing your elderly loved one to under-eat, over-eat or not eat a balanced diet. Watch for these risks and hazards interfering with a balanced diet, and consider what can be done to prevent or get around them:
- Poor appetite – not motivated to eat: Many seniors’ sense of smell and taste diminish with age. Nothing looks good or tastes good, and often times there’s no one there to direct them toward healthy choices and encourage them to “eat to live.” They often don’t associate what they are eating with how they feel or could feel. They don’t even feel hungry. We continually reminded Dad of the relationship between his diabetes and his need eat in order to increase his energy level.
- Nothing looks good: Especially if someone else is fixing them food they’re not used to, seniors might not recognize the food they’re given and resist trying it. Even when familiar food was cut into small pieces for Dad, he would often say, “What in the world is that?” We would have to tell him before he would try it. When we were growing up, we had a large vegetable garden and ate meat sparingly. But somehow in his later years Dad lost his appetite for anything green and insisted that at his age he shouldn’t have to eat vegetables! Broccoli was the worst!
- Swallowing problems, choking and food aspiration: Just like other parts of our body, throat muscles and valves can wear out and cease to function normally. Food may go only part of the way down and have a hard time getting into the stomach. Problems with the trachea (windpipe) can include narrowing, inflammation and even failure to close while swallowing. Problems with throat muscles and valves can cause food aspiration and choking. Seniors become fearful of eating for fear of choking to death.
- Fatigue—too much effort, lack of eye-hand coordination: Sometimes an elderly person feels too fatigued to get out of bed to eat breakfast, starting a downward cycle of energy loss. Even the act of getting food to the mouth or chewing can seem like too much of an effort, especially when not driven by hunger. Embarrassment over spilling can also be a deterrent.
- Missing or broken teeth/chewing problems: Some seniors have missing or broken teeth that make chewing difficult. Others have dentures, but find them uncomfortable and not as easy to chew with as their original teeth. It may be difficult to get them to brush regularly, but regular trips to the dentist for cleanings and smoothing of rough edges can help.
- Medication side-effects: Sometimes medications can affect appetite or interfere with digestion. Check with the Dr. to rule this out as a cause and to determine what supplements might be helpful.
Strategies to Try:
- A 91-year-old friend of mine likes foods that are spicy or sour. Try adding herbs and spices to food, or try foods that are naturally more flavorful.
- If your loved one lives in a facility and can go out, try taking him or her to a restaurant or to your house for a home-cooked meal—someplace where food is likely to smell and look different. Sometimes we brought in take-out in for Dad. He ate a huge meal at my house on Thanksgiving, but he was too weak to come often.
- A speech therapist can help to diagnose swallowing or aspiration problems. Stretching the trachea or esophagus may help. Swallowing exercises and strategies can sometimes shorten choking episodes. Avoiding foods with crumbs like toast, breading, ground beef or cookies, may eliminate some hazards. A Dr. may prescribe drinking only thickened liquids and cutting food into small pieces. Having a caregiver present at meals to act as a coach can often help. Dad had a hard time remembering the strategies he was taught.
- A glass of juice or a protein drink consumed while still in bed might jumpstart someone without the energy to get up or move to a table. Sometimes help with eating is needed. Soup or stew could be served in a mug, enabling the food to be brought closer to the mouth without spilling. More activity can equal more energy and enhance appetite. An in-house physical therapist can suggest low-stress exercises appropriate to a person’s age and health.
- If your loved one is in a facility, talk with the staff to see what they’ve observed. Join him or her for some meals to see for yourself what is happening. Whole-meal drinks like Boost or Ensure can supplement a diet that is poor in nutrients.
- Hire a home care aide who can shop and cook and sit with your senior during meals. Sometime loneliness or depression can cause a person to not want to eat. Dakota Travel Nurse Home Care provides home health aide services to individuals who need assistance with activities of daily living. Services can be provided as little as one hour per visit or up to 24 hours per day. Home Health Aides can assist with meals and companionship and a whole list of other things.
Call Dakota Travel Nurse Home Care today for a free, in-home evaluation of services needed. 701.663.5373
by Marti Lythgoe, DTN HC Writer/Editor
Cold and snowy winter weather can cause health and safety concerns for seniors and their caregivers. If you worry about your loved one being alone, homebound or going out in the cold, here are 10 risks family members and home health aides should watch out for, and related tips for prevention.
- Falls outdoors. Many seniors have difficulty walking due to arthritis, results of a stroke or other illnesses. A single fall can cause a life-threatening injury. To help avoid falls, seniors should wear appropriate shoes outdoors. Make surfaces less slippery by putting road salt, sand or kitty litter on sidewalks and driveways. Whenever possible, get help with chores that involve being outdoors.
- Hypothermia. An elderly person who goes outside in winter without proper clothing can quickly fall victim to frostbite or hypothermia (body temperature below 95 degrees [35° C] and can’t produce enough energy to stay warm.) Inadequate indoor heat also can cause hypothermia. Keep home temperatures above 65 degrees and dress the person in layers. Do not rely on shivering alone as a warning sign, since seniors tend to shiver less or not at all as their body temperature drops. Call 911 if you think someone has hypothermia.
- Frostbite can cause damage to the skin and even to the bone. It usually affects the nose, ears, cheeks, chin, fingers, and toes, and can even result in loss of limbs. Seniors with heart disease and other circulation problems are especially at risk. Prevention includes covering up all parts of the body when going outside. If skin turns red, dark or starts to hurt, go inside right away. If frostbite occurs, place frostbitten parts of the body in warm (not hot) water, and call for medical help.
- Carbon monoxide poisoning. If your loved one’s home is heated with a fireplace, gas furnace or gas-powered space heater, invest in carbon monoxide detectors. They can be purchased at a home improvement store for as little as $30. Carbon monoxide in the air can displace the oxygen in the blood stream and cause headache, dizziness, nausea, convulsions and even death within two hours. The effects can be even faster for people with heart or respiratory illnesses.
- High blood pressure and heart attacks. Cold weather causes blood vessels to constrict, which increases the risk of heart attack for people with heart disease or other conditions that strain the heart’s ability to pump blood. The heart has to work harder to maintain body heat, while falling temperatures may cause an unhealthy rise in high blood pressure, especially in seniors. This is another reason to keep the elderly inside and warm.
- Influenza can more easily result in pneumonia in seniors. Flu and pneumonia vaccines, while not 100% effective in preventing those illnesses, can reduce the severity of the symptoms and protect against complications. Vaccines are strongly recommended for persons 65+ years old and those who suffer from chronic health problems such as heart disease, respiratory problems, renal disease, diabetes, anemia, or any disease that weakens the body’s immune system. Because the influenza vaccine is only effective for one year and viruses vary annually, it is necessary to get a flu shot every year. It takes about two weeks to develop full immunity.
- Painful joints. While many people with arthritis say their joints become more painful and stiff when the weather changes, there is no evidence that cold weather causes joint damage. Mild daily exercise can help. For example, indoor swimming is easy on the joints. Staying indoors doesn’t have to mean being inactive. Keep your senior in shape by walking in place, using a stationary bike or working out with a fitness video. Daily stretching exercises can help maintain flexibility. Check with your physician before beginning any exercise program.
- Vitamin D deficiency. Being indoors and out of the sun most of the time eliminates a source of vitamin D. Encourage eating foods high in Vitamin D, such as milk, grains and seafood, or ask your doctor about a vitamin D supplement.
- Seasonal Affective Disorder (SAD) & depression. A lack of natural light can cause depression in both young and old alike. As the elderly are more likely to stay indoors, keep lights on, open curtains and blinds to let in natural light, and encourage the person to sit close to a window. The winter months and bad weather also can lead to social isolation. Help your senior to spend more time with family, friends and neighbors, and when weather makes visiting difficult, call them for a chat.
- Dry skin. Heated air can be drying. Because dry skin can lead to other skin complications especially in diabetics, it’s important to monitor carefully. Shower with warm, not hot water. Limit showers to 5-10 minutes. Gently pat skin dry. Use a gentle cleanser and a thicker moisturizer that will help skin retain its moisture. Run a cool mist humidifier in the bedroom.
Winter poses challenges for seniors, but with awareness and planning, they can stay healthy and be ready for spring. Dakota Travel Nurse Home Care can help aging adults maintain health and independence by providing companionship, meal preparation and personal care. For more information, call 701.663.5373.
Alcoholism is a disease. Like any disease, it needs to be treated. Alcohol addiction complicates being a caregiver and makes the role much harder and more stressful than caregiving already is. It increases the clients’ needs, comprises their health and complicates medical conditions. Alcoholism can be the cause of a need for care in the first place. Because the aging process affects how the body handles alcohol, the same amount of alcohol can have a greater effect as a person grows older. Caregivers have to address all the stresses and added health problems of continuing alcoholism, as well as dealing with alcoholics who can be irrational, unreasonable and often dishonest about their addiction.
Talk About It
Dealing with an aging parent who has an alcohol addiction problem isn’t quite like any other challenge. You have to cope day after day with someone who can be kind and communicative one moment and raging and incoherent the next. You have to try to keep a family member safe who could stumble and fall when drinking alone or pass out in an alcoholic stupor.
Since most alcoholics don’t admit they have a problem, it can feel like trying to help someone who refuses to be helped – or who doesn’t acknowledge needing help in the first place. Sometimes all you can do is to connect with others in groups like Al-Anon who have been there, and learn and receive comfort from their shared experiences. It may be difficult to speak openly about a loved one’s alcoholism and the challenges of trying to keep them safe, but it can be very comforting to learn you are not alone and that you are not responsible for curing the addiction.
Judgment and preaching do not help when caring for an addicted elder. Try to find a physician who views addiction as a medical condition and will treat the person with compassion and likely, medication. Don’t be ashamed to tell a doctor that your elderly parent has a substance abuse problem. People can die from untreated withdrawal, e.g., during hospitalization, when medical intervention could have made them comfortable, or even saved them.
Ask your doctor or pharmacist if drugs are safe when combined with alcohol. Many medicines—prescription, over-the-counter, or herbal remedies—can be dangerous or even deadly when mixed with alcohol. They can increase the negative effects of alcohol consumption.
Taking Care of Parents Who Didn’t Take Care of You, a book by Eleanor Cade, addresses the dilemma of adult children of abusive, neglectful or absent parents who have made the choice to care for their elderly parents. “The challenge,” says Cade, “is for caregivers to make sure they are responding to the situation, not their emotions. It is important to be flexible enough to recognize that negative thoughts and positive actions can co-exist. Being flexible also means adapting and changing our caregiver role as needs be, understanding that good caregiving requires diplomacy, outside support, and a practical network of assistance.”
Take good care of yourself. Caregivers need to exercise, eat nutritious meals, abstain from using tobacco, alcohol, and drugs, get enough sleep and make time for partners, children, and friends in order to keep their lives in healthy balance.
Establish boundaries with elderly alcoholic parents, other family members, and yourself. For example, this could mean limiting visits, not taking phone calls after a certain time, and deciding for oneself what is reasonable or possible as you go about caring for this person. Many elders will tell you that alcohol is their “only pleasure.” And for some it is. Don’t let this affect the care you know they need to have. Just remember that compassion in treating the symptoms, or controlling the alcohol or drug amounts to keep them from falling, are often the only choices you have.
If you need help in caring for an elderly parent, contact Dakota Travel Nurse Home Care at 701.663.5373 for a free evaluation.
- Family Caregiver Alliance Web site at http://www.caregiver.org/.
- Caregiving.Com at http://www.caregiving.com/
As the medical power of attorney for my 97-year-old father, I am often asked if I want to switch him from In-Home Care to Hospice or Palliative Care. I have had to weigh the differences and try to decide what is best for him as he ages and goes through various health crises.
Dad currently lives in an assisted living center that provides a high level of care for its elderly residents, but we outsource his oxygen provider, and we have a Home Care Agency that handles his diabetic care and comes in three times a week to shower and shave him. These services are paid for by Medicare. My primary dilemma has been over his diabetic care, which is not included with hospice and strictly palliative care. In Utah, he could switch to hospice care at any time and stay where he is, but that varies from state to state.
Perhaps you or a loved one will be put in the position of having to make a decision similar to mine. When that time comes, the more information you have about each type of care, the easier your decision could be regarding what will provide the services you will benefit from the most. There are many resources you can turn to for information, including DTN Home Care, but here is a brief overview to get you started.
What are hospice and palliative care?
Hospice care provides medical services, emotional support, and spiritual resources for people who are in the last stages (six months or less to live) of a serious illness, such as Alzheimer’s, cancer or heart failure. Hospice care also provides support for family members that help them manage the practical details and emotional challenges of caring for a dying loved one. Hospice and palliative care both focus on addressing issues causing physical or emotional pain, or suffering. The goal is to keep you comfortable, and to improve your quality of life vs. continuing with treatment to prolong your life.
Some hospice providers offer palliative care as a separate program or service, which can be very confusing to patients and families. Click on this link to access a list of questions that includes answers to common questions about the difference between hospice and palliative care.
What services are provided under hospice care?
Common hospice services include:
- Basic medical care, with a focus on pain control and providing comfort measures.
- Access to a member of your hospice team 24/7.
- Medical supplies and equipment that are needed for comfort but not curative care.
- Counseling and social support to help with psychological, emotional, and spiritual issues.
- A break (respite care) for caregivers, family, and others who regularly provide care.
- Volunteer support, such as preparing meals and running errands.
- Counseling and support for family members after a loved one dies.
Why choose hospice care?
During the last stages of a serious illness, many patients and caregivers feel that they have lost control over their lives and over what will happen to them or their loved ones. Hospice care can provide options that could give you more control. It can help you to make decisions related to end-of-life care that are important to you. It can help the dying to be more comfortable and also provide comfort, emotional and even spiritual help. However, it is important to know and understand the services your hospice provider offers, as they are not all exactly the same.
Who is on a hospice care team?
In addition to a doctor and nurses, hospice teams usually include:
- Social workers.
- Medicine specialists.
- Spiritual advisers.
- Nursing assistants.
- Trained volunteers.
Some hospice teams may also include respiratory, music, physical and occupational therapists; pharmacists; psychologists and psychiatrists. Some people worry that they will lose the care of their regular, trusted doctor. But he or she can work with the others on your team and stay involved in your care.
Who is eligible for hospice services?
Usually, these two things must be true in order to be eligible:
- You or your loved one has a terminal illness that cannot be cured.
- Your doctor expects you to live six months or less, if your illness runs its normal course.
People who live longer than six months can be re-evaluated for eligibility to continue with hospice care. If the illness gets better, patients may no longer qualify for it. Hospice care is generally paid for by Medicare, Medicaid, and private insurance. Care also may be available to those unable to pay.
Where is hospice and palliative care available?
Hospice care can be provided in your home. Family members or loved ones may provide much of the daily care that is needed. The hospice team will work with them to help give the best care possible. A member of your hospice team may visit you for an hour or so once a week or more, as needed. Hospice programs also may offer services in a hospice center, nursing homes, long-term care and assisted living facilities, or hospitals. The choice of locations may vary from state to state.
For more information on where you can obtain hospice and palliative care, contact DTN Home Care or a local hospice provider.
by Marti Lythgoe, DTN Home Care Writer/Editor
This blog is not intended to be medical advice. Please contact your own team of specialists.