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Caregiver burnout

Care giving for a spouse suffering from Alzheimer’s disease or another form of dementia raises the mortality of the spouse providing the care.

This is a very complex time in life. We often see a family caregiver who has lost weight, is sleep deprived and a has compromised immune system. It is ironic that the family caregiver’s health fails while their loved one is in relatively good health other than the effects of dementia.

Resentment can also set in on the caregiver. Irritability, hopelessness and helplessness also take over. Some are filled with anger, sadness, and a sense of failure. Depression is a risk as a result of these stressors, emotions and illnesses. It becomes clearer why caregiver mortality rises.

Studies show that mortality rises when a spouse is providing care for dementia.  Most studies show about a 63% increase in mortality for the caregiver in this type of situation.  Unfortunately it does not stop there.  A study done by The New England Journal of Medicine in 2006  shows that a wife’s risk of death is 61% greater during the first 30 day following the death of her husband.  While not as great, the husband’s risk is 53% following the 30 days after his wife passes.

Imagine planning for your golden years throughout your adult life. Perhaps you envisioned traveling the world on cruise ships, or seeing the USA in a RV, or even a simpler life puttering around in the garden, doing things you never had time for earlier. These visions fade because of a horrible disease.

Providing care for your spouse with dementia makes it difficult to sleep, shop, cook, and do most other activities that were routine and once taken for granted.  Socializing becomes a thing of the past. The caregiver stops going to church, family functions, and social events as a result of having to stay home to make sure their spouse is safe.  Isolation and burn-out can be self imposed because of the belief that no one can do it as well as a family member.

Furthermore, the family caregiver feels a loss of  identity as mom, dad, friend, confidant, grandma or grandpa when every ounce of energy is directed at caregiving.

There are devastating consequences to personally providing 24 hour care 7 days per week without getting outside help.

If you can identify with the above, take it upon yourself to get help. Many communities have caregiver support groups where you can find out how others cope successfully. Senior centers may offer day care and there are agencies where you can hire caregivers to give you a break by coming in for a few hours on a regular schedule. Assisted living facilities often have respite programs for overnight stays.

 

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Reversing Roles between Parent and Child

Age related illnesses often cause parents to depend on their children for care. Roles become reversed. This is a confusing time to shift orientation from the self sufficient parent who guided and supported their children, to a parent who is dependent and needy.

Adults are faced with uncertainty on how to relate to their aging parents. Feelings of guilt, regret, and incompetence accompany the role reversal. No matter how much the adult is compelled by love, decency and gratitude for their parents, it feels strange to  become the caregiver.

Adults of aging parents are often in the stage of their life that is incredibly demanding. They are working long hours and caring for their own offspring. How do they add another time consuming role of caregiving for their own parents? The response we frequently hear is “You do what you have to do.” They squeeze in the time to try to do it all.

There are only 24 hours in a day, so something has to give when dividing time between work, spouse, parents and children. Activities which support well being such as hobbies, fitness activities and socializing are let go. Despite cutting back on time for themselves, there is still not enough time in the day. Adults doubt their effectiveness on the job, in their marriage, at caregiving and parenting.

We offer these tips to those who feel overwhelmed when caring for their parents while managing all of the other responsibilities of their current roles:

  • Acknowledge your feelings, then move on. You may have regrets that you didn’t do enough for your parents, spouse and children. If you realize that no one can please everybody all the time, you might just give yourself a well-deserved break.
  •  Slow down and take a breath. Breathing will calm you down and improve your ability to think with a clear head.
  •  Let go of the notion that no one can do it as well as you. Let others help when offered. Ask for help when needed. Allow your children to help their grandparents within their abilities.
  •  Explore opportunities for respite. There are home health agencies which offer respite services on an hourly basis, and many assisted living communities will provide care for several days/weeks. If there is no money to pay for respite, ask another family member or trusted friend to give you a break.
  •  Realize that you are not alone. Confide in your friends and clergy about your doubts and fears.

Caring for others without short-changing yourself can be tremendously rewarding. It is the greatest honor to help those whom you love.

 
 

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Breaking the News

Breaking the news to a parent that it is time to move from their home into an assisted living facility is one of the most difficult tasks according to most of the families we meet. While some individuals welcome the benefits of living into a senior community, many fear their loss of independence and are not ready to face their inability to care for themselves. We have seen many approaches, and just as individual personalities and situations vary, so do the successful ways in breaking the news.

It is helpful to bring up the idea on several occasions. Mom or Dad will likely resist at the first mention of assisted living, but may warm up to the thought over time. We recommend that you do some research before bringing up the subject. Pre-screen a few communities you think would fit Mom or Dad’s needs. Then, talk to them about their preferences for living arrangements and explore options together. Most communities have web sites where you can take a “virtual tour.” Check out the community’s reputation with their licensing agency, the local Ombudsman’s office and the Alzheimer’s Association. Once you have selected a few, make an appointment for a tour and bring your parent with you. By encouraging their participation, they will become more invested in the idea. Once your parent learns about their living arrangements, activities and comforts of care, they may look forward to moving.

Decorate their new room or apartment before the move. Many communities will encourage bringing bedding, furniture, pictures, and memorabilia. Familiar belongings will trigger feelings of comfort and security. Do not bring valuables or items that you won’t mind getting misplaced or damaged.

Perhaps your parent is very stubborn and absolutely refuses to talk about the idea of moving into assisted living. The idea may become more acceptable if it is based on the recommendation of a trusted doctor. Further, constantly reassure your parent that you and other family members will remain involved in their life, and follow through on that promise.

We definitely do not recommend dropping off them for “lunch,” moving their belongings into their bedroom while they are dining and making a quick get-away. We have witnessed this approach and it always results in a great deal of emotional trauma. Residents of assisted living facilities do not give up their personal rights, and cannot be prevented from leaving if they absolutely refuse to stay there.

Respite care is an option to temporarily try assisted living. Just as a daunting task can be more manageable by breaking it down into smaller steps, respite care allows an individual to stay for a few days, or up to a month, to see if it is the right environment. In our experience, many residents want to stay longer, once they get settled in.

In other cases, the individual’s impaired mental capacity prevents them from being actively involved in the decision making. Many of the same recommendations apply for those with dementia, plus:

  • Carefully research communities and select one which has a dementia program.
  • Speak with the staff about your parent’s background and any special needs.
  • Make the move during their best time of day when they are calmest.
  • Stay positive – your attitude is infectious. Do not communicate any feelings of guilt or anxiety.
  • Provide constant reassurance that Mom or Dad is in a safe place.

 

 

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A Day in the Life at A Brand New Day

I wake up to a sunshine filled room and there is a huge young man greeting me with a friendly “Good Morning Wilbur!” I have no idea where I am, or who he is, but figure that it can’t be that bad because he knows my name and he seems nice.  I fake it and reply “Good Morning to you.” As usual, my bones ache and my feet feel numb, so it is nice that the big guy is strong enough to help me out of bed.

I just wish I could figure out where I am. Oh, wait a minute… aren’t I needed in the barn to collect eggs? My dad and uncle will be so mad at me if they find out that I slept in. I’m going to be in such trouble! I can see that the big guy has a name tag on. It says Adam. I ask Adam for help to get to the barn, but he says we don’t have a barn. Oh my, what is going on?

Adam can see that I am upset so he attempts to comfort me. I don’t know what he is talking about but follow his lead to the bathroom to wash up for breakfast. What a relief, all of my stuff is laid out next to the sink so I know what to do next.

As I walk down the hall, I smell coffee brewing, and bacon and eggs on the stove.  I’ve always loved fresh eggs, but I have this vague feeling that eggs are a problem. I sit down at my spot, surrounded by people,  yet none of the faces are familiar. I am served my favorite breakfast, eat my fill and the plate is removed for me. Mom is such a good cook. Where is she? Where am I?

Adam is back and he is handing me a little paper cup of pills with a glass of water. “Here Wilbur, take your medicine. It will make you feel better.” I trust him and swallow the pills. Now I am following Adam to the living room to watch the morning news. How does he know that I want to look at the news each morning? I literally don’t know him from Adam.

Just as the news is ending, a lady greets me and asks me if I want to go to the Sun Room for Bible Study. I can’t remember when the last time I went to church, so I figured I should go. She walks me to the Sun Room where there are a group of old people sitting around listening to this old guy read from the Bible. How come there are so many old folks around? I sit down on a warm and cushy chair listening to a story about David and Goliath when I wake up with a start. No one is reading from the Bible any more. How long have I been asleep?

I notice a group of people playing a game outside in the courtyard. The lady catches my eye and encourages me to join them. What the heck, I’m good at games. You’d think I won the World Series the way the group cheered when I tossed the ring into the center hole. This feels good!

My stomach is grumbling just when the big guy comes around to help me wash up for supper. What is his name again? We’re having beef stroganoff over egg noodles, broccoli and mixed fruit. I hate broccoli and am relieved that I am not being treated  like a child when I don’t clean my plate. No one says a word when I start in on the cherry pie. We always had a big meal in the middle of the day on the farm, so I know everything is all right. I’m given more pills to swallow.

After the tables are cleared, the big guy and the lady start setting up for bingo. This is popular with the old folks, but I like it too. It seems like everyone else is winning prizes but me, so I get a little grumpy and announce that I’ve had enough. The lady persuades me to stay for one more game. Lo and behold, I win!

I wake up from my recliner and the light is dim outside. Oh, this is so confusing! Where the hell am I? Who are all these people around me? There’s another lady who wants me to swallow a pill but I swat it out of her hand. Where is that big guy? I see shadows through the windows and suspect they are coming right at me. “Get those bastards out of here!” I scream.

Everyone seems so concerned. I follow a younger lady into a brightly lit dining room. She hands me a cup of tea and asks me to tell her about my farm. We talk and fold napkins together. This ain’t so bad.

Now it’s time for dinner. Chicken noodle soup, warm yeast rolls, green salad and chocolate pudding. Mom is such a good cook. Where is she? I haven’t seen her all day.

I settle into my favorite recliner and watch Bonanza.  Another lady, the pretty one, offers me a glass of milk to wash down my night time pills. I’m glad they help me remember because that doctor has put me on so many pills that I couldn’t keep them straight on my own.

All in all, it’s been a good day. I’m tired and ready for bed. The pretty lady tucks me in. I feel safe and warm.

This is a story of an 87 year old man with Alzheimer’s Disease. His short term memory is gone, but his childhood days come back to him vividly. It is not uncommon for those who have Alzheimer’s Disease to experience “Sundowner’s Syndrome” in the late afternoon. While this is a fictional account of a day in his life, it is an accurate reputation of the rhythm of life at A Brand New Day.  

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All About Seniors

 

A Brand New Day – Redding writes a Senior Living column for the Record Searchlight which can also be seen online at Redding.com. We talk about a wide variety of subjects with common thread about topics relevant to Seniors and their families. To follow is a compilation of last month’s posts. We hope you enjoy them.

 Senior Living: Fathers’ stories reflect hardiness of Greatest Generation

27 Sept 2012

 “Our first thought was that our dads had it easier than we do. They never went through “transition.” They worked for the same employer, had pensions and for the most part, financial stability because of positive economic times. Visions of “Mad Men” came to mind with the martini lunches and ubiquitous tobacco smoke hanging in the air.

I was talking to a childhood buddy, reunited by recent “in transition” network efforts. As we reminisced about old times, we started talking about…” (click for the entire story)

Senior Living: Prostate health important to senior men

19 Sept 2012

Prostate health is a man’s issue. We usually do not focus on a specific gender in these columns, but this is an important issue for men that should not be ignored.

Most men over 50 should have had their prostate checked physically and through blood tests. Early screening is crucial, because like most cancers, treatments are often most effective when cancer is… (click for the entire story)

Senior Living: Fans and friends share more words to live by

5 Sept 2012

Several weeks ago, we shared quotes that we felt were meaningful to our senior community, or just some nuggets of truth that struck our funny bone.

We asked our readers to share quotes that are meaningful. Both our readers from this column and our Facebook fans were eager to contribute quotes.

We are on Facebook

If you would like to become a Facebook fan and connect to others who share your interests, please check us out on our Facebook page at ABrandNewDayRedding. Every Friday we have a PhotoTeaser, (click for the entire story)

A Brand New Day is a 26 bed Memory Care assisted living facility in Redding, CA focusing on Alzheimer’s and dementia, respite and hospice care. Our license number is 455001567. We invite you to contact us with any questions when you are concerned about the safety of a loved one at 530.223.1538. We are happy to be your Senior Care resource.

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Making the Best Choice in Assisted Living

A report from the consumer Federation of America showed that complaints about assisted living facilities landed in the ranking of 9 of the top 10 consumer complaints in 2011. As operators of an assisted living facility in Redding for the past 7 years, we’d like to offer some tips to manage complaints, as well as to avoid unpleasant situations in the first place.

It is critical to assess the individual’s assisted living needs and their preferences prior to selecting a facility.  Some assisted living facilities give the individual a lot of freedom and choice. Others are more restricted. The amount and types of restrictions are usually based on the degree of care the individual requires. Someone who remains mentally alert and physically able to drive should be able to keep their vehicle and have the freedom to come and go according to their desires. On the other hand, someone suffering from dementia will be a danger to others (and themselves) if they are permitted to operate a vehicle or leave the premises unattended.

There are a wide variety of assisted living facilities in Shasta County, which puts the consumer in a good position to be choosy. An extroverted person is likely to prefer a large facility with a packed activity calendar full of options to socialize. There are small, quiet facilities which are better suited to those who like to keep a simple routine and may not enjoy being around lots of people. In most cases the “birds of a feather” adage applies. People generally like to be around those who share the same interests and abilities.

Once the personality of the facility is matched with the person, dig deeper to verify what you see on your visit is what can be expected every day. Then check their  records. All assisted living facilities are licensed by the State of California. The closest office is in Chico. You can call Community Care Licensing at 530.895.5033 to see if there are any complaints and to see reports of audits. Ask current residents how they feel about living there. Seek feedback from their family members, friends and others on site. Pop in unannounced at  different times of the day to make sure the facility is as good as when you were given a tour when everything was planned to be perfect.

Check out the food and the menu. Complaints about food seem to be the most common. While it’s true that you can’t please everybody all the time, good facilities spend a lot of energy and resources on the food to try to appeal to the most people.

Ask to see all of the paperwork and obtain a full disclosure on the pricing policy. If you thought the paperwork involved in buying a house is complicated, just try to move into an assisted living facility! California state licensing requires an incredible amount of documents to be signed. This may be a hassle, but it actually protects you from misunderstandings and problems down the line. If you don’t get a chance to review the paperwork in advance, it’s easy to overlook the fine print.

The price quoted on your first inquiry may not be the same price upon move in. That is because many facilities charge a “level of care” fee. They will quote the basic rate at first, then determine the cost of additional services required by the individual. In most circumstances, this is a good thing because you are paying only for the services delivered.  A flat rate means you may be overpaying if only minor additional care is needed. In other cases, assessment of the level of care may be arbitrary. Find out if a point system is used and examine the assessment for accuracy. Avoid disclosing how much you can afford. Unscrupulous places will find a way to charge up to your maximum budget. Investigate how often the price may be increased over a given amount of time.

Ask about additional charges. Will you get an itemized bill showing charges for toothpaste and body wash?

You may find the need to make a complaint even after you have done your due diligence. Complain to facility management first. If the issue is not resolved, call Community Care Licensing and the Ombudsman’s Office 530.223.6191. You can be sure both agencies will promptly investigate your complaint and follow up with you.

There are many factors in determining which assisted living facility is a fit. We welcome your questions and are available for free consultations. Please contact us at A Brand New Day  530.223.1538 or info@abrandnewday-redding.com

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