Aware Senior Care invited special guest Sandra Savell, author of “Dear Clueless: A Daughter’s Journey Through Alzheimer’s Caregiving” to reflect on her experiences caring for her mother afflicted with Alzheimer’s and solutions for caring for a loved one with Alzheimer’s in home.
Sandra’s book, “Dear Clueless: A Daughter’s Journey Through Alzheimer’s Caregiving” can be found here.
Q1) How do I find caregiving help in the home for my loved one?
Q1.) How do I find caregiving help in the home for my loved one? #AskAware
— Aware Senior Care (@AwareSeniorCare) November 11, 2015
a1 #askaware Finding a caregiver through a professional service is best-employees are investigated, insured, bonded.
— Sandra Savell Author (@SLSavell60) November 11, 2015
a2 #askaware You do not have to do all of the interviewing which is time consuming.
— Sandra Savell Author (@SLSavell60) November 11, 2015
a3 #askaware I put an ad in the paper, had 58 calls. 56 were completely unsuitable. Interviewed 2 and chose 1st interviewed
— Sandra Savell Author (@SLSavell60) November 11, 2015
a4 #askaware Kept getting phones calls for weeks after the ad ran
— Sandra Savell Author (@SLSavell60) November 11, 2015
a5 #askaware I hired 2 people from my church. 1 was stellar. The other was a no-show when desperately needed
— Sandra Savell Author (@SLSavell60) November 11, 2015
a6 #askaware The professional service may be more expensive, but will save time and frustration. Which you need to happen.
— Sandra Savell Author (@SLSavell60) November 11, 2015
Sandra put a lot of time and effort into researching memory care for her mother.
While hiring a private caregiver seemed like the optimal solution at first, the amount of time invested in the care planning process and due diligence required to find the right caregiver weren’t worth the financial savings. The costs of home care services through an agency, in her eyes, were worth the savings of a complicated and frustrating process.
A1) A reputable agency will do all the background checks, interviewing, and take responsibility for supervising the caregivers #askaware
— Gina Murray (@GMurrayAware) November 11, 2015
Gina adds that those looking for Alzheimer’s care services will benefit from hiring an agency by taking on the responsibility for the quality and professionalism of memory care.
Agree @SLSavell60 more accountability with agency, if someone doesn’t show that you hired yourself you’re without help that day. #askaware
— Kathy Birkett (@SrCareCorner) November 11, 2015
Kathy Birkett makes a great point here regarding private caregivers vs. home care agencies.
Private caregivers may not be available to work certain days for a variety of reasons.
Without a backup caregiver in place, a family could run the risk of not receiving help when they need it. For example: During the colder months, roads may be covered with ice and snow and a caregiver may not be able to show up, even if they’re available to work. Hiring your own care is doable, but requires a lot of planning and preparation to avoid potential pitfalls.
Q2) When will I know it’s time to place my loved one in assisted living?
Q2.) When will I know when it’s time to place my loved one in assisted living? #AskAware
— Aware Senior Care (@AwareSeniorCare) November 11, 2015
a1 #askaware When you can no longer adequately meet their needs at home.
— Sandra Savell Author (@SLSavell60) November 11, 2015
a2 #askaware They are not eating. They do not sleep. Falling regularly. Combative. Refuse to take meds.
— Sandra Savell Author (@SLSavell60) November 11, 2015
a3 #askaware Wandering from home. Refuse any hygiene. Total incontinence that is unmanageable.
— Sandra Savell Author (@SLSavell60) November 11, 2015
a4 #askaware If your marriage is in danger of ending because of the stress.
— Sandra Savell Author (@SLSavell60) November 11, 2015
Sometimes, home care services aren’t enough to provide for the needs of a loved one with Alzheimer’s. Sandra lists a number of signs you need to look for: Difficulty eating and sleeping, constant falling, medication mismanagement, poor hygiene, wandering from home, incontinence, and most importantly, severe stress on your relationships.
A2 It’s time for in home care when caregiver can’t do it anymore alone/burnout/injury, when person isn’t safe alone. #askaware
— Kathy Birkett (@SrCareCorner) November 11, 2015
A2 When their needs outweigh the family’s resources for provisions, this includes care & monitoring #askaware
— ShereeseM, MS/MBA (@ShereesePubHlth) November 11, 2015
Shereese notes that family caregivers need to consider outside help once their resources and time are stretched too thin.
A2 #askaware My mother tried jumping out of a moving car because she thought I had given away her daughter.
— Sandra Savell Author (@SLSavell60) November 11, 2015
A2 #askaware She could have killed herself, me, others on the road, or all of us. I knew it was time.
— Sandra Savell Author (@SLSavell60) November 11, 2015
@SLSavell60 A2) the stress is terrible. How do you tell an 86-year old man that he can’t manage on his own anymore? tough time. #askaware
— Bryan London (@blon0124) November 11, 2015
A2 It’s always difficult to admit we can no longer meet psycho-social &/or physical needs of a loved one. #askaware
— ShereeseM, MS/MBA (@ShereesePubHlth) November 11, 2015
Relinquishing caregiving responsibilities to a care facility may be difficult for family members of a loved one with Alzheimer’s disease to accept. But as Sandra points out, the consequences of doing otherwise could result in significant harm.
Q3) How can I get my family to help me with caregiving?
Q3.) How can I get my family to help me with caregivng? #AskAware
— Aware Senior Care (@AwareSeniorCare) November 11, 2015
A3 #askaware You can’t make anyone help unless they want to. Especially with the hands-on caregiving.
— Sandra Savell Author (@SLSavell60) November 11, 2015
A3 #askaware However, you can get help in less “personal” areas of caregiving, but you have to ask. Don’t expect volunteers.
— Sandra Savell Author (@SLSavell60) November 11, 2015
A3 #askaware Ask for financial assistance with hired caregivers, house cleaning or yard work.
— Sandra Savell Author (@SLSavell60) November 11, 2015
A3 Caregiving responsibility is a conversation that needs to happen before the need exists. Talk to form a plan before its time #askaware
— ShereeseM, MS/MBA (@ShereesePubHlth) November 11, 2015
a3 Feeling guilty about asking for help is just one of the many forms of guilt caregivers face. Don’t be afraid to ask. #askaware
— DocsMakingHousecalls (@HouseCallDocs) November 11, 2015
A3 If you micromanage everything about family’s help with caregiving you will find yourself working alone. #askaware
— KimShea (@SheaCompanions) November 11, 2015
A3 #askaware Ask someone to pick up groceries, prescriptions, etc. Or find a pharmacy that delivers.
— Sandra Savell Author (@SLSavell60) November 11, 2015
A3 Give family jobs that r easy for them, everyone has own skillset. Some uncomfortable w some tasks. Some may just contribute $$. #askaware
— Kathy Birkett (@SrCareCorner) November 11, 2015
Not every family member is ready to take on the role and responsibilities of family caregiver.
Some may contribute here and there with chores, some may contribute money toward care. Others may want nothing to do with it. It’s important to have a discussion with family (or anyone close involved) beforehand so everyone is clear on what to expect from others (and if outside care from an agency or private caregiver is required).
A3 #askaware Is there an “adult day care” where you could take your loved one regularly so you can have time in your own home alone?
— Sandra Savell Author (@SLSavell60) November 11, 2015
Adult day care is a cost-effective option for families that prefer having their loved ones with Alzheimer’s at home but cared for during the day at a separate facility.
Q4) My loved one makes nasty comments and racial slurs about people in public. What do I do?
Q4.) My loved one makes nasty comments and racial slurs about people in public. #askaware
— Aware Senior Care (@AwareSeniorCare) November 11, 2015
A4 #askaware “My mother has Alzheimer’s and doesn’t realize what she is saying. I am sorry. Please understand.”
— Sandra Savell Author (@SLSavell60) November 11, 2015
A4 #askaware More people will understand the situation than you realize.
— Sandra Savell Author (@SLSavell60) November 11, 2015
A4 #askaware Ask that she not be made to wait long at doctors, dentist, etc. Waiting racheted up this behavior.
— Sandra Savell Author (@SLSavell60) November 11, 2015
A4 #askaware Ask that she not be made to wait long at doctors, dentist, etc. Waiting racheted up this behavior.
— Sandra Savell Author (@SLSavell60) November 11, 2015
@AwareSeniorCare #askaware My GF was born in the south. In his later years, he did make comments. I just had to quiet him down. Not fun!
— Bryan London (@blon0124) November 11, 2015
A4 #askaware Choose restaurants where you are known and have them seat you away from the crowd.
— Sandra Savell Author (@SLSavell60) November 11, 2015
A4) That’s a challenging one! Keeping a straight face and ignoring it may #askaware
— Gina Murray (@GMurrayAware) November 11, 2015
A4. People often change behavior from dementia. Apologize for them if you want to but let it go. You’re fighting a losing battle. #askaware
— KimShea (@SheaCompanions) November 11, 2015
Alzheimer’s and dementia can change a loved one’s behavior in public for the worse. While there’s no one solution to handling difficult situations, an explanation of the illness may be enough for most people.
Q5) The doctors don’t even seem to be interested in taking care of my loved one. How do I get them to listen to me?
Q5.) The doctors don’t even seem to be interested in taking care of my loved one. How do I get them to listen to me? #AskAware
— Aware Senior Care (@AwareSeniorCare) November 11, 2015
A5 #askaware My mother had 8 specialists which meant I took her to 2 appointments a week. It was exhausting.
— Sandra Savell Author (@SLSavell60) November 11, 2015
A5) Have the facts written down before you go to the visits #askaware
— Gina Murray (@GMurrayAware) November 11, 2015
A5 #askaware For Alzheimer’s meds I suggest a psychiatrist. They are more knowledgeable about these meds and how they interact.
— Sandra Savell Author (@SLSavell60) November 11, 2015
A5. Have dr who isn’t interested in loved one’s? You need new dr, preferably a geriatricin if loved one’s aging. Fight like hell. #askaware
— KimShea (@SheaCompanions) November 11, 2015
A5 1st, ensure your doctor is geriatric-certified, you’d be surprised who isn’t. Next, have a 1:1 convo w/ phys to share concerns. #askaware
— ShereeseM, MS/MBA (@ShereesePubHlth) November 11, 2015
We have seen that our being in the patient’s environment is really key to forging a connection between family patient and provider #askaware
— DocsMakingHousecalls (@HouseCallDocs) November 11, 2015
Take charge of your care. If your doctor isn’t giving your loved one the care you need, look for another doctor. Preferably, they should be a geriatrician and/or experienced in elder care and Alzheimer’s.
A5 #askaware I met with Mom’s primary care doctor and we decided that Mom’s conditions were well controlled.
— Sandra Savell Author (@SLSavell60) November 11, 2015
A5 #askaware I allowed the primary care doctor to take the place of 6 out of 8 specialists, unless a problem arose.
— Sandra Savell Author (@SLSavell60) November 11, 2015
A5 #askaware This situation worked very well. Once Mom went into assisted living, she saw a primary care doctor at the facility.
— Sandra Savell Author (@SLSavell60) November 11, 2015
A5 #askaware I would book a “double” appointment with her doctors to have time to review everything that was going on.
— Sandra Savell Author (@SLSavell60) November 11, 2015
@AwareSeniorCare A5 be prepared to have specific examples about why you are concerned. Be prepared to advocate #askaware
— Emily Burnham (@EmilyGGB29) November 11, 2015
A5 #askaware Ask friends to refer good doctors. If you have a bad doctor, fire them.
— Sandra Savell Author (@SLSavell60) November 11, 2015
A5 Can’t discount having geriatrician who is aware of elders needs and empathetic to caregivers. Too few around. #askaware
— Kathy Birkett (@SrCareCorner) November 11, 2015
A5 #askaware But before you fire them, line up the new one and be sure they accept your loved ones insurance.
— Sandra Savell Author (@SLSavell60) November 11, 2015
A5) geriatricians will look at patients medication list differently that GPs #askaware
— Gina Murray (@GMurrayAware) November 11, 2015
a5 Ongoing primary care can be proactive and preventive instead of crisis oriented & reactive- stop the ER & hospitalization cycle #askaware
— DocsMakingHousecalls (@HouseCallDocs) November 11, 2015
Caring for a family member with Alzheimer’s can be incredibly challenging, but taking charge of their care with preparation and communication with your family and doctors can make the situation much easier to handle.