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helpful--if you hire outside caregivers to supplement I found locally owned independent agencies were much easier to work with (not the national franchises.)
helpful--if you have caregivers in the home treat them well. They have a lot of job options.
helpful--Pay generous Christmas bonus. No one quit after I started this and this was during Covid times, very difficult to staff.
helpful--if your loved one has dementia/alzheimers hire CNA's that have hard core dementia/alzheimers experience. I had to tell the agencies to only send CNA's and not to send the untrained home aides. The untrained home aides were nice ladies but not up to the job.
neutral--I kept the Wifi going. I used it plus I gave Mom's caregivers the WiFi code. I had 3 caregivers get their college degrees while working for Mom and they used the WiFi for college projects. One got her RN, one got her social work degree and one got her mortuary science degree.
neutral--I kept paying the cable tv bill. If it were just me I would have cancelled the cable. Mom did not watch tv and I did not watch tv but I kept it going for the caregivers that we used. It made for a better workplace environment.
I was the caregiver for my mom who lived with me for the last 2 1/2 years of her life; Every caregiving journey is different depending on the situation and condition of the care recipient…so what they find helpful can also be different. Additionally the quality of services can vary. Helpful for me: Having a private pay aide who was flexible (agencies had a minimum number of hours…more than I needed) Meals on Wheels Getting equipment (shower chairs, commode, wheelchair) from my town's Senior Center ;Caregiver support group (local, in person) Visiting Nurse services (including PT) after hospital stays services for her final weeks and grief support after Motorized stair chair Not as helpful: ehab stay at a Nursing Home after a hospital stay (switched to Visiting Nurse) Palliative Care (as they could not prescribe) Pain Clinic (treatments that quickly became less effective, rules required an in person visit every month to renew pain meds, random drug tests one keeping us there for hours) Not Helpful: Referral service who kept calling even after I said I was all set
This forum where, generally, people UNDERSTAND—no one else, no matter how well intentioned, really can appreciate the scope of what a caregiver goes through. THIS is very helpful—also to learn what has worked and not worked for others. And usually judgments are absent.
Keeping an updated listed of meds (with dosage and how many times a day taken), and a list of all doctors with their addresses and phone numbers. I also like to keep a written schedule of when his meds are to be given in case something happens to me. I keep all this in notes section of my phone (as well as a hard copy near his meds at home)so I don’t have to carry papers to every doc appointment and then have it handy if end up in ER for any reason.
Equipment: Raised toilet seat with arms and “funnel” that protects splatter, shower chair with arms, liquid soap (bars have been a fall hazard), lanyard medical alert with GPS, appropriate walker with basket and a tray that can fit over the walker and be a little desk or snack tray, desktop magnifier with light, easy chair to relieve swollen feet/ankles, good lighting with LED bulbs that don’t get hot if left on for long periods, electric blanket, amazon portable ramp for use with wheelchair/transfer chair, foldable transfer chair, extra sets of sheets (and sheets that come with a little tech pocket sewn into sides—to hold electric blanket controls), lots of chuck pads, good disposable underwear and bedside disposable washcloths. Nail cutter things that look almost like pliers—work better on thick fingernails and can be more precise. Kindle or IPad—lighting and fonts can be adjusted so care recipient can read or play games, listen to audio books and music, etc. A supply of wound care stuff in case of a skin tear (skin becomes very fragile and just bumping against a doorway or something can cause damage at times—especially when on blood thinners). Battery scooter was excellent when his eyesight allowed it to be used safely. Slippers with hard sole and Velcro that can be adjusted if there is swelling (on Amazon under diabetic care—even if don’t have diabetes they are useful. Dad wears them as shoes everyday ). A blood pressure machine (arm cuff type), scale, oxygen reader thing that fits on finger, thermometer . I have found that notebooks I can use to record BP, med distribution and times, weight, any unusual symptoms or doc discussions/instructions are great.
Air fryer and crock pot help with easier meal prep (for carer in our house). Keurig coffee machine where there is no “pot” that can be dropped/broken. Wallet with Apple AirTag pocket.
Services: PT whether in home or out! In home nursing. Every other month podiatry for nails. Great and accessible docs (love portals if they are really used by doc ). Insta cart for days I just can’t get away to shop.
Support: Friends checking in for a chat. If care recipient has any friends who could still drive safely, I know both carer and care recipient would LOVE for them to take the recipient out for a meal or coffee or outing (we have no one, but this would be heavenly!). We have not experienced this in person as a visit, but the person I care for has someone who calls him every other day for a long chat. What a blessing for the care recipient to have someone outside the home to engage with! I am so grateful that my sister-in-law took this up after by brother died.
Not so useful to us (I have wasted my money on): Elliptical that you use while sitting in chair (dad hates it and won’t use it), regular nail clippers, notebook computer (he aged out of being able to really use it because of eyesight and somehow constantly ended up with security issues), online banking (great if care recipient can use it safely, very dangerous if they can’t or they invite security issues onto their computer. It’s great for your use FOR them if they allow it as my dad does). Some might find them useful, but an “active engagement” person offered by a local care management firm didn’t work.
You have to be very observant of your loved-one's capabilities, day by day. And expect those capabilities to decline over time. Are they wobbly on their feet? Do they need a rollator or cane. Is that enough to keep them safe, or should they have someone with them when they walk? How is their hearing? Do they need someone to be with them because their hearing is bad? Can they get dressed, take a shower, go to the toilet, etc. without assistance? Or do they need someone to help with these daily activities? Are they capable of planning healthy meals, shopping for food, using the kitchen appliances correctly and cooking their own meals? Are they capable of feeding themselves. Check the refridgerator. Is there spoiled and outdated food in there that must be thrown out periodically? Are they eating properly (not losing or gaining weight inappropriately). How does the house look? Is it clean and uncluttered? They may need help with housekeeping and organizing. Is there old mail piling up, unpaid bills, etc.? If so, someone may need to take over their finances. Make sure that all of their paperwork is in order. They need to set up Powers of Attorney (POA) for medical (health care proxy) and financial (durable POA) decisions, in the event that they are not able to make decisions for themselves at a future time.
Someone actually bringing a meal, offering to run errands, picking up a few groceries (which I pay for), doing a little light housework, little things like that. I have found that if I ask someone "is there something I can do?", or "do you need anything?", people will usually decline the offer because they don't want to be a "burden" to someone else. But if I show up with a meal (doesn't have to be anything elaborate), they will generally accept it and eat it with a grateful heart because that's one less thing on their list to do for that day. "I'm on my way to the grocery store. Do you need milk, eggs, bread, snacks?" or "What kind of (whatever) do you need?" Try to think of something that would give you happiness, but you would never ask someone to bring/do. Little things go a long way in a stressed-out caregivers day
Truly useful for us: - This forum - Understanding how Medicaid is state-run and varies greatly (and basics of how it works in our state) - Understanding how county-based resources vary & what we had access to - Plastic portable urinal for FIL (vs. him spraying half the bathroom) - Automatic/movement-detecting lights all over the place - Touring multiple AL/MC facilities - Having help through https://twincitiescare.com/ (I wish this model existed for all of you everywhere!) - Meals on wheels - Setting up POA & healthcare POA - Grocery/etc delivery & curbside pickup - Automating all bill paying - Centralizing all account details - Switching to geriatric specialists who understand Medicare & Alzheimer's - Using the 8-wk Medicare home help after every incident/assessment - Maximizing VA benefits (in-home caregiving, equipment, Rx, meal supplements) - Preplanning/buying funerals
Didn't work for us: - Installing bidets for change-resistant seniors - Thinking we could reverse declines with the right food/therapy/etc formula - Taking responsibility for others' happiness - Believing in the security/dependability of sibling relationships
And I know from this forum specifically, the absolutely most useful thing we have had going for us is kind, loving, mostly-compliant seniors. I seriously cannot imagine going through the amount of work and stress and responsibility caregiving entails to entitled, bi***y, narcissistic individuals who having built up a history of providing care and love.
Finally, one of the most valuable things I've obtained/learned is how to leverage this knowledge for myself and my husband. Knowing more about the systems, funding, physical changes, etc, helps me plan better for us and reduces some of the stress that comes from putting on blinders about the future.
Tumberg, thank you so much for asking these questions. I've been caring for my mom, who has dementia, for a little over 11 years, now. Hands-on for the first 5 years, and then coordinating her care since she moved into facility care 6 years ago.
To all of you who have responded, it is SO VALIDATING to hear that others find the "be sure to take care of yourself" advice that is EVERYWHERE, in every article, seminar, conference, and support group, to be USELESS.
I found all the self-care platitudes to be insulting and asinine during the years I was the hands-on caregiver, and I honestly thought there must be something wrong with me because "everyone" kept recommending self care and I could not figure out how to manage to do it--unless "self care" means sobbing in the shower every night.
I still feel pretty overwhelmed by the enormity of managing my mother's care, finances, taxes, insurance, doctor appointments, meds, emergencies, etc., etc., but I do have actual time for actual self care now that she has a 24/7 team looking after her safety and physical needs.
If I never again read another stupid article titled "10 Helpful Tips for Caring for a Loved One with Dementia," it will be too soon.
So, thank you everyone for your honesty on this topic.
This is so broad, it could take days or pages to respond to.
The needs of the specific person dictate what actually helps day-to-day. It depends on how the brain is functioning; degree of dementia.
What I did (do) working with elders - Listen. Assess. Observe. Realize how to proceed is often trial by error. It isn't one size fits all. Take notes (useful for MD / facility management and tracking changes). Support where they are mentally and in all their abilities / cognition. Staying calm. Taking breaks as needed (self-care) Responding in ways that do not set up an argument as the person in need will usually (or always) believe they are right and they are fighting for their independence (whatever they have or believe they have).
Always bring compassion to the present. Realize a person declining is scared. See their life / situation from THEIR POINT OF VIEW.
I appreciate all of these responses - it's hard, but validating to hear how caregiving is going for other people. One idea I'd add... if friends/family ask how they can help, tell them that you would appreciate regular connection and check-ins - text, e-mail, call, visit, offer to run errands, do chores - not just once or once a week, but with regular frequency, even if you live far away. When I was caring for my Dad (mostly during COVID), it was so intensely isolating - the random, infrequent "I wish there was something I could do to help" was really unhelpful for me. Once COVID restrictions were eased, I hired a housecleaner (against my Dad's wishes), I took him places that I thought he'd enjoy, I reached out to local relatives and invited us to their houses, etc. NO ONE reached out to me regularly - yes, there were occasional "how's your Dad doing?" texts, but not regular connection. I felt broken after caring for my Dad for several years and I think connection would have really helped me.
I've tried to offer connection to other people caregiving. I have good friends whose son had a brain tumor and they became full-time caregivers to him as his health declined - I texted almost every day - just to say I was thinking about them. I told them I was running errands in their neighborhood and offered to pick things up at the store (even when I was nowhere near their neighborhood). I offered specific help - hey, we just had a windstorm, can we come rake the yard? I know you have a long day of appointments on Wednesday, can I walk the dog? Other days... can I walk with you when you walk the dog at noon? They craved news from the "outside world" and I obliged talking about my family's activities because they were tired of talking about treatments - they needed distraction. I told them from the beginning that they didn't need to respond to me - I knew they were overwhelmed. They've said that knowing they and their son was so loved really helped them through that time.
You seem like a great human being. Your post reminds me that it's good to continue to reach out to people after their family member or friend has died. I've found that it feels hard to do this but always seems to be appreciated by the people whose loved ones (or whatever you want to call them) have died.
I had mom living with me for the last two years of her life. For me the most difficult task was keeping mom clean. I had an aide come for mom three times weekly just to shower, wash hair, change clothes, apply lotion. That one thing helped me immensely. What wasn't helpful was siblings saying to let them know if I needed anything. Of course I needed help. I would have appreciated more the offer to just come visit mom once in a while, or go grocery shopping for her.
Helpful stuff- 1. online pharmacy like Amazon using the PillPack system that presorts and labels the daily medication. 2. Living in an independent facility that provides 2 meals a day and weekly housekeeping 3. Online grocery delivery that brings food to the door 4. Dryment pajamas that reduce nighttime incontinent leaks 5. Caregiver assistance programs through state and local agencies (currently getting 1-1 counseling and respite care)
Great list and most are doable. I care for husband. I do not refer to myself as a caregiver-caregivers get to go home after their shift and see friends, take hikes, go to movies or dinners, Wives cant do any of those things without hiring someone which then defeats the point. No free assistance programs where I am. Keep your great attitude.
As a former live-in sole caregiver of my Mom for over 5 years I would say breaks! If people are willing to come and sit with your person even a few hours to get away it's priceless! At least it was to me. Also the mundane errands like picking up pills or personal care supplies and making meals that can be frozen for your person so you don't always have to cook but they can get a good meal. things that don't help-saying what do you need or I'm here to help if you need me-sounds good but to the caregiver it's more to think about or plan out. If you want to help just find a way yourself and do it! lastly, something no one ever did for me that I think would be great for a caregiver-plan a day for them away from their person and set up the whole thing-a replacement caregiver for the day included...let them feel cared for.
--make sure you have snow removal service --develop relationship with local pharmacist. The pharmacist was very helpful several times for second opinions --have backup plan re: local facilities, tour so you know what is out there
Couldn't agree more about developing a strong relationship with the local pharmacist. She has been an invaluable member of the care team and has helped me a lot.
-Cleaning service--once a month, or biweekly, or weekly, whatever you can afford
-Septic pump out--if you have a septic system get it pumped out on the recommended schedule
-Fix broken things--several others have mentioned. This was constant. Something was always breaking: blender, washer, dryer, wifi network, frig, oven, irrigation, locks on doors, car, cable tv, hvac, well water softening system etc.
-Build a network of local repair guys. Pay them promptly. Be nice to them. You need these guys for the stuff you can't fix yourself.
-Have PCP prescribe Physical Therapist to come out to the house. He recommended what kind of grab bars to get and exactly where to install them.
--Be creative about services/vendors in your area. Mom's house had a water softening system due to the iron in the well water. The problem was you had to lift a 50 pound bag of salt and dump in the top of a tall tank. This was very difficult for a woman to manage and we had to do this about every 8-10 weeks or so. After struggling with this for years I learned the water softening company would come out and do this for very very little money. They were hired.
Useless--the "Be good to yourself" mantra. This was useless
Mixed--Let go of anger that you have at family members not helping. I carried this anger at my sister for 6 years for not even visiting once in 6 years. It would have been healthier if I had been able to let this anger go.
Great suggestions for getting and staying organized. Under "Mixed" that is where I am now - trying to deal with the anger and disappointment I have with my sister for not helping. It's been 7 years and other than keeping her updated weekly about our father I do not speak to her. Yes, there is more to it than just her lack of help with caring for our father but it has shown me a very selfish side of her along with disrespect for me so she is no longer someone I want as part of my inner circle.
tumberg, for me on-line grocery shopping with curb-side pickup was a Godsend. I tried to do both grocery lists inside the store but it became too overwhelming dragging around 2 grocery carts. And since I was still working full-time, going grocery shopping Sat and again on Sun was very time consuming.
If the grocery store overcharged my Mom even 10 cents she wanted me to go back to the store with the item, the receipt and grocery ad. So I just pretended I went back to the store, as it would have cost me more than 10 cents in gasoline. I gave Mom a dime out of my own pocket.
Oh, if you are caring for both parents, make a doctor appt for both of them at the same time (if they both see that specialist). One thing I learned on the paperwork that the front desk gives you to fill out for them... I just drew a line through the paperwork and wrote "same as before".
Good clear lighting throughout the house, porch, decks and outdoor lighting on paths used in the yard. Especially in the bathroom.
Yard maintenance guys on a schedule.
House cleaner either couple time a year if the well spouse or live-in family can do weekly chores. And they move seasonal stuff in & out. Or weekly housekeeper if not.
Helpful: Having the right tools. A good hospital bed, wheelchair, hoyer lift, commode/shower chair, a ROLL-IN shower (not walk-in, which does NOT accommodate someone who is wheelchair bound!) Lots of bedpads, washable and disposable, diapers, creams and ointments, gloves, wipes, and throw blankets.
Unhelpful: Nothing irks me more than yet another suggestion or reminder to "take care of yourself" !! What does that mean exactly?! The people who utter such nonsense have obviously never been stuck providing 24 hour care for someone, with no help!
My parents hire a housecleaner to clean their house weekly. They could afford to gift me a one time housecleaning. But, they don't. That would be helpful!
They could stop inviting themselves over for dinner once a month. Whenever MY grandchildren come over, my dad and stepmom expect they should be included, but they are actually too busy for family, so it feels belittling as they consult their busy schedule to find an hour on their calendar that works for them to come over and invade my house, while I am taking care of a bed-ridden spouse, 3 grandchildren, and making dinner for EVERYBODY! If you have a family member or a friend who is taking care of a disabled person full time, it's ok if you don't feel compelled to help with the hands on. Understandably, that makes some people really uncomfortable. BUT, Don't make everything about YOU and expect the carer to do things for you in their "spare time"! Don't come over empty-handed and expect the caregiver to play hostess! Bring coffee, snacks, a meal. Clean the dishes in the sink, if there are any. Run the vacuum for them. Fix something that is broken, that the caregiver hasn't had the time or money to take care of. Engage with the ill family member - sit and talk with them, listen to them, bring them something to eat, just keep them pre-occupied for a few minutes! No one wants to do that, because it is uncomfortable, or unpleasant. But what a relief to the caregiver who does it DAILY!
I just want to sit down with your parents and explain to them what you don’t need! I’m so sorry they do not see your struggles. Taking care of my mother at my home was HARD but I can’t imagine how much harder it is with a spouse. I eventually made the choice for memory care because, you are so right, self-care isn’t possible if you have little or no help and a person you care for that can’t be left alone. I wish you well.
Practical day to day supports can include things that have nothing to do with caregiving. Hire a cleaning service. Have your groceries delivered or do online shop and pickup. Hire someone to take care of lawn care, yard work and snow removal. Hire a pet walker. Compile a list of restaurants that do delivery and food services that provide meals that can be kept on hand to use later. Visit - caregiving can be lonely and having friends come by can really help lighten a bad day. Bring a tray of coffees or snacks from the local shop, and don't outstay your welcome.
I agree with everything you listed! The biggest help to me has been with all of the other responsibilities outside of caregiving. It’s nice when family/friends can take some of those things off your plate once in a while!
@Sandra2424... I have said for years that finding a good..I mean REAL good Support Group is like trying to find a GOOD pair of shoes or a GOOD bra...You have to try on several before you find the one that makes you feel comfortable. I suppose it is the same for social workers as well. I know it is that way for caregivers. I went through many that were ok, a few that were terrible and the last two were simply angels. So please do not give up on Support Groups. Don't give up on Therapists, Social Workers or Caregivers.
"Loved Ones" is a common term throughout support groups, social workers, even news reports where they speak of loved ones dying in plane crashes, and written advice. It is a politically correct term to call people being cared for to try to humanize them. It can be guilt producing for care providers who do not feeI love. I have spent 40 years in healthcare and it is prevalent.
I tried support groups, presentations by social workers for caregivers, etc. The thing that really hurt was their use of the term "LOVED ONES" used to refer to the people we are caring for. Do this for your loved ones, do that for your loved ones. I was very burned out from caring for my mother and monster may have been a better term for her than loved one, at least at that point in my life. I felt very judged and guilty because I wasn't doing well and didn't have much love left. I even told one of the social workers that they should use a different term. I suggested using something like "person you are caring for" or "person needing care." I finally left the group in tears because I couldn't stand it. I have the feeling that many caregivers are taking care of friends and relatives for whom they don't feel much love, at least at the moment they are doing the caregiving. I just flinched every time I heard the term loved ones.
I'm on your page..relatives and friends say "you are so good to take such good care of him". What is a spouse to do, leave him in the crawl space! No one stepes up to give us a break.
Useless: "Find time for self care. Make time for your own Dr. appts. " What would have been helpful, but I did not have: A sibling to help and split duties with. Someone else to transport mother to the 39 plus out of town dr appts. Someone else other than my husband and myself to manage her house when things broke (and it was hoarded and in bad repair, so full of broken things. Someone else to take her elderly dog to the vet. I watched my MIL and her sister both 70 plus, manage their 100 year old mother by alternating weeks "on duty" while the other traveled, taking turns taking their mom to the dr. etc. Them having each other is the only way they managed. The last two years or so they were also able to hire private aides who were very good and caring. I had none of that.
Lots of grab bars. Grab bars by the doors leading to the outside. Grab bars by the toilet and going into the shower, and the stairwell leading to our basement. We had grab bars all over my parents' house. You can never have too many. I think it helped, we didn't have many falls.
Make sure there is a walk in shower with a seat, get rid of the bath tub.
One good thing was our local senior center. They were able to bump mom up the four year waiting list for Meals on Wheels, and also I (as the lone Caregiver) was able to get a small check of $160 a month from them to use for diapers, creams, etc. That truly was a massive help to me.
Also, Mom's insurance providing access to us renting a Hospital Bed, and a Hoyer Lift so I didn't have to keep lifting her in and out of bed.
Being the only Caregiver - (unpaid) there was no day to day help.
However, the one thing that I remember that *sounded* good but was USELESS were stupid articles telling me to "take care of myself" and make sure "to ask for help." haha Yeah, right - when it was just me and bed bound Mom. Very, very, very irritating to read that garbage time and time again.
The whole "care for yourself" is utter horse apples. No suggestions as how to locate the magic care Fairy who will dispense their expertise, spells upon the person with dementia and freeing you up to take a round the world luxury cruise. Like where do these people come from who write this utter garbage? Sure, I'd like to take care of myself. A weekend in NYC, museums, music, restaurants would do me a world of good. And when I get back, the person I'm caring for had better be in better shape mentally than when I left.
I would second Rosered6. My parents moved to an independent living apartment in September due to my dad's dangerous decision making. He hates it there. My mom, who is his primary caretaker and totally independent herself, doesn't really like it but knows that if they move home her burden will increase. Having someone other than us (secondary caretakers) visit them regularly would be so helpful. My dad says things like, "I'm just sitting in this apartment waiting to die." Yet, he won't go places, do activities, or sit and socialize with other residents. He is definitely an attention seeker and that behavior is getting worse and worse with his dementia. I am losing my ability to empathize. I would love for someone else to give him attention.
I will add what sounds good but is totally useless? ALL of the government "help" agencies and support group meetings and caregiver class opportunities. I have called and left messages...never returned. I have asked physicians for help...they refer to these agencies. I don't have time for support groups or classes. We need actual assistance, not words. These programs are all about redirecting us the same way we are redirecting our Alzheimer/Dementia loved ones. They don't have real tangible assistance. They have words....lot of words....no tangible help. Totally worthless.
Caregiver support groups can intensify the feelings of inadequacy and unhappiness because we often take on the added miseries of others in the group. Instead of only being depressed with our own situation, we're then depressed about everyone else's too.
Plus the facilitators of such groups don't seem to have the training they need to make the group meeting a positive experience. Sometimes one attendee grabs the narrative and you're listening only to her spiel about blah blah blah. When others can't participate because she's hogging all the attention, they're being denied their chance to vent or make friends of whatever. So, why attend? And anyway, we need to get home before Aunt Myrtis has her next bowel movement.
My sister was the primary caregiver for our mom when mom still lived in her own home. Now my sister is mom's primary visitor (she goes almost every day for a few hours) at the assisted-living facility. I think my sister appreciates it when other people visit mom, either when my sister is there or not. For example, I live in a different city, I still work, and I try to visit mom and my sister once per week.
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helpful--if you hire outside caregivers to supplement I found locally owned independent agencies were much easier to work with (not the national franchises.)
helpful--if you have caregivers in the home treat them well. They have a lot of job options.
helpful--Pay generous Christmas bonus. No one quit after I started this and this was during Covid times, very difficult to staff.
helpful--if your loved one has dementia/alzheimers hire CNA's that have hard core dementia/alzheimers experience. I had to tell the agencies to only send CNA's and not to send the untrained home aides. The untrained home aides were nice ladies but not up to the job.
neutral--I kept the Wifi going. I used it plus I gave Mom's caregivers the WiFi code. I had 3 caregivers get their college degrees while working for Mom and they used the WiFi for college projects. One got her RN, one got her social work degree and one got her mortuary science degree.
neutral--I kept paying the cable tv bill. If it were just me I would have cancelled the cable. Mom did not watch tv and I did not watch tv but I kept it going for the caregivers that we used. It made for a better workplace environment.
Helpful for me:
Having a private pay aide who was flexible (agencies had a minimum number of hours…more than I needed)
Meals on Wheels
Getting equipment (shower chairs, commode, wheelchair) from my town's Senior Center
;Caregiver support group (local, in person)
Visiting Nurse services (including PT) after hospital stays services for her final weeks and grief support after
Motorized stair chair
Not as helpful:
ehab stay at a Nursing Home after a hospital stay (switched to Visiting Nurse)
Palliative Care (as they could not prescribe)
Pain Clinic (treatments that quickly became less effective, rules required an in person visit every month to renew pain meds, random drug tests one keeping us there for hours)
Not Helpful:
Referral service who kept calling even after I said I was all set
Keeping an updated listed of meds (with dosage and how many times a day taken), and a list of all doctors with their addresses and phone numbers. I also like to keep a written schedule of when his meds are to be given in case something happens to me. I keep all this in notes section of my phone (as well as a hard copy near his meds at home)so I don’t have to carry papers to every doc appointment and then have it handy if end up in ER for any reason.
Equipment: Raised toilet seat with arms and “funnel” that protects splatter, shower chair with arms, liquid soap (bars have been a fall hazard), lanyard medical alert with GPS, appropriate walker with basket and a tray that can fit over the walker and be a little desk or snack tray, desktop magnifier with light, easy chair to relieve swollen feet/ankles, good lighting with LED bulbs that don’t get hot if left on for long periods, electric blanket, amazon portable ramp for use with wheelchair/transfer chair, foldable transfer chair, extra sets of sheets (and sheets that come with a little tech pocket sewn into sides—to hold electric blanket controls), lots of chuck pads, good disposable underwear and bedside disposable washcloths. Nail cutter things that look almost like pliers—work better on thick fingernails and can be more precise. Kindle or IPad—lighting and fonts can be adjusted so care recipient can read or play games, listen to audio books and music, etc. A supply of wound care stuff in case of a skin tear (skin becomes very fragile and just bumping against a doorway or something can cause damage at times—especially when on blood thinners). Battery scooter was excellent when his eyesight allowed it to be used safely. Slippers with hard sole and Velcro that can be adjusted if there is swelling (on Amazon under diabetic care—even if don’t have diabetes they are useful. Dad wears them as shoes everyday ). A blood pressure machine (arm cuff type), scale, oxygen reader thing that fits on finger, thermometer . I have found that notebooks I can use to record BP, med distribution and times, weight, any unusual symptoms or doc discussions/instructions are great.
Air fryer and crock pot help with easier meal prep (for carer in our house). Keurig coffee machine where there is no “pot” that can be dropped/broken. Wallet with Apple AirTag pocket.
Services: PT whether in home or out! In home nursing. Every other month podiatry for nails. Great and accessible docs (love portals if they are really used by doc ). Insta cart for days I just can’t get away to shop.
Support: Friends checking in for a chat. If care recipient has any friends who could still drive safely, I know both carer and care recipient would LOVE for them to take the recipient out for a meal or coffee or outing (we have no one, but this would be heavenly!). We have not experienced this in person as a visit, but the person I care for has someone who calls him every other day for a long chat. What a blessing for the care recipient to have someone outside the home to engage with! I am so grateful that my sister-in-law took this up after by brother died.
Not so useful to us (I have wasted my money on): Elliptical that you use while sitting in chair (dad hates it and won’t use it), regular nail clippers, notebook computer (he aged out of being able to really use it because of eyesight and somehow constantly ended up with security issues), online banking (great if care recipient can use it safely, very dangerous if they can’t or they invite security issues onto their computer. It’s great for your use FOR them if they allow it as my dad does). Some might find them useful, but an “active engagement” person offered by a local care management firm didn’t work.
- This forum
- Understanding how Medicaid is state-run and varies greatly (and basics of how it works in our state)
- Understanding how county-based resources vary & what we had access to
- Plastic portable urinal for FIL (vs. him spraying half the bathroom)
- Automatic/movement-detecting lights all over the place
- Touring multiple AL/MC facilities
- Having help through https://twincitiescare.com/ (I wish this model existed for all of you everywhere!)
- Meals on wheels
- Setting up POA & healthcare POA
- Grocery/etc delivery & curbside pickup
- Automating all bill paying
- Centralizing all account details
- Switching to geriatric specialists who understand Medicare & Alzheimer's
- Using the 8-wk Medicare home help after every incident/assessment
- Maximizing VA benefits (in-home caregiving, equipment, Rx, meal supplements)
- Preplanning/buying funerals
Didn't work for us:
- Installing bidets for change-resistant seniors
- Thinking we could reverse declines with the right food/therapy/etc formula
- Taking responsibility for others' happiness
- Believing in the security/dependability of sibling relationships
And I know from this forum specifically, the absolutely most useful thing we have had going for us is kind, loving, mostly-compliant seniors. I seriously cannot imagine going through the amount of work and stress and responsibility caregiving entails to entitled, bi***y, narcissistic individuals who having built up a history of providing care and love.
Finally, one of the most valuable things I've obtained/learned is how to leverage this knowledge for myself and my husband. Knowing more about the systems, funding, physical changes, etc, helps me plan better for us and reduces some of the stress that comes from putting on blinders about the future.
To all of you who have responded, it is SO VALIDATING to hear that others find the "be sure to take care of yourself" advice that is EVERYWHERE, in every article, seminar, conference, and support group, to be USELESS.
I found all the self-care platitudes to be insulting and asinine during the years I was the hands-on caregiver, and I honestly thought there must be something wrong with me because "everyone" kept recommending self care and I could not figure out how to manage to do it--unless "self care" means sobbing in the shower every night.
I still feel pretty overwhelmed by the enormity of managing my mother's care, finances, taxes, insurance, doctor appointments, meds, emergencies, etc., etc., but I do have actual time for actual self care now that she has a 24/7 team looking after her safety and physical needs.
If I never again read another stupid article titled "10 Helpful Tips for Caring for a Loved One with Dementia," it will be too soon.
So, thank you everyone for your honesty on this topic.
The needs of the specific person dictate what actually helps day-to-day.
It depends on how the brain is functioning; degree of dementia.
What I did (do) working with elders -
Listen.
Assess.
Observe.
Realize how to proceed is often trial by error. It isn't one size fits all.
Take notes (useful for MD / facility management and tracking changes).
Support where they are mentally and in all their abilities / cognition.
Staying calm.
Taking breaks as needed (self-care)
Responding in ways that do not set up an argument as the person in need will usually (or always) believe they are right and they are fighting for their independence (whatever they have or believe they have).
Always bring compassion to the present.
Realize a person declining is scared.
See their life / situation from THEIR POINT OF VIEW.
Gena / Touch Matters
I've tried to offer connection to other people caregiving. I have good friends whose son had a brain tumor and they became full-time caregivers to him as his health declined - I texted almost every day - just to say I was thinking about them. I told them I was running errands in their neighborhood and offered to pick things up at the store (even when I was nowhere near their neighborhood). I offered specific help - hey, we just had a windstorm, can we come rake the yard? I know you have a long day of appointments on Wednesday, can I walk the dog? Other days... can I walk with you when you walk the dog at noon? They craved news from the "outside world" and I obliged talking about my family's activities because they were tired of talking about treatments - they needed distraction. I told them from the beginning that they didn't need to respond to me - I knew they were overwhelmed. They've said that knowing they and their son was so loved really helped them through that time.
MedPack® Medication Packets | MedPack
1. online pharmacy like Amazon using the PillPack system that presorts and labels the daily medication.
2. Living in an independent facility that provides 2 meals a day and weekly housekeeping
3. Online grocery delivery that brings food to the door
4. Dryment pajamas that reduce nighttime incontinent leaks
5. Caregiver assistance programs through state and local agencies (currently getting 1-1 counseling and respite care)
I care for husband. I do not refer to myself as a caregiver-caregivers get to go home after their shift and see friends, take hikes, go to movies or dinners, Wives cant do any of those things without hiring someone which then defeats the point.
No free assistance programs where I am.
Keep your great attitude.
things that don't help-saying what do you need or I'm here to help if you need me-sounds good but to the caregiver it's more to think about or plan out. If you want to help
just find a way yourself and do it!
lastly, something no one ever did for me that I think would be great for a caregiver-plan a day for them away from their person and set up the whole thing-a replacement caregiver for the day included...let them feel cared for.
--make sure you have snow removal service
--develop relationship with local pharmacist. The pharmacist was very helpful several times for second opinions
--have backup plan re: local facilities, tour so you know what is out there
-Cleaning service--once a month, or biweekly, or weekly, whatever you can afford
-Septic pump out--if you have a septic system get it pumped out on the recommended schedule
-Fix broken things--several others have mentioned. This was constant. Something was always breaking: blender, washer, dryer, wifi network, frig,
oven, irrigation, locks on doors, car, cable tv, hvac, well water softening system etc.
-Build a network of local repair guys. Pay them promptly. Be nice to them.
You need these guys for the stuff you can't fix yourself.
-Have PCP prescribe Physical Therapist to come out to the house. He recommended what kind of grab bars to get and exactly where to install them.
--Be creative about services/vendors in your area. Mom's house had a water softening system due to the iron in the well water. The problem was you had to lift a 50 pound bag of salt and dump in the top of a tall tank. This was very difficult for a woman to manage and we had to do this about every 8-10 weeks or so. After struggling with this for years I learned the water softening company would come out and do this for very very little money. They were hired.
Useless--the "Be good to yourself" mantra. This was useless
Mixed--Let go of anger that you have at family members not helping.
I carried this anger at my sister for 6 years for not even visiting once in 6 years. It would have been healthier if I had been able to let this anger go.
If the grocery store overcharged my Mom even 10 cents she wanted me to go back to the store with the item, the receipt and grocery ad. So I just pretended I went back to the store, as it would have cost me more than 10 cents in gasoline. I gave Mom a dime out of my own pocket.
Oh, if you are caring for both parents, make a doctor appt for both of them at the same time (if they both see that specialist). One thing I learned on the paperwork that the front desk gives you to fill out for them... I just drew a line through the paperwork and wrote "same as before".
Yard maintenance guys on a schedule.
House cleaner either couple time a year if the well spouse or live-in family can do weekly chores. And they move seasonal stuff in & out. Or weekly housekeeper if not.
Bathrooms made as ADA compliant as possible.
Unhelpful: Nothing irks me more than yet another suggestion or reminder to "take care of yourself" !! What does that mean exactly?! The people who utter such nonsense have obviously never been stuck providing 24 hour care for someone, with no help!
My parents hire a housecleaner to clean their house weekly. They could afford to gift me a one time housecleaning. But, they don't. That would be helpful!
They could stop inviting themselves over for dinner once a month. Whenever MY grandchildren come over, my dad and stepmom expect they should be included, but they are actually too busy for family, so it feels belittling as they consult their busy schedule to find an hour on their calendar that works for them to come over and invade my house, while I am taking care of a bed-ridden spouse, 3 grandchildren, and making dinner for EVERYBODY!
If you have a family member or a friend who is taking care of a disabled person full time, it's ok if you don't feel compelled to help with the hands on. Understandably, that makes some people really uncomfortable. BUT, Don't make everything about YOU and expect the carer to do things for you in their "spare time"!
Don't come over empty-handed and expect the caregiver to play hostess! Bring coffee, snacks, a meal. Clean the dishes in the sink, if there are any. Run the vacuum for them. Fix something that is broken, that the caregiver hasn't had the time or money to take care of. Engage with the ill family member - sit and talk with them, listen to them, bring them something to eat, just keep them pre-occupied for a few minutes! No one wants to do that, because it is uncomfortable, or unpleasant. But what a relief to the caregiver who does it DAILY!
I have said for years that finding a good..I mean REAL good Support Group is like trying to find a GOOD pair of shoes or a GOOD bra...You have to try on several before you find the one that makes you feel comfortable.
I suppose it is the same for social workers as well.
I know it is that way for caregivers. I went through many that were ok, a few that were terrible and the last two were simply angels.
So please do not give up on Support Groups.
Don't give up on Therapists, Social Workers or Caregivers.
No one stepes up to give us a break.
Make sure there is a walk in shower with a seat, get rid of the bath tub.
Also, Mom's insurance providing access to us renting a Hospital Bed, and a Hoyer Lift so I didn't have to keep lifting her in and out of bed.
Being the only Caregiver - (unpaid) there was no day to day help.
However, the one thing that I remember that *sounded* good but was USELESS were stupid articles telling me to "take care of myself" and make sure "to ask for help." haha Yeah, right - when it was just me and bed bound Mom. Very, very, very irritating to read that garbage time and time again.
I will add what sounds good but is totally useless? ALL of the government "help" agencies and support group meetings and caregiver class opportunities. I have called and left messages...never returned. I have asked physicians for help...they refer to these agencies. I don't have time for support groups or classes. We need actual assistance, not words. These programs are all about redirecting us the same way we are redirecting our Alzheimer/Dementia loved ones. They don't have real tangible assistance. They have words....lot of words....no tangible help. Totally worthless.
Plus the facilitators of such groups don't seem to have the training they need to make the group meeting a positive experience. Sometimes one attendee grabs the narrative and you're listening only to her spiel about blah blah blah. When others can't participate because she's hogging all the attention, they're being denied their chance to vent or make friends of whatever. So, why attend? And anyway, we need to get home before Aunt Myrtis has her next bowel movement.