How can I determine just when I need to have someone to help me at home? My LO seems good one day then confused the next. I'm not sure how she will take if someone comes to help.
Since you're asking the question, I think the answer is NOW. YOU need some help. YOU need some time to yourself. YOU need a break. And deserve it. Caregiving is not easy.
So, of course, most people being cared for do not think they need help nor do they want a stranger caring for them. On one hand, too bad. They don't always know what they need or how difficult their needs are for their caregiver to deal with.
One way to deal with this is to hire someone to help you. Someone to help with the daily household grind. Cooking, cleaning, laundry, etc. While they're doing that, maybe you can slip away to the store, to the park for a walk, to the gym, out for coffee with a friend.
If LO balks, that's kind of OK. Tell them, it's for YOU. Don't feel guilty about it and enjoy having at least a short time to call your own.
At some point it about YOU, not the person for whom you are caring.
Are you exhausted and worn through, or do you feel you can continue in the role of caregiver?
Starting in home care when the patient is lucid enough to recognize the helper is better than bringing in someone they don't know and can't wrap their minds around 'knowing'.
Many people have good and bad days. You probably would love some help on the 'bad days', I would imagine.
IMHO, starting while the pt can acclimate to a new face and accept them as part of the new normal is better than bringing in a new face when you LO cannot remember them.
Speaking as both a paid CG AND a daughter who gave EOL care to her dad. Dad didn't like strangers and would get frustrated at them. Family, and older CG's--he was fine with them, no matter what kind of day he was having.
I am 86, strong, healthy, med free, and pain free. i am so very thankful to be independent and happily living alone in my lovely cozy home. I have LTCI; and I have instructed my son and my doctor as to which facilities i would prefer if i ever become unable to manage my own affairs. my son calls me frequently and i am sure he will know if I begin to speak and or behave in incompetent ways.I sincerely hope to never be a burden to anyone; and i hope the facilities i have picked are as good as they seem. i am so glad my son and others would visit me frequently to make sure I am receiving good care. May God have mercy on us all.
My parents are 90+ and my sister and I have struggled through this. Finally, we decided to try care.com -- and we found the 'perfect' caregiver. She only comes two mornings and two nights a week, so that allows mom time to get used to a new person in the home. BUT guess what? THEY LIKE HER! .
I do admit -- mom called her once and said she didn't need her that morning. And she sends her home early sometimes. That's ok, for now, mom still attempts to be independant and we love her for that. BUT we also know someone is there to watch and help when we are not. Mom knows she is coming, and we won't let her keep cancelling, so she now gives her jobs to do... all good. Mom is in control.
This is ONLY two mornings and two nights a week. Mom has had small TIA's in the recent past and is good right now, so we feel this is perfect timing for when we need help more, which could be soon. Let them know, like, trust the caregiver for when we need help more regularly. It will no longer be like a stranger coming into the home...
I can't tell you what 2 simple days a week mean to me right now. It's not about the money, its about peace of mind, having a full day to do what I like without worrying about mom or having to spend time here, sheer pleasure!
You say it is ok that your mom calls the caregiver to cancel? Well... what about the caregiver? People tend to forget that these are our jobs and this is how we pay our bills. I do hope, and it should be that when your mom calls or anytime these shifts are cancelled, the caregiver still gets paid. I know about this. I have been a caregiver for 30+ years and have had so many of my shifts cancelled. One month alone 75% of my shifts were cancelled. This is the "Norm" for us but should not be. We are expected to be there anytime that we are needed but "don't come this next Tuesday" for we don't need you and then they call me Tuesday morning having changed their minds. I know it is difficult taking care of someone and being responsible for their care. Just please... please be considerate of the caregivers time. We cannot just pick up shifts when others are cancelled. Hope you understand. We also make around $20,000 per year. No insurance, no benefits,
The simple answer is that when you ask this question it means that the time has come. Don't worry about how she will take it. Explain it or not, as is necessary. the hired caregiver will understand that this is a transition.
The tricky part is finding someone that you and your LO both like; someone who fits into the household. You need to build a relationship with this person, so choose wisely and deliberately.
Best case scenario, your LO will in fact see this person as a friend, and accept them without question.
I would start early actually if you go to church, some churches will have someone volunteer to come in and chat,play cards etc.. They also have teenagers who volunteer,with light housework,( running the sweeper, doing dishes,cut and rake small yards.( It's part of being a Christian and of course free.) while you can go shopping and make errand runs, have lunch.
Then when it progresses ( because you didn't mention how bad it was) look into your local health aides.
I thought about that myself, when my mom was living with us, with Alzheimer's. Between my husband and I, we were able to juggle schedules so that someone was always with her, but in case that wasn't going to work any more, I knew I had to think of Plan B. Knowing that my mom might be resentful of someone coming in to the house to "look after her," I thought I'd tell her that a woman was doing research on women who played golf, and she wanted to interview her. That was one of my mom's favorite hobbies. If that reasoning got old, I'd tell her that the woman was adding to her research, and interviewing women who were accountants, since my mom was an accountant. I wrote a book about how we dealt with my mom and her disease called, "My Mother Has Alzheimer's and My Dog Has Tapeworms: A Caregiver's Tale." In it, I discuss the fact that "fibbing" for their own good is the new normal when it comes to Alzheimer's.
It's time when you put the milk in the pantry and you sleep 3 hours a night! My husband has the final stages of dementia, and life is a bunch of days, each one different and sometimes strange. He does unexpected things, like taking my underwear out of drawer and placing them around the house. I have locks on everything. We have hospice at home, but the nurse comes once a week. She said as long as he eats a little and moves around he will be here for awhile. Because its hospice medicare pays the company caring for him $5400 a month. I called and asked what they did for that amount of money as nurse comes once a week. They said they are paid per day no matter what they do. He could be in a facility for that amount of money. I called medicare and that statement is correct. So social services got me a cleaning lady 4 hours a week, (she works about 3 hours) then sits an hour. I pay on a sliding sale. My kids take turns helping we are all stressed out. No one living a good life at this point. Husband also wets bed about twice a week. Wont wear anything. I ordered pads for the bed. You have to find ways to get help. We dont qualify for medicaid so eventually they will take a chunk of our income when he is placed. This disease robs everyone of a life. Nurse suggest I just drug him and put him on the couch all day. I cant do that. I get him up, shower him (dont even ask how that goes) and take him out to lunch everyday. Not a pleasant experience but HE enjoys it. If I sound glum it is because I have been going thru it 4 years already Friends walked away, everything changed. Hospice wont even cut his toenails, just file them. My husband has an ostomy so I have to change the bag everyweek. I do it after his shower. I hope you seek out help before you get to the point of madness.
If you are not happy with the Hospice you have, you can change to another. We are fortunate to have a very good team. Hospice should be able to arrange for an ostomy nurse to come and change his bag, an aide to shower him. I take my hubby to the podiatrist every 6 weeks since he can no longer cut his own and I would need a side cutter to cut them. Medicare covers it. Does a social worker come out every two weeks? We have her direct number if we have questions. Hospice supplies disposable pads for the bed, anything we need including urinals. Hope you can find a better Hospice or maybe it is the nurse you need to change. Ours is excellent at getting his meds ordered and gives him a thorough checkup every week. Hugs
Well, wish I could be more optimistic... my wife has been in the intermediate stage for years, 8 or 10, and I can't tell any change. Her memory comes and goes, mostly goes, but some of the time, she is as lucid as I am. She has many of the classic symptoms of alzheimers and has been diagnosed by FP but never tested. But she can't manage anything, medicine, TV control, wall thermostat, and I have forbidden her to go near the stove or microwave after she set the curtains on fire. I am 81, she 83, and I had my son come out yesterday and formulate a contingency plan for possibility of my heart plugging up again, or something else. But, as I told him, even though we have her complete agreement, tomorrow, she may not even remember he was here, much less what we spoke of! Good luck to you.
FYI: The microwave, even if older, has a safety feature. If you press and hold the Stop/Cancel for about 3 seconds, it locks the control panel. Repeat to unlock. My much older microwave has this "feature." I believe it was a child-proofing addition, but it works for those with cognitive issues as well! I had no idea this function was there until our mother managed to lock hers and YB had to unlock it. I had to ask him how this works!
Newer appliances have this "feature" as well. I bought this place about 6 years ago and had to buy new stove, washer and dryer. All have a control lock feature. No kids or people to thwart, but my cats would sometimes turn the control panel for the washer or dryer on when they jump up onto it. I lock it so that they won't turn anything on!
If the appliances are older, most have removable knobs and the oven door usually has a physical lock mechanism. You could remove the knobs and lock the oven door, just in case. If you happen to be preoccupied elsewhere, it would prevent her accessing them. Gas appliances might be more difficult to child/cognitive proof. The only solution I can think of there is to replace it/them with electric appliances. Thankfully mom replaced her gas stove years ago, long before dementia kicked in!
As for the thermostat, mom had a habit of messing with it sometimes. I arrived one very warm/hot day to find her place like a sauna! She had the manual setting on heat, not cool, so the AC wasn't running (the heat wasn't either, but the AC wouldn't come on because of this!) YB replaced it with a Nest thermostat, which she didn't know how to make changes to and he preset times/temps. He could also monitor it and adjust it remotely (so long as there is WiFi in the place.) Otherwise, you should be able to buy a cover that would go over the thermostat that prevents her messing with it. They do have these, as places I have worked don't want employees "adjusting" the temp, so this keeps the employee hands off!
One item that was a bugaboo (she was living in a condo alone) was the wall phone. She would sometimes manage to turn off the ringer, so we couldn't get her on the phone! The hand-held units that came with it would periodically get "lost" until we could locate them. One neighbor was helpful for the phone, if mom could hear the doorbell or knock (hard of hearing and would forget to change the hearing aid battery!) Once I had to get a courtesy check by the police. The phone had space for programming 4 names and pic, but I just put our names there. The officer was smart enough to push the one with my name, then asked me to call back - she figured out the volume problem and fixed it! I had considered setting it to the highest volume and trying to break off the control, but never did.
I would say when you have to ask the question, it is probably time to start making a plan. Why not find someone to come in one or two days a week to 'help you'. You would be there plus this caregiver to introduce them. If loved one seems a little put off, explain that you need some help because you have been really tired. At least you can test it out now and have another person coming in so your loved one gets used to the idea --- and so that loved one is familiar now with this person.
This covers what I would suggest. Have them there when you are, and you can even introduce them as a friend who is here to help YOU. With dementia, you may have to do it multiple times, as she might forget who it is. If possible (ask permission) have a picture of the person that you can keep handy where she can see it often. I've found that as the condition progresses, out of sight = out of mind. My mother used to ask about my brothers. One isn't local, so doesn't visit. The other doesn't generally (I've given up pestering him - it was TOO much effort and disheartening.) Of course visiting was stopped, and only recently have we been allowed outdoor visits, but prior to that she stopped asking me about them. She still knew who I was before the lock down, unclear if she does now - I had a brief visit for her b'day, but couldn't tell if she was aware of me or why I was there.
Over time, as she gets a little more accustomed to having this person there, you can make brief forays out to run errands, take a sanity break, etc. Increase the time away as you can. While the primary need is to help with her, you can also (check with agency about what "tasks" are allowed - general househelp should be acceptable!) have the person help you to help her by tackling some house chores for you. Given her age, you are up there in years too and likely can use the help! Start with a few hours several days/week and increase if/when you feel the need. At least then if you are indisposed, there is someone who can step in and ensure she is cared for. Agency might be best, so that there are others who can fill in as the needs increase (no one person, not even you OP can tackle this 24/7!)
So, of course, most people being cared for do not think they need help nor do they want a stranger caring for them. On one hand, too bad. They don't always know what they need or how difficult their needs are for their caregiver to deal with.
One way to deal with this is to hire someone to help you. Someone to help with the daily household grind. Cooking, cleaning, laundry, etc. While they're doing that, maybe you can slip away to the store, to the park for a walk, to the gym, out for coffee with a friend.
If LO balks, that's kind of OK. Tell them, it's for YOU. Don't feel guilty about it and enjoy having at least a short time to call your own.
Great comment!
Are you exhausted and worn through, or do you feel you can continue in the role of caregiver?
Starting in home care when the patient is lucid enough to recognize the helper is better than bringing in someone they don't know and can't wrap their minds around 'knowing'.
Many people have good and bad days. You probably would love some help on the 'bad days', I would imagine.
IMHO, starting while the pt can acclimate to a new face and accept them as part of the new normal is better than bringing in a new face when you LO cannot remember them.
Speaking as both a paid CG AND a daughter who gave EOL care to her dad. Dad didn't like strangers and would get frustrated at them. Family, and older CG's--he was fine with them, no matter what kind of day he was having.
I do admit -- mom called her once and said she didn't need her that morning. And she sends her home early sometimes. That's ok, for now, mom still attempts to be independant and we love her for that. BUT we also know someone is there to watch and help when we are not. Mom knows she is coming, and we won't let her keep cancelling, so she now gives her jobs to do... all good. Mom is in control.
This is ONLY two mornings and two nights a week. Mom has had small TIA's in the recent past and is good right now, so we feel this is perfect timing for when we need help more, which could be soon. Let them know, like, trust the caregiver for when we need help more regularly. It will no longer be like a stranger coming into the home...
I can't tell you what 2 simple days a week mean to me right now. It's not about the money, its about peace of mind, having a full day to do what I like without worrying about mom or having to spend time here, sheer pleasure!
The tricky part is finding someone that you and your LO both like; someone who fits into the household. You need to build a relationship with this person, so choose wisely and deliberately.
Best case scenario, your LO will in fact see this person as a friend, and accept them without question.
It's time.
Then when it progresses ( because you didn't mention how bad it was) look into your local health aides.
Good luck with Mom ❤️
The microwave, even if older, has a safety feature. If you press and hold the Stop/Cancel for about 3 seconds, it locks the control panel. Repeat to unlock. My much older microwave has this "feature." I believe it was a child-proofing addition, but it works for those with cognitive issues as well! I had no idea this function was there until our mother managed to lock hers and YB had to unlock it. I had to ask him how this works!
Newer appliances have this "feature" as well. I bought this place about 6 years ago and had to buy new stove, washer and dryer. All have a control lock feature. No kids or people to thwart, but my cats would sometimes turn the control panel for the washer or dryer on when they jump up onto it. I lock it so that they won't turn anything on!
If the appliances are older, most have removable knobs and the oven door usually has a physical lock mechanism. You could remove the knobs and lock the oven door, just in case. If you happen to be preoccupied elsewhere, it would prevent her accessing them. Gas appliances might be more difficult to child/cognitive proof. The only solution I can think of there is to replace it/them with electric appliances. Thankfully mom replaced her gas stove years ago, long before dementia kicked in!
As for the thermostat, mom had a habit of messing with it sometimes. I arrived one very warm/hot day to find her place like a sauna! She had the manual setting on heat, not cool, so the AC wasn't running (the heat wasn't either, but the AC wouldn't come on because of this!) YB replaced it with a Nest thermostat, which she didn't know how to make changes to and he preset times/temps. He could also monitor it and adjust it remotely (so long as there is WiFi in the place.) Otherwise, you should be able to buy a cover that would go over the thermostat that prevents her messing with it. They do have these, as places I have worked don't want employees "adjusting" the temp, so this keeps the employee hands off!
One item that was a bugaboo (she was living in a condo alone) was the wall phone. She would sometimes manage to turn off the ringer, so we couldn't get her on the phone! The hand-held units that came with it would periodically get "lost" until we could locate them. One neighbor was helpful for the phone, if mom could hear the doorbell or knock (hard of hearing and would forget to change the hearing aid battery!) Once I had to get a courtesy check by the police. The phone had space for programming 4 names and pic, but I just put our names there. The officer was smart enough to push the one with my name, then asked me to call back - she figured out the volume problem and fixed it! I had considered setting it to the highest volume and trying to break off the control, but never did.
Over time, as she gets a little more accustomed to having this person there, you can make brief forays out to run errands, take a sanity break, etc. Increase the time away as you can. While the primary need is to help with her, you can also (check with agency about what "tasks" are allowed - general househelp should be acceptable!) have the person help you to help her by tackling some house chores for you. Given her age, you are up there in years too and likely can use the help! Start with a few hours several days/week and increase if/when you feel the need. At least then if you are indisposed, there is someone who can step in and ensure she is cared for. Agency might be best, so that there are others who can fill in as the needs increase (no one person, not even you OP can tackle this 24/7!)