Mom and dad BOTH live with my husband and I and they are divorced. Mom is 90 and doing okay, dad is 94 and has dementia. Every minute he asks me the same question, over and over, and cannot hear my answers even with good hearing aids. I feel guilty like I’m not responding to taking care of him because he doesn't realize that I’ve already responded and done what he asked 4 times in the last 4 minutes - but he doesn’t remember. It’s horrible. I can’t solve his problems with itching, nor can the doctors. I put cream on constantly, have pills that I give him. But he looks at me like “can’t you do something to get rid of this itching??? And he looks at me like that every 5 minutes. I feel that I'm literally losing my mind and I dont know how much longer I can handle it, on top of his full time care and caring for my mom. I do not have a life and the life I have is consumed with groundhog minute, not Groundhog Day, but minute. Every minute. I feel as though I am literally going insane. I take such goood care of him, I’ve devoted every day to that, and yet he doesn’t know it and it just makes me feel so guilty.
Try to resist being drawn into the Groundhog Day - I went into the basement and smashed ugly plates to vent my frustration. Totally understand.
it took a while for me to understand limited visits that smacked of indifference because “I can’t deal with it.” (We’re talking a 40 year marriage.)
But with Covid isolation, I wasn’t witnessing the loss, the agony and fear, the helplessness and doubt, the deterioration, the emotional toll.
We all learned:
It hurts. For everyone. Every day before and after death.
Dying’s not just about the one person..
You can’t do it alone, so don’t expect you can and get as much help YOU need.
You can’t fix incurable illnesses unless you’re God, so don’t guilt yourself for being mortal.
You have to take care of yourself to be a caregiver and deal with the aftermath.
This business of dying can be messy.
The day you start grieving is well before the person dies.
The person you’re caring for loves you and wouldn’t want to you to suffer even if they’re causing the pain. Trust that love; it supersedes a bad attitude.
Know you’re doing the best you can even when you’re at rock bottom and nothing gets done. To quote an exec “I don’t know anyone who comes to work intending to do a bad job.”
A neighbor (psychologist) said about Covid isolation and caregiving “For now it may be that the best you can do is just be.” Maybe you need to share the burden and find time to just be. 🕊
Self-care is important so need to think out of box or your health will go, and they might not have you to care for them.
Seek alternative measures now, it is time for all of you to find peace, hire companions for Respite when you have someone at home, and this might make everyone better when one is not living in discomfort, your mother falls is sign for a different assessment. So she is not safe if can no longer walk, she requires a physivisn to render diagnosis for falling., refer for rehab to improve or get it at your home, many times this is a definite decline. If it is both require hospital beds, and I would get sitter at night to get some rest.
You need help now. So, get it and let their funds pay for this assistance. You are very loving and doing a great job, hire someone, train them, get organized with their meds, play soft music in their rooms, and get them mellow.
Remember every complaint of dis-ease is not due to disease, our minds create dis-comfort which is why at the end of our lives, we should be desirous of love not money, praise and the job that we all covet now, is no longer important...only if we could fast forward to make time for out lives and loves. Growing older brings on many issues that cannot be removed with a pill. I counseled many geriatrics and just plain living too long unhappy brings on many dis-eases that cannot be treated.
Add to that your father'xs Dementia and confusion, and he must be miserable.
I tried calamine lotion, hydrocortisone, Benedryl, oral antihistamines, hypo-allergenic soaps, moisturizers, menthol lotions, always loose, cotton clothe--with no relief from the itching. Sometimes I used lidocaine numbing cream to dull the sensation and finally I would use Ben Gay and similar "icy/hot" arthritis medicines just b/c the burning of those at least distracted from the itching. After 14 months my dermatologist prescribed Triamcinolone steroid ointment to help calm the itching and I ran across the possibility of histamine intolerance. That was new to me, but is something that can develop or become a problem as one ages.
There are many common foods that trigger an itching response to histamine: egg whites, dairy, wheat, citrus and other fruits, nuts, leftovers! . . . To reduce the itching, those foods must be avoided. These were at least half of the foods I could possibly eat, so eliminating them is sad and limiting, but it is worth it to avoid the life-altering severity of the itching.
I had never heard of histamine intolerance before, but avoiding those foods has definitely made my life more tolerable.
Excuse my long saga about histamine itching, but if I have learned anything that might help someone else, I'd like to pass it along.
Firstly, you are doing great!!!!
Remember, this group of folks is a Godsend. I came on this site many times to vent, just get reassurance that I was not a bad person for getting frustrated while caring for my sweet 89 year old, Parkinson’s and dementia ridden Mother.
I’m from a different perspective as my dear Mother has passed and through it all, I can look back and feel so content about my mom’s care, which is priceless. It was, without a doubt, the hardest job I have ever done.
It was rough and there were some days I thought I just couldn’t do it another day, but you know what? I did and through that, gave my mother the best care that she could have possibly had.
I think the biggest advice I can offer, like others have mentioned, is to enlist some help. Find someone trustworthy, through church or online group or referral, and have them come in however often you need them.
A sibling would be helpful, but if you are like me, I have one, but that was not an option in their eyes.
When a parent gets on hospice, a difficult decision to make, there will be resources for help in bathing and alleviation of doctor visits.
Hang in there, you are doing a great job! Best of luck to you and your family.
Not setting boundaries is not doing 'great.'
A person needs to avoid burnout and having a breakdown in order to be there / be available to provide care and support another needs.
Key is learning when to reach out for help to ensure parents are safe and cared for; learning to let others in so the primary care person can take a break / regroup and not burn out. As you say 'enlist some help.'
**** I feel that many people on this site:
- applaud a person who burns their self out at the expense of their own well-being/health; (and thus, ability to continue to do the caregiving needed);
- by burning out, ignoring their own healthcare needs
- don't address dementia behavior and what is really helpful
What would be helpful is
(1) reaffirming that mental facilities / cognitive functioning / hearing change and telling a person the same thing four times is not helpful; figuring out other ways of communicating IS helpful, i.e., a dry erase board; holding a person's hand, looking into their eyes and smile. Stop talking.
(2) dealing with what is underneath the guilt or feelings of 'not doing enough.' I believe these feelings are not out of 'love'; they are do to low self-esteem and no skills in boundary setting (most do not have and find themselves setting 'no' boundaries = burnout / anxiety / exhaustion / depression.
(3) Realizing that a person with dementia or is disabled/very needy will continue to behave in ways to get their needs met as best they can - by doing that works - until the primary caregiver changes their behavior, and understanding of what is needed.
I understand how difficult this is for a family member. It is critically important to enlist as many friends, church volunteers, neighbors, and split up the essential needs/duties. And for the primary care provider to take 5, 10, 30 minutes or 1-2 hours, or a half a day off. Take a walk for a few minutes; be aware of the beauty of nature "shift the mind set" -
I make myself sit / meditate for 10-20 minutes most days. I focus on my body and where I feel good energy or where I feel tension. I am present. I think of something(s) pleasant. There are many ways to 'leave' for a few minutes through meditations. Gena
Short term -
Skin - try the organic coconut oil for Dad's skin. If that doesn't work (I will be surprised) try the Cereve (expensive but good) or anything that says it has ceramides in it.
Repeated questions - he is in that phase of dementia, which usually passes only to lead to another problematical phase. Generally, nothing you can do about it. His brain no longer works the way it used to or the way yours does. He isn't deliberately trying to drive you nuts although it seems that way.
Just grunt or find one of those answers you can use for the diabolical kid who also asks you the same question over and over , like " um hum..... soon dear".
Respite care - Do you have any siblings, relatives or good friends that could help out to even give you a few hours of relief per week? Are you a member of a religious organization that might assist? Any Interfaith care giving groups in your area. They have been know to be very helpful in short term situations.
Is Dad able to participate in Adult Day care situations? It may be beyond him at this point and you would have to pay privately until he qualified under Medicaid but again your Office on Aging can help with this. Ask them also about any free legal consults you can get for what is the best way to move forward for Mom and Dad. There is usually a group that will do initial 1/2 consults for free. After that you would have to pay. And make sure you have what I call the VIP (very important paperwork) all lined up - DPoA, Medical Proxy and Advanced Directive (might be too late to get this on Dad if he already has a dx of dementia but check it out with the attorney........... should be a certified eldercare attorney familiar with Medicaid, by the way)
Long Term - Dementia only gets worse. He will need more and more help as time goes on (as may your Mom) and what will happen then? It is time to start researching where both or either of them can be placed so that they will get proper care. Some good suggestions here particularly about the Veterans Admin. and your local Office on Aging. In general (at least in NJ) most ALs (Assisted Livings) will accept Medicaid only after a resident has been private pay for a specific period, usually 2 years. This doesn't mean there aren't exceptions where you are, just want to remind you about it. Now if Dad qualifies for nursing home level care, there are nursing homes that have MC units and nursing homes accept Medicaid. Your office on Aging should be able to help you through the many programs that might be available to Dad including Personal Care Homes.
Actually moving him to a facility at this stage... he's going to fight it tooth and nail just just be prepared. Under normal circumstances he wouldn't drive his daughter nuts but he is not thinking normally anymore.
Sorry you have to go through this but know that you are definitely not alone. Wishing you peace on your journey... please keep us updated.
So glad you came to share & vent - it helps. Understand the groundhogs day reference, it applies to my situation now as well as Alice in Wonderland-going down the rabbit hole or sitting at the Mad Hatters tea party & living in the upside down. Everyone's advice was great Janet, key is respite for you in one way or another. I've found that living in the Alzheimer's world, think outside the box. It may be difficult but try, creativity & humor can be your saving grace & PLEASE learn to detach emotionally. Once that happens, it becomes easier to handle. When people ask what I do, I tell them I'm a single mom with an 85 y/o toddler who acts like a teenager 😂 wishing you the best and PLEASE KNOW YOU ARE NOT ALONE. sending hugs your way
My 97 yr old Dad had the itching problem and it took over a month trying different over the counter and rx meds and creams to try and nothing seemed to work.
I Prayed, Read Everything and Tried everything.
1st
Before the itching think if anything new was started on your Dad from meds to food, soap, shampoo, ect.
2nd
Change is Soap, his Laundry Detergent, Wipes, anything that is used on him or for him all to For Sensitive Skin.
3rd
Let him wear just 100% Cotton T shirts and 100% Cotton everything that touches the area that itches.
4th
Old peoples skin gets very dry and the Best Thing I tried and it seemed to work is 100% Organic Coconut Oil.
You can buy a big jar at Walmart, just make sure it says 100% Organic.
Apply to your Dad's Skin Twice a day, AM and PM.
Google Coconut Oil, it works miracles, really.
Also, make sure your Dad isn't taking a bath every night because it just drys out his skin more.
Please, rather you believe me or not, for your Dad's sake try all the above. My Dad was so miserable before and now he is fine.
Prayers
1 - Dad's brain seems to get stuck in a "thought loop." It is kind of like a record that skips and keeps repeating the same words. In his case, he keeps skipping with the same questions.... and the itching sensation. to help him, you may have to nudge him along out of the "thought loop" through diversion. Give him a task, play a movie or music, give him some art supplies, let him rub lotion on his skin, have him knead meatloaf, bread dough, play dough... anything that helps him to focus on something new. The goal is to help him get past wherever his thought process is stuck.
2 - If your dad seems anxious or agitated while he repeats the same questions, he is probably dealing with anxiety. Life can be kind of scary when nothing makes sense. I am sure that you have created a routine for your parents that helps them to feel more secure. As dementia progresses, even that routine doesn't provide a feeling of security. Talk to your dad's doctor about a prescription for an anti-anxiety medication. Just know that is can take a little time for the medications to be effective.
3 - Please, please, please add more caregivers to your parents caregiving team. You need more time off to meet your own needs - health and social/recreational. The goals for you are to have enough time off to sleep 7-9 hours uninterrupted, eat 3 healthy meals at a reasonable pace, time for your own hygiene and meeting your medical needs, and time off daily (extended time weekly) to do things you enjoy with other people you care about. Ask for help from family, friends, members of your faith community, and paid help.
2) Try to adopt a different mindset to the repetition of questions - my brother looks after his MIL who has mid stage dementia but can still go out for a car ride or with him to the shops. She repeats the same questions and same story every few minutes - but whereas like you it would drive me insane he looks at it differently - he knows she can't remember so he has one stock answer for the situation and simply repeats it without thinking about it - not something I would have thought to do, I would try and not sound like a parrot, but he says she is perfectly happy, he has no stress, and as a coping mechanism it means he can deal with her when he would not be able to otherwise.
3) You need a break - even a few hours away - can you arrange for someone to come in for one morning a week to sit with him so that you know you have a certain time that belongs to you.
4) Regarding the itching - may I just ask if you father's doctor has done a liver function test? Its just one of those strange things but reduced liver function MAY be linked to incessant itching.
Hugs to you for doing such a loving thing for both your parents.
Dementia is a horrible mind disease and people who live it don't know they have asked the questions or said the same thing 500+ times. I found with my dad I would 99% of the time just say yes, no, or nod and smile with no responses given. They won't remember anyhow. A person with dementia meets a new person every second. While this is not going to sound helpful, you should be thankful they know who you are. Many people don't know their own family and that hurts so bad.
Itching seems to be a thing with dementia, could be dry skin, could be nerves acting up or just a reflex or even thirsty. Talk with the doctor about it.
Best wishes as it is very challenging and you are doing a great job providing care for your parents.
Make sure he isn't dehydrated, use a high quality cream or lotion, I personally use cera ve (the one for rough and bumpy skin) - its more expensive but good; there are also lotions with lanolin (Amlactin) in them which are good for the skin - but I personally dislike them because they are on the stinky side - but if it works on dad's skin then stinky should be better than his skin constantly itching and dad constantly looking at you like when are you going to help me. My dad's dermatologist suggested using a cream with capsaicin in it, but the aides where he and mom lived couldn't get it of him fast enough because it burned him so much - must have been allergic to it. So if you try the capsaicin cream, do a test spot first to see if he tolerates it. I don't know as his itchy condition ever resolved itself. If that doesn't work try aloe mixed in some skin creams see if that produces any relief. Try using a detergent - labeled free or free and clear so there are no perfumes in them and stay away from fabric softeners - maybe use dryer balls.
I will say I have the same problem - my skin is always itchy and nothing ever seems to overcome it. My underarms seem oh so itchy right now - maybe it has something to do with wearing deodorant again after going without using it while not going anywhere for the past year due to COVID. Right now writing this response my arms and underarms are itching like crazy - my father wasn't the only one that tears up his skin.
And as previously suggested check with your area council for aging for resources open to your father. Are there any adult daycares in your area where you can drop him off a couple days a week - he may balk but suggest he try it as he might like it and make friends with some of them there.
I wish you and your family the best as you journey down this road.
As for dad repeating over and over. That's a dementia loop and when someone gets in one it makes no difference if you answer them every 30 seconds or not at all.
I've had dementia homecare clients who would get in a loop and keep asking the same question over and over. Sometimes more than 50 times in a matter of a few hours. Answer the the same question a couple of times and then stop answering it.
This will have no effect on them, but it will on you. To save your own sanity you have to ignore them sometimes. Like not answering the same question hundreds of times because they're fixated in a dementia loop.
If it's safe to leave them alone in a room, walk away. Also, there has to be an end of "shift" for you and time off. If bedtime is say 9pm for them, then that's it. They go to their rooms and go to bed. The same as they did when you were a kid. The only thing they're getting after lights out is maybe some water or taken to the bathroom.
If you have to ask their doctors for sedation medication or sleeping medication to put them to sleep, do it. Otherwise you will lose it, trust me.
Maybe look into some homecare to help out with some of the care during the day. Or if your parents aren't incontinent look into adult day care a couple days a week. Most adult day centers won't take clients if they're in diapers. There are some out there who will and they even provide transportation.
Please look into getting some care for them before you become the one who needs care. Keep us posted.
As usual, the first thought by many is "place" the LO. This isn't always an option. Many, like your dad, don't have the income/assets needed to pay for a facility. Many will also say NH and Medicaid, but Medicaid has income/asset limits AND generally only covers NH care, but there are also rules about who can be accepted (meaning they NEED NH care.) It doesn't sound like your dad would qualify for NH care.
Many EC attys offer a limited first consult. If you can find several who do, go discuss the situation, but be sure to have income and assets available as well as medical condition(s.)
Groundhog minute... been there! Responses, if any, should be short and sweet. If his questions are always the same topics, perhaps having prepared cards to hand to him with the responses can help, then just refer to the card in his hand? At least my mother never lived with me, or I'd be in the rubber room with you!!! Sometimes we can distract them or redirect their focus onto something else, at least temporarily, but not always.
For the itching, there's probably no real source for it, as it seems to happen to a lot of those with dementia. Can you run this by his doctor and see if perhaps an anti-anxiety would at least reduce the "itching"?
Perhaps council on aging can help. He may not qualify for facility care under Medicaid, but most states also have some funding for in-home care (limited, certainly not full time.) EC atty could probably answer the question as to whether he might qualify. Even if you can get *some* help, someone who can keep him "occupied" and out of your hair for a bit, it will help. You DO need some sanity time. If he doesn't qualify, then perhaps hiring someone from an agency, using his funds, can give you some breaks. Take the time to get out, take your mom with you and go do something for the two of you. Get tasks out of the way while he's "occupied" with the aide.
Lastly, why the guilt? Just taking him in was more than enough for you to do, you need not feel guilty! Sure, you get frustrated by his incessant queries, groundhog moments and itching, but that's normal. It isn't something to feel guilty about if your frustrations are overwhelming you. In a care facility, staff gets to go home at the end of their shift and leave it behind. You are with it all the time! You ARE doing your best, so please, try not to feel like you are failing to help him and try not to feel guilty, even if you have thoughts about giving up! Care of someone with dementia IS difficult and is more than one person should be managing.
Your father can refuse nine ways to Sunday about going into respite care for a few days. It's not his decision to make. It's yours.
You need time off from caregiving. Don't guilt yourself about putting either of your parents into facility respite care for a few days.
A few days is better than a nursing home for the rest of their lives. Let that be the choice.
YES! HE DOESN’T KNOW IT. And the REASON he doesn’t know it is because he has dementia and hearing impairment.
Dementia MEANS that he no longer has the cognitive equipment to interpret and/or respond to the care that you provide.
So, stop. If you “…don’t know how much longer I can handle it”, STOP HANDLING IT.
Research the best Memory Care facility you can find locally with a connection to a skilled nursing facility. THEN, PLACE HIM.
Many of us here have lived situations very similar to yours. We were SURE we were doing THE RIGHT THING. Some of us (me) gained 60+ pounds of stress weight, slept on floors for months to protect our LOs from falls, felt guilty 24 hours a day, and ultimately either got much sicker and sadder ourselves OR our LOs expired, OR ……….WE PLACED THEM.
Less work after placement? Less guilt? NEITHER, but for me SLEEP, seeing my mother happy and at peace, and a chance to save myself AND HER.
Think about it…….is the balance in this arrangement working for you? Think about it.
Wow. You sure had a time of it. Sleeping on the floor to protect loved ones from falls. No doctor would prescribe sedation or sleeping medication? God bless you for doing so much.
and from your profile:
"I retired a couple years ago and my mom moved in with my husband and I. Six months later my dad’s wife died suddenly and his dementia was worse than I knew and I had to take him iin also. Mom and dad are divorced and now living with my husband and I."
So...my questions are:
1. You write that you "had to take him in." ?! WHY?
2. How did you end up doing fulltime caregiving for both of your parents?
3. Do you have siblings? (Curious if you do why it all fell to you.)
4. Is a facility being considered?
5. If not, why not?
The repetitive questioning eventually stopped as the disease progressed and my mom declined more mentally and physically.
In addition to repeating things, she also hid her things and accused people of stealing them. I spent hours and days looking for her stuff all while she cried and panicked and made a scene. There were other crazy things she did that were just as maddening like stealing things from the stores, and picking all the fruits off the trees before they were ripe. One year, she picked hundreds of my oranges when they were still green. Grrr.....
I got so burned out dealing with her. She lived with my family for two long and extremely stressful years. Finally, I had to move her out before I lost my sanity.
Janet, if you want to save your sanity, you've got to put some time and distance between you and the source of your stress. No other way.
Some suggestions:
You can hire someone once or twice a week to stay with your parents so you can go out and destress.
You can find a place in or outside the house where you can go hide, relax and forget about your parents for an hour or two daily.
Your brain is always on the caregiving job 24/7. That is why you're burned out. You have to mentally clock out and not think about them for at least several hours a day, sleeping does not count.
You also need to realize that you can NOT fix their health issues, so DON'T own them. There is no reason for you to feel guilty. You can feel bad for their problems, but no guilt. You don't have a magic wand to fix what ails them.
As some point when their needs become too much and are beyond what you can provide, you need to think about placing them in a nursing home.
Also, come here to vent all you want, that helps too.
Call Council on Aging in your area. Ask for an assessment for your parents. Contact a social worker to find out what care is available for your parents. Do they have money for assisted living/memory care? If they don’t you can see if they qualify for Medicaid. Nursing homes will accept Medicaid.
You are going to burn out if you continue doing the ‘hands on’ care for your parents. Place them in a facility and be an advocate for them. Visit as their daughter, instead of being an exhausted caregiver in your home.
You deserve to live life with your husband. Wishing you and your family all the best.