Follow
Share
Read More
This discussion has been closed for comment. Start a New Discussion.
Find Care & Housing
1 2 3 4
Beautifully written and heartfelt and heartachingly true.

And to HerShe89, unless it has changed in the last year, the VA has home assist at home if you are a veteran or veteran's spouse and meet the income requirements.
(1)
Report

Thank you for writing this. But.... sometimes promises need to be broken and a care home might be a good option.
(2)
Report

I totally agree with your assessment of caregiving. Please don't feel guilty about it because, I don't care how much people say they admire you for what you are doing, it is a thankless and difficult job! No amount of time getting respite makes enough difference because you always return to the same grueling tasks of taking care of your loved one. Sure, you do it out of a sense of duty and love, promises made before you knew what it would be like.
My BIL, whom I never liked and who did all sorts of mean things to us, had a stroke in late 2017. No family, a girlfriend he continues to support but who does nothing to help with his care, and a brother (my husband)who won't force her out of BIL's house so it can be sold to help pay for NH care. BIL has lived with us for three years now and is as good as he will ever be. He will most likely out live us. Never has he said thank you for taking care of him, doesn't do anything he could do to help himself, and his care has created a whole lot of stress in our home that we don't need at out ages. He is tube fed and incontinent, although at one time he would go some times in the toilet. He can walk with a walker. We have spent numerous hours in the ER getting his tube replaced because he accidentally pulls it out.....I often wonder about that. He drools incessantly and my carpets will be thrown away if and when he ever leaves our home. Resentful, yes I am. I rue the day I agreed that he could come here. I honestly thought it would be temporary, but he doesn't qualify for Medicaid and doesn't have enough money to pay for NH care. And, he thinks he deserves to stay with us although he would never had done the same for his brother. I could go on and on but it is what it is so there is no need to complain. Just do the best you can and try hard to thank God for your ability to do the tasks you require. I pray every day that God will take him and He never answers those prayers. So, now I pray that He will get me through it because I know that one day I will be taking care of my husband and I need strength to get to that point. Thank you for giving me the opportunity to rant. I hope I validated your feelings and let you know you are not alone. I truly feel for you!!
(7)
Report

I too was in your shoes taken care of my husband for 12 long years. Everything you says is true and more. Ican only tell you nobody really understands unless you use your voice . I chose this path for many reasons but the major reason was loneliness. I don’t regret it . My husband has passed and I know I did the right thing for both of us .You have a kind soul. I know you have heard all about everyone’s opinion and remedy’s. I did find hope in taking the first step to helping myself. Please look into support groups through the churches and elder services in your community. Just one step and you won’t regret it. Look for help. You deserve it🤗
(4)
Report

To the person who wrote this, I can only say that you have expressed in ways I never could the reality of being a caregiver of an elderly parent with dementia. I have been in this situation for about three years and live alone giving care to my 100 year old mother who suffers from Stage 5 dimentia.
 
Let me say to those who have expressed the feeling that you have choices and should not now be limited by whatever promises you made in the past - while that may be a deciding factor, I am sure it is not the only one. There is the reality of financial concerns and in this country where elder care is not a priority, there are often no options for assisted living that offer respite. I live in the state of Washington and have looked in both my state and neighboring Idaho where my sister is a resident. In Washington state there is virtually no Medicaid available to assist in long term care unless it is in a nursing home. At $11,000 per month, my mother's small savings account would not go far. In Idaho, where Medicaid does come in to play, it is generally required by institutions in that state that the resident is required to pay two full years before they will be eligible. For the math impaired that would be $264,000. Even then, they can be booted out if the home feels they have reached their maximum financial limit (usually a small percentage) for Medicaid residents.
 
As for live in assistance, that was also recommended to me by my sister. Upon checking with the names they supplied, I found that even if I was willing to forego the risks of dealing with their personnel during the Covid crisis (and that is a high risk for those contracted employees), I would be paying a minimum of $700 a month for one weekly three hour visit (their minimum) four times a month. So I guess I could try to crowd everything into that three hour span, but it is highly unlikely it would be satisfactory in any way.
 
I don't know if people who blithely toss that out as an option are so incredibly unaware of the financial commitment or if they are simply trying to ignore the fact in home care by a family member is often the only viable solution. Generally, in this area, commitment to assisted living for one member of the family usually involves the sale of a home to pay for it.
(6)
Report

This is the most honest thing I have ever read about caregiving. Thank you.

I cared for Mom for 13 years, the last 5 of which were 24x7 and increasingly intense. She was the most positive, loving person and did not deserve my occasional impatience or anger. I will never completely lose my guilt over that. Outside care was never an option financially.

By the time of her last 6 months I was of course exhausted. All I did all day, every day was the same routine of changing diapers, preparing meals, feeding, doing laundry etc.; wash, rinse repeat.

And then an amazing thing happened: a sense of peace came over me and my negative feelings faded. I felt closer to Mom than I had for a long time. I felt that it was truly a privilege to care for her in her last days.

For me the reward was being able to walk my beautiful Mom down the final path, and to the gate. She was so grateful and it gave me great solace. I believe she left this earth feeling loved and cherished.
I hope some of you have the same experience.
(6)
Report

YES!!! Thank you for putting into words what so many of us are experiencing/have experienced. Perfectly put.

My Mother stated the same thing. I don’t think anyone should have the right to put this enormous, life-altering responsibility on a family member. There is NO amount of self-care that can get you back to a balanced state while you’re caregiving, and you don’t have the time anyway. As you so eloquently described, this completely encompasses your life and you will need to make a choice- do I prioritize my life or theirs? If my Mother was even a sliver her old self I would have a much harder time making that decision, but she is a shuffling, uncontrollable urinating/pooping, insomniac zombie at this point,

Once everyone here has their vaccines, she will need to live in a facility with a staff of caregivers, not two with full time jobs. I can’t ignore my health or my husband’s anymore and you shouldn’t feel guilt making a similar choice if you can. You took the baton as far as you could. Claim your life back before the stress claims you.
(7)
Report

My total sympathies. My guess it that most, if not all, primary caregivers feel as you feel, at least part of the time. Our society is extremely unfair in foisting the care of elders onto the children. It is particularly unfair when there is only one child attempting providing care. 24/7 care should be shared by at least 3, preferably 4 people. One person simply cannot do it without being totally overwhelmed by the situation, and the exhaustion.

You are also right that this is nothing at all like caring for a child. Children grow up and the work gets easier. The 24/7 aspect of caring for a new baby quickly ease. Gradually the baby's needs become less and less. The opposite is true of the elderly. Their needs become greater and greater. Even for premies (I had 2, twins) the care is much less after 4 months. Also, there is the constant reward of watching the growth of that child: a smile, the first sign of recognition of a parent's face, new abilities in evidence. Caring for a baby is a lot of work, but also continuing joy. Watching an elder deteriorate is not at all the same thing. They get worse and it can take a long time. Years. And there is little joy in watching their slowly deteriorating abilities to care for themselves.

Nobody should ever tell anyone else to care for an elder. It is too be a job to be forced on another. Nobody should ever have to do this alone, either. If there are no family resources to hire help, there should be residential care for these elders where there will be well-rested and well-trained aides to care for them.

The duty and joy of the children should be to visit these elders, listen to their stories, and share the memories of earlier years. I think there would be no joy to be found in changing Depends, wiping wrinkled old butts, or trying to wipe dribbled food off an old chin, and particularly not in listening to the complaints of an old person who is exasperated by their own growing incompetence.

Again, my sympathies with and for you. I hope you can find a way to find someone to help you. It should not fall to you, alone.
(4)
Report

We can all sympathize and relate! You really described the reality of caretaking. I couldn’t have gotten thru it (and am still going through it) without seeing a medical professional. And see a councilor who can teach you how to carve out a little Happy Place for your mental health. Check out On Line Zoom meetings for caregiver support.

There ought to be a book that is mandatory reading for everyone when they turn 50 on Taking Care of Your Aging Parent and What No One Tells You. Caregiving is all you name, and then there are those “little” details which makes it all worse. Like finding out not every organization recognizes a Power of Attorney, or you can’t just alert Social Security about an address change for your parent-you have to meet with them to see if you are responsible and honest enough to be a Representative Payee-which will require a checking acct designated for SS $ only, and yearly check to make sure everything is being spent the way they say (honestly, with the Elder Abuse that happens, I understand why they do it).

Then there is the subject of insurance or dealing with medical bills-if your parent can sign a form for insurance and medical providers that they can talk with you-but it may only last 2 years. And did you know that not all states have Medical POAs? Luckily, my dad had changed his mind and said he would move to my town into Assisted Living-but in Oregon, Advance Directives aren’t all encompassing Medical Powers of Attorney.

I am sure there is more that I haven’t experienced yet...There SHOULD be a a book, but I haven’t got the energy or room in my head anymore for the research and writing.

Good Luck, take care of yourself, and here’s hoping your parent sees the light.
(3)
Report

You hit the nail on the head - you said it truthfully exactly as it is. I have been there, done that - four times - parents, husband and a dear elderly friend. It is horribly difficult and few people can handle it well without being terribly affected and harmed. I have been harshly judged by some people on this forum who thought I was a "monster" to suggest putting people into facilities. Sometimes in life we cannot fix that which needs to be fixed no matter what we do and more and more harm is done to those who remain, and nothing good comes for the patient. Then we must be strong and place these people for their own safety and our sanity. Thank you for being honest and truthful. I say to those who have so much to say against us - wear our shoes before you judge us. You might be surprised to find out we were right in the first place. Good luck and peace to you.
(8)
Report

Thanks for sharing this and for putting it so eloquently. It helps each of us to know we are not alone in this situation. I have fallen into this role too, as the eldest and the only one not to marry or have children. I feel my mother prefers one of my sisters (the one she's afraid of) and is using me because I am reliable and calm (I hide my stress). Her resentment comes out in the words she mutters under her breath if I dare to look bored when she talks about my sister in glowing words. I just want to walk a way and still could but something keeps me here: duty, fear of what will happen to my mother if she is forced to rely on my sisters, guilt for feeling this way. It is an impossible situation. But it helps to know that other people understand what it feels like.
(4)
Report

Promises are often made when things are not bad and we have no real idea of the many things that can manifest themselves as time goes on. I don't believe that in those cases, these promises should be kept. If possible, fine, but you must be realistic and do what is best for you - you still have a life to live - and for the safety of the one who has lived their life and is on the way out. You have to be realistic - nothing stays the same forever and then you have to make the right decisions as to what happens now.
(6)
Report

Thank you. It doesn't help much to know that you are not alone does it? But, I'm there and I hear you.
(6)
Report

Lots of good comments here. I make 2. "Promises" made when we had no clue what we were signing up for are not valid. We're the grownups. We get to renegotiate for everyone's safety.
Second, I was glad to see comment on childhood crap. When I was taking care of my Mother she refused to shower, change her clothes, see a Dr., see her ear Dr., get in the car and go anywhere. I'm sure I'm missing something. And this is with helpers who couldn't get her do any of those things either. Everything became a control issue between her and me, the oldest daughter, whom she had bossed around endlessly to help take care of 7 younger children. It was so long between Dr. appt's that I played a trick- I called an ambulance. No emergency, just as a taxi, to an emergency room at the hospital. As soon as two strapping young men showed up she was trilled to ride in their ambulance. (At the hospital she got every test they had and I got some good info on her health. They sent it all to her Dr.'s office, so it was as good as going to the Dr. Also showing up in an ambulance, at least at that hospital, you go right in, past the waiting room. Caution, you have to pay for the ambulance.) Months later I realized that this wasn't working and I told my sibs that mother needed to go into AL. She wasn't very resistance; maybe she knew it was time. AND, the best part, she loves her new home. She's in her mid-90's now. Here's the best part, having a revolving cast of care givers that she can't distinguish one from another and has no history with, she does mostly what they want. If she won't shower they send in a different team and they get her to shower. While she showers they change out her clothes, voila clean clothes. Just having non-family caregivers makes it all work. So maybe forget that old promise and turn it into a choice- AL or NH. Anything that gets you back to a real, adult, married life and get her the competent, anonymous care she needs. Good luck.
(6)
Report

I can totally relate to your frustration and exhaustion. My parents are both almost 90. My mom is in year 6 of dementia, has a severe malfunctioning aortic valve-that we, as a family decided not to get fixed because it will not change her fast progression of dementia, and would just put more care needs into play. I have struggled with this, but the fact is, except during Covid, I still work. I have a husband & a dog and a first grand baby soon to be born, and I’d like to be able to enjoy her.
My dad has mobility issues &, because my parents still live in their home, he feels like he’s “done” with trying to keep up with my mom’s needs & his own when I’m not there. My mom does not have Alzheimer’s, and is still able to dress herself and do laundry. She doesn’t remember how to put together a meal and, dementia brain sends signals that she is not hungry, so she doesn’t eat a lot. She is starting to forget names for some basic objects, but is happy and walks when weather permits, colors in her books. We have tried to call in home health or hospice, but they require mom to “test” at about 49% with their criteria in order to qualify; otherwise, insurance won’t cover any of the care. Mom still scores 70%. Dad gets mad that he needs to be responsible for giving mom her pills for her heart issues, but he insists on letting mom take them on her own. Of course, she can’t. She can’t remember if she took them so, at times has doubled up. I live 20 minutes away so driving to their house-2ce/day, so almost an hour and a half/day, to make sure mom takes her pills is not an option I’m willing to do. Dad is capable, just not willing; nothing wrong with his mind.
my brother lives about 4 minutes from them and doesn’t do much of anything unless I call and tell him he needs to go help with something. My dad doesn’t call him because, his words, I hate to do that because I know he has a lot on his plate.” I do groceries, clean and take them to doctor’s appointments, and pre-prepare food they can freeze & throw into the microwave.
It is tough, to say the least. I do feel guilt at times for not doing more, but I keep trying to let some things go. Some days are better than others.
I love my support system of friends who have been through similar situations with their parents; so helpful for me.
Many
prayers for you and your family.
(2)
Report

Merediths, I feel for you! I am in a similar situation, although perhaps at an earlier stage. Nights are ok so far but from dawn until dusk I have to be on call, also working from home. Yes, the marriage has suffered and there’s no chance of getting away for a break except putting Mother into respite care, which would be challenging quite apart from the cost. I have been helped hugely by a couple of friends who kindly come in to be here and stand in for a couple of hours during the week - it gives me time to be me for a while. Do you have anyone you could ask?
(2)
Report

Caregiving can last for many years, and it will suck the life out of you. It will impact your income and chances are you will live in poverty come retirement time due to limited income. I do not regret taking care of my mom, which consisted of 15 years; the last six years required full-time 24/7 care. I lost my mom not due to severe end-stage Alzheimer's but insulin-dependent diabetes and subsequent kidney and liver disease diabetes caused (even with a tight control of sugars)--but she lasted to age 90, and even doctors commented I take GOOD care of my mom. So I do not have to live with any kind of guilt because I took really good care of her...she died in peace, no discomfort and not once had she ever had narcotics or psychotropics. I walked her everyday in the park for 5 years and she was bedridden the last 2-1/2 months of her life. She could no longer respond to the environment her Alzheimer's disease ate up her brain and her feeding tube kept her needs met...but I also spared her a death from dehydration so I never regretted doing that and she did great with the feeding tube. It was easy to administer medications and I knew when she was dying when she no longer absorbed the nutrients and water I put in there by checking residuals every day.

It's been 1-1/2 years (just about) since mom died and I am still recovering from this, but gainfully employed and pursuing my Master's degree...so there is life after mom.

Regret it? No way. I adore mom. She was the only thing on this crummy world I ever loved. But caregiving was very very hard and it was very very stressful...I still do not regret it.

I had to feed mom, manage her bowels (I had to induce bowel moments every tues, thursdays and sundays), change her about 6 times a day, and move her from place to place with a Hoyer lift when she lost her mobility. I had to keep her mouth and teeth clean. It was a lot of work. Skin care too. I don't think I could ever do it again though. Mom is in everlasting peace and her ordeal of living is over, which is comforting to me. She also died with perfect skin.
(7)
Report

I can totally relate with your current situation. I too was the primary caregiver for my elderly father and I lived 6 hours away forsaking my home, family and life for 14 months so my dad could die in his own home. He refused to move to my home or even consider assisted living. To make matters worse, he was a toxic narcissist who could not see what pain he was causing me and my husband because he only cared about his own needs and comfort. I finally reached my tolerance for his abuse and found a wonderful caregiver to come into his home to provide care so I could go home for awhile. As he continued to decline I returned to take care of him while he was on hospice which was grueling. He passed 3 weeks ago and for the first time in years my husband and I are free and have our lives back. And he left a real mess with his estate for my brother and I to deal with. I know there is alot of “guilting” out there about “this being the right thing to do” or “ you will be glad you did it” or “ but this is your father”. He did not hesitate to put his mother and father-in-law in a nursing home but that was not acceptable for him. As far as the caregiver having health issues I had developed an ulcer, lack of sleep, poor diet and constant pain in my upper neck and back. It is going to take months to recover. I believe as we face our golden years we need to plan on how we are going to get care and just not assume our children are going to do it.
Also, clean up your home and property and don’t expect to leave a mess for the children to deal with.
(7)
Report

Needs to be said loud and clear: “Children grow up. Each year they gain more self-control, intelligence and independence.” Caring for the elderly has NOTHING in common with that. The only thing the elderly have in common with children is diapers.
(8)
Report

I honestly thought I wrote this myself! So, I know I’m not alone. Everything you wrote is the awful truth, sad as it may be. I pray everyday for my mom’s slow suffering to end. I’m burned out and feel as if I’m stuck in a pit. Isolation is yet another problem to face each day. I know that God’s timing is not close to mine. But still I keep praying the same prayer everyday. This will someday end. And, yes, life will go back to normal for me. Big hug to you. Know that you’re not alone.
(10)
Report

In a word yes, and no consolation to you that you should know you are not alone in this. For me there is give and take as without living under the same roof and caring for my elder parents (one deaf, the other nasty and has dementia and is miserable and uncooperative) I also benefit from housing which I could not otherwise afford on a part time wage. I wouldn't even mind it quite so much if I could have food in the fridge that wasn't touched by filthy hands or consumed by a germy mouth directly from the bottle complicated by a stupid and ignorant elder who refuses to lock the demented one out of the kitchen and alleviate a mass of problems. To prepare food is an ordeal because utensils are hidden (where did it put that....?) and ingredients are hidden or stashed in one of two fridges at this point. I am just eating for the first time today to avoid interacting with my mother who has loitered in the kitchen for well over an hour. checking her stash of folded tissues under her placemat, running water in the sink, eating cookie crumbs directly out of the cookie jar with a spoon she is putting in her mouth(hey it beats sucking the bbq sauce direct from the bottle and eating jam out of the jar with a knife! Another reason to lock her the hell out of the kitchen...and yet I do it. And I know too well the toll as a few months back I nearly literally died as a result of it with a dissected aorta and emergency surgery for it. Yes I am the worst case scenario and here to warn you: caregiving if done correctly, can kill you and the person you're caring for CAN outlive you. Ah yeah, I knew things had to be made better and was planning on getting someone in to at least clean once a month the areas that they mess up (and do not or cannot clean up after themselves). Then throw in the out of state sibling who BLAMES you for not taking care of yourself and having this crisis! OR the people you thought would be in your corner and if nothing else at least offer some mental/emotional support who vaporized. One in fact so ridiculous as to ultimately send a note saying what happened to you? Did you have a heart attack? It's nothing to be embarrassed about! AS IF! IF you do have to do it or want to, just beware, establish guidelines, boundaries if you will, even in your own head. Let people do what they can for themselves. And do take time to take care of you...whether it's cleaning your own space first instead of last, washing your hair, putting fresh sheets on the bed. You matter too! Hugs to all. And god bless us all.
(5)
Report

Hey you don't give up yet! I know that taking care of someone you love 24/7 is dam hard because I take care of husband now. Some days are tougher than others but if possible get someone else to come and let you take a break. I go do errands for a hour and that really helps me a lot. There is help out there you just have to look for it. Contact the county and see if they could assist you with home care for your loved one. Ask others to help like family, kids, siblings too. I will pray for you dear one and I hope you find some relief so you do not burn yourself out.
(4)
Report

I took care of both parents when I was in my late 60's - so I speak from experience - here is my best advice:

1 - don't feel committed to a promise you made without knowing the facts - that's not reasonable
2 - think it out .... what if you break down either physically or mentally then who will be her advocate then when you are no longer around?
3 - hire help [on her dime] & don't feel guilty about it either - if SHE needs more help than you can give, then get that help ASAP - if other family member[s] object that it will reduce her estate [AKA their part] then they either volenteer to help regularly or SHUT THEIR BLOODY MOUTHS UP - every person who questions you gets a volenteer assignment there & then

When I took my mom to long term care, I gave her no notice because she was in hospital & it was a major upgrade having her own room with her own things in it - as she had been having physio & years prior had been in rehab for a broken neck - I let her think it was short term & was for her physio -

Within 2 weeks she was gushing how great the place was, how nice everyone was, how clean everything was - quite frankly she bloomed there with 8+ activities plus religious services [she went to several a week] - she did bingo & winning a small Hallowe'en candy bar would make her day - they had a 'happy hour' with non-alcoholic wine several times a month with a 'treat' appetizer

Can you do this for your mom? - I'm guessing you can't so now is the time to make the hard call because if you do it now YOU can scope out the places & pick which will suit her & you [closer the better] - if you wait until you break then someone else will pick the first place they find

YOU ARE HER BEST ADVOCATE - IF YOU GO DOWN SO DOES SHE - I don't want to scare you but you sound at the end of your rope & time might be shorter than you realize - please take a good hard look at what would happen to her if you were removed from the picture

If you only start with care several times a week for the showering - I bet it exhausts you but they are trained to do it better & more effisiently than you will ever do - supervise the first few so that her special wants are accommodated then use that break time to re-charge your batteries [sleep/shop/hair cut?]

FYI - if she goes into a home, when you visit take something with you to show you care - my mom's favourite was 1/2 decaf coffee & 1/2 hot chocolate with some Timbits [doughnut holes] because this shows you still care - if she is diabetic always tell staff what she actually consumed

I haven't read any other posts but I'm sure we all wish the best for you & your family - the handwriting is on the wall & we have heard your cry for help even if it is not what you want to hear but rather what you NEED TO HEAR
(7)
Report

You hit multiple nails on the head with this post!! I truly truly get it. Everyone has their own caregiving journey, but all in all it's 110% not easy.
Having had a child and many children in our family to even include several with severe special needs, caring for the elderly is not at all like caring for a child. It only gets worse with an elder no matter what we do and we feel frustrated and powerless that we can't make them healthy again. There seems to be little to no small victories anymore. The physical and mental toll it takes on the caregiver can't be measured as we have to deal with watching a slow downward spiral of our loved one, among many things. Then there are the old dynamics which get dug up from our childhoods.
We hear so often "this too shall pass", but when, exactly? 5, 10, 15, etc. years is no small amount of time and you wonder will you have any time left to enjoy your own years? Will you ever be happy again? Will you be healthy when you no longer have to be a caregiver?
In a facility it takes a village of professionals to care for an elder- whereby at home it usually is just one person who handles it all.
My heart goes out to you. Try to take care of yourself as best you can, when you can.
(7)
Report

Rule # 1 in caregiving: there are no rules. There is no script for being a full time care giver. There are just too many variables to make pronouncements. You will need to cut yourself some slack. I am blessed to be in a unique position as caregiver for my wife of nearly 50 years. I have no other responsibilities, we have adequate resources and plenty of assistance from qualified professionals, thanks to hospice and the local Aging and Disability Resource Center.

Check and see if you have a local ADRC where you live; there are all. kind of helps available free of charge or reasonably priced.

Here's what I've learned in four months of 24/7 caregiving:
1) Cut yourself some slack.
2) Be completely honest with your loved one; for us this is a new phase of a healthy marriage...I know that's not true for everyone.
3) You will need a trusted friend or confidant with whom you can be brutally frank. This is of inestimable value in clarifying things that otherwise would just be stuck in your head and get in the way of healthy reponses.
4) If you're a person of faith, enlist the aid of your pastor. Or find one if you don't have one. These situations are an immense spiritual test as well as bodily and emotionally.
5) Know you are not alone. Reach out to your long time friends. - or make new ones.
6) Look for the bright spots and celebrate them when they show up...sometimes hiding in the darkest valleys.
(4)
Report

Mout people don't do it unless they have to or promised to.

You can only do so much do when you get there, you'll just have to have the talk with your lived one and tell them exactly how you feel and what their options are..

If they can't afford 24 7 Care and no one else to help out, then they will have to go to a Senior home.

Prayers
(3)
Report

Merediths: I hear you. I really do. My caregiving had to be done out of state as I had to leave my home, my family, my life, my pets and move in with my late mother, who was demanding to live alone in her own home 7 states from mine. Talking to my parent about options was an epic fail. She said "no, I'm so glad that I stayed in my own home." I required surgery and was already an elder when I had to take on that task.
(2)
Report

After 7 years, it just gets harder. My rule #1, ask for help. The sooner the better. Lots of help. Help to give you a break, not just an hour now and then, 4-5 hours min and at least a whole day or two as often as you can. Most of the time there are people around you that want to help. If you can't ask, make a list of what you want help with --- send it out, email, or however you can and people will pick what they want to do and how often. The more you feel you have to do it all yourself, the harder it is. Have patience for the people helping - they are not you and may not do things as well as you...that's OK. Anything that gives you a break is good. Allow yourself to thrive even though your loved one is not. If you ever want to do more then just survive it and some don't -- ask for help.
(4)
Report

You are exactly right. Caring for a loved one is a horrible job. It's like going through a dark tunnel with no end in site.

It's crazyfying.

The only thing that helps, is being a part of a supportive group. Consider joining the Alzheimer's/Dementia Caregiver's FB Support Group. It's a place where you can vent without judgment.
(6)
Report

I was where you are after a few years of this with no help. Then we were getting some caregivers (I use that term very loosely when an agency decides for you ) through the waiver program. For the last year since the covid, I have been completely alone with his care. No exercise, no friends, no leaving the house because he is at risk if I take him into a store and he cannot be left alone in the car. I have relied on curb pick up by whomever can get there for me, amazon shopping and virtually nothing else. I am at the point of climbing the walls as I was the first few years. You cannot express your feelings freely even to unload a little because for sure then Protective Services would show up and that would not be good for anyone.
(5)
Report

1 2 3 4
This discussion has been closed for comment. Start a New Discussion.
Start a Discussion
Subscribe to
Our Newsletter