So my father in law was diagnosed with Alzheimer’s and a month later my mother in law passed away, leaving me as his nearly sole caregiver. I am told how much I am appreciated however is it wrong to think that I should occasionally be pampered?
I know I am not alone in this situation that there are many people who do this same thing. But this is my 24/7. I watch him on cameras when I am not here (we have cameras in every room) this ensures he can live alone except as he heals for the past 8 weeks I have lived with him. I get him up in the morning do his personal hygiene clean and change foley bags and site change pull ups clean up after accidents shower him do his meds take him to dr appointments take him on outings do his house chores cook his meals literally everything. And of course I am the one he takes his anger out on. I get that. His daughter comes out sometimes once a month but has had about 6 months between visits no kids at home and divorced and lives 30 miles away. Yep tons of help there. Didn’t even make it out for Christmas. His siblings tell me how grateful they are for all I do. As does my husband and my kids. But is it really unreasonable to think that maybe someone would show me? I don’t want to sound needy or unreasonable but sometimes I feel a bit used and I don’t like that feeling. And since living in for the past 8 weeks I am really beginning to have some emotional issues now what? Maybe just saying it will help. Don’t feel real comfortable saying it out loud hear. No pity party really needed I don’t think it helps anything. Thanks for listening
Long term care of a dementia patient by one untrained, older caregiver is unsustainable.
It woukdn't be "complaining" to ask "what's the plan for dad, going forward?".
Just ask. And make sure they know that YOU aren't the plan.
Quit being used. As of March 1 or whenever that eight weeks is, is when you go back to being like the siblings and possibly your Mister. If it's so important to them, then they can uproot their jobs and their lives to take care of him, which they won't. Otherwise he goes into a home.
I say sabbatical (leave of absence, etc) so that it may take out some of the "sting" of actually quitting. During your long sabbatical (I'm talking a year) they will have figured out his care and then you can formally quit (but do not step back in to rescue them at any time or you'll be right back to where you are now: impending burnout). Plus that would make you an Enabler.
From what you've posted it seems you are a people-pleaser, appeaser, a I-won't-rock-the-boat person, a I'll-do-anything-so-they-like-me person: aka a doormat. Only you can stop others from treating you like a doormat. Even your husband apparently likes the doormat you. As long as you're the only (and very convenient and docile) solution they won't bother finding any other.
The way to gain their true respect and appreciation is to stand up strongly for yourself. What are you afraid to lose? Right now you have very little. Absence will make their hearts grow fonder. Maybe they'll be upset when you first tell them about your leave of absence, but who cares? If you stay and enter full burnout mode *no one* will be there to rescue YOU. YOU must rescue (and defend) YOU. I wish you much clarity, courage, wisdom and peace in your heart as you move onward and upward.
And if no one does, you still go away and let the remaining family figure out his care, as you deserve time just for yourself, because being a full-time caregiver is the hardest job there is.
And don't worry, someone will step up eventually, and then when you get back you make sure that the family gets a plan in place for his care, using his money. And if money is an issue then he can apply for Medicaid.
You are on a very slippery slope and if you're not careful you will slide right off the edge to a not very pretty place, so please take care of yourself. You do matter!
A Dementia patient should never live alone after a certain point. Its time to place your FIL. Take the burden off of you.
I think we had a little 'family meeting' just DH and his sister and her hubby and me. When my sweet SIL started to cry b/c she felt so stressed--then it became real to me. (I was, at the same time, helping to care for my dad who had Parkinson's).
DH offered MY help, which made me a little angry, as it was not his place to do so...nevertheless I did step into daily CG so SIL could have a break. It lasted for about 8 months and he passed. He shouldn't have been living alone, but DH made the decision I would go out to his place 3xs a day to care for him.
Unless you ASK, you won't know what kind of care you can expect. And, your DH should be doing his part. Don't let him slide with that 'well, I don't know what to do' line.
You want a vacation? a LOA? to give up the job entirely? to share the job with someone else in the family,? to hire some extra help? or full time help? to get him placement in a facility?
Sounds like he could use the latter, but in that case, you need a doctor to recommend it. The family is satisfied with things as they are. They won't change anything unless you tell them they need to! And they do NEED to.
Do some research about what is available. Give them some ideas to work with. They don't know and won't give it a thought unless you press them. Try to do it without anger, but with determination. Give them some specific ideas and ask for their thoughts. Emphasize, repeatedly if you must, that change is needed.
The family should still be grateful dad is getting excellent care. If the family can’t afford it keep track of debt and get paid from the inheritance (put a lien on it if necessary).
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But you know all that.
Mmm. "Once more with feeling" methinks.
They can show a real appreciation of the workload you have borne and continue to bear by:
- buying respite hours - so many hours per week of paid professional help during which FIL is off your hands
- buying respite stays - a week or two every three months or so, when FIL stays in a facility that offers this service specifically (which means they'll be good at it and won't mess him up) and you get away for a proper rest
- a schedule of visits and practical help that they can work out amongst themselves - good for FIL's socialisation, good for their understanding of where he's at in his journey, and good for letting you feel less isolated.
And even, if this appeals to you, plain money. They do say after all that this is the sincerest form of flattery.
Create a plan for care for yourself, what do you need, and how does that work with the care you are providing. Always, you come first, both mental and physical well being. If you are sick, then there is no care, everyone in the family needs to be aware of this. I was in this position last year, at one point I stopped functioning, I could no longer help anyone, because I was so stressed. The first step in this journey is to figure out what you need, then communicate and execute and what you cannot handle must be moved. Talk to professionals in this space about care for people at home.
Talk to the family and where there are tasks that you need to hand off, how will it be done, you can ask for support from the family, or you can get support from professionals. There are a lot more services for aging at home than previously, but you have to do quite a bit of research to find them. Tackle whatever tasks you can to make his life comfortable and keep your sanity. I do not care for my mother hygiene or medications, I have set my boundaries there, the medications make me nervous, and I do not have the patience for the hygine activities, so our PSW takes care of this. I take her to appointments when it is convenient , check if my kids can do it and last resort is PSW/agency to drive her when I am not available. I have organized a service for meals, we plan the week meals together, then we order them and they are prepared and delivered. Everyone is happy, she gets a say in what she eats, it is healthy, meets her nutrition goals. We spend 1 hour a week doing this instead of 1 hour a day shopping and cooking. When done well, this costs the same or less.
Remember that his anger is not against you personally, this is going to be most difficult, you just have to brush it off. You cannot control this, and anything you cannot control you must learn to ignore.
You will need to be firm with the family and stick to the consequences, if you say you cannot do what you are doing now, then you must follow through with your actions, hire someone and they pay, or ask for state support if they will not step up.
And the better you do the job, the harder it gets as caregiver to extricate yourself from the day-to-day grind and establish the fact that the process that look so reasonable and easy to them is dragging you into exhaustion and despair and then even deeper and deeper.
Since it clearly IS NOT with you, WHERE does “the buck stop” in this man’s care?
Who is ultimately responsible for the planning and management of his life ongoing?
WHY ON EARTH do you feel uncomfortable taking steps to take care of YOURSELF in this unbalanced family dynamic? When do YOU sleep? When do YOU have free, unstructured time to “restore and refresh” YOUR LIFE?
Has anyone in the “care constellation” (besides YOU) considered that dementia is a CONTINUUM that ceaselessly deteriorates?
Are you considering the fact that there is no one who actually CAN initiate the conversation for increased support FOR HIM, BESIDES YOU?
If you’re waiting for family to “fire” you if you force your self to be “uncomfortable” and TELL THEM HOW YOU REALLY FEEL, I think you can feel perfectly safe that that’s NOT going to happen.
So now YOU are the live-in slave caregiver for your FIL for 8 months now? He takes out his anger on you?
How did you fall into this caregiving trap? How old are you? How old is your FIL? Did you have a job before you became the caregiver slave?
What is your FIL's financial situation? Who has POA? HCPOA? How many siblings does your H have? Why were you the chosen one? (I hope you won't say that you volunteered, but did you????)
Is this being done to preserve the inheritance?
Do you see how much of a doormat you are?
My mum needed a team of people to look after her,change her, move her in bed so she didn’t get bed sores, give her morphine at the end. So many people undertake the job of carer without realizing what they are taking on. I tried and failed to keep my mum at home, it’s too much.
You need to ask for assistance, is anyone of the siblings at least paying you. It cost £5k per month to look after mum.
You are right and it does sound like the FIL needs nursing home care. The poster is only eight weeks in. They shoudl start searching out placement for him now.
My MIL recently came to live with us. So far she can do some things on her own (like bathroom, but I help with her showers). My husband (her son) helps too, plus he works from home most of the time although he does travel for work so I help her more on those days. His sisters are also worthless. One lives in the same town and another in the same state. They do nothing to help, but call her on the phone. However, we have an understanding that if it changes and she needs more help than we can give, he would look for an alternative.
I will personally thank you for what you've done. Your an angel. FIL needs to be in MC or NH.
Let his daughter and family figure it out..... then you will be appreciated once they start taking turns giving you a break, they will for sure appreciate you then because they will all have had a turn and are participating.
You should never feel the way you do..... his family needs to help take turns- no excuses you tell them you can't do it full time anymore.
Believe me they will figure it out if you give them no choice!
I could understand better if he didn't have family members, but you should not have to do it alone.
There are also respite places that can step in and give everyone in the family a break as well that is what they are for.
Give them your notice that everyone is going to take turns and drag out the calendar and start asking who wants what week.....
You should not feel any guilt over this either..... families can take advantage of the situation if they know they don't have to help.
My saying is , "Don't let anyone steal your joy".
You deserve breaks so sign them up and take them..... Blessings.
There's a saying.
Don't tell me. Show me.
Anyone can be generous with praise and accolades then walk away.
How about if the family members all reach into their pockets and make the caregiving worth the poster's while?
Or the family can insist that the poster have week-ends off and they can offer to take the FIL to one of their houses to stay from Friday to Sunday.
Maybe they could help with housekeeping, errands, and taking the FIL to doctor's appointments?
These are the ways all caregivers consider actual helping out. Yet, these ways that I've named are extremely rare in any family caregiver's life.
The praise and accolades the caregiver gets means nothing and amounts to nothing. It doesn't last long either. The praise and accolades soon turn into friendly "advice" and that soon turns to harsh criticism.
You are not being unreasonable or acting needy and you are most certainly are being used. Believe me, the longer you stay as Alzheimer's FIL caregiver the being used feelings will increase by a thousand as the care needs increase with more responsibilities and demands from the family get heaped upon you. Just wait until they start offering advice on how you could be better doing your "job". That's next.
Don't count on a moment of help from the family. You have been made the Designated Caregiver and they know it. You are the care plan and will remain so indefinitely if you allow it to continue. The family will be very careful to make themselves unavailable. They don't want to get caught in the caregiving net and have to help out and trust me they won't get caught in it. You're the one caught in it.
It's only been eight weeks, so call a family meeting. Let everyone know that you will not be FIL's caregiver and another arrangement will have to be made. You will also have to move out of the residence. If you're there, you're the caregiver. So pack up and go.
Please don't let yourself become enslaved for years at a time like so many of us here.
please listen to burnt.
"The family will be very careful to make themselves unavailable."
"They don't want to get caught in the caregiving net and have to help out and trust me they won't get caught in it. You're the one caught in it."
"Please don't let yourself become enslaved for years at a time like so many of us here."
Keep a record of your emails/letters and theirs.
And in your next written communication mention all the work you do and how you greatly appreciate their words of appreciation, but that you can't any longer. You don't have to say why. If they ask tell them that you're getting ill doing what it takes a staff of people on a rotating schedule to do everything your doing and it's too much for you as they can imagine. Continue to say that in a (generous) 2 weeks they've got to figure something out.
You can't give them more time because then it seems as though you're not at the end of your rope. I found someone to help in two days when I had my rotator cuff surgery,
You'll also included in your written email or letter that to be helpful you're including a list of local Home aid as well as move-in assisted living homes. Include places near their neighborhood.
Contact a social worker at your hospital and ask them for referrals.
Or take a photo of yourself today, and every year on the same day, keep doing what you're doing, and watch the troll you'll become, and enjoy being a volunteer martyr. I'm telling you, there genuinely are people who for some deep needed reason absolutely get emotional satisfaction in being the savior. It is a real need.
My goodness…Sometimes I feel a bit used. Are you kidding me? You're waking up and getting healthy.
Remember you asked for no pity party.
I would suggest that you get psychological help of a therapist now so that you can advocate finally for yourself and your own life. There really are only two choices, reclaim your life or continue in this sacrificial management of the care of another. You know that you will not be changing others nor their own lives and plans after 8 years experience.
After some therapy sessions you will know clearly in your own mind where you stand and what your choices are. Whether you chose then to continue in this care or in what limited manner you choose to continue, or whether you wish to step away from this care, direct or indirect will be more clear in your own mind.
Often the New Year is a time when we reassess where we are in our own lives, where we hope to be in future, and what we must do to change our lives. Change, to be frank, takes all the courage we have. It's hard to move out of habitual ways of "being" because even if they are awful, they are "known" and in that sense comfortable. The unknown is terrifying. People will be hurt and confused when you tell them you cannot go on. We tell people who we are by what we do, and they come to "expect it" of us, and become angry and terrified themselves when we tell them we can't go on. They lash out in any way, adding to all the trauma. It's hard. I wish you the best of luck. If you stay on as a direct caregiver it may be unlikely that position will change.
Contact his kids and let them know you did all you could as a live-in and have reached your saturation point. Leave emotions out of it and straight up let them know you cannot continue to meet all these needs and it's necessary to hire in-home care. Let them know you will take on the role of hiring someone (if you are willing) and you will let them know the costs. You can also assign time slots where they can monitor their father from their cell phones.
Any caretaker on this site will surely confirm that the more responsibilities you assume, the more you will end up expected to do. No one who has not physically done these things can truly know the time, effort, and emotional strain it takes-so do not expect the pampering you crave to come from these people. Instead, learn to LET GO and put the responsibility where it should be - off your shoulders and onto his kids. I know you are a caring person, and you should continue to be as much as you WANT to, but being a full time caretaker is not what role you should be assuming here.