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I lost my Mom a few months ago to a horrible cancer and in the end she chose VSED. Under Palliative Care nurses' supervision I administered daily injections of anxiety medications so she could could die at her home. It was horrific. Now, my Dad has been left behind with Dementia and is losing his ability to talk and read. While he is living in a retirement home, I go daily to spend time with him, handle his mail, keep him socializing, supplement his meals (he has lost his appetite and thirst), and take him for outings. When I get home, I just want to flop down like a zombie. Everyone keeps telling me to 'take care of myself'. If I hear that one more time, I am going to scream. I eat healthfully, take supplements and medications, walk, take scented baths, and try to read (the same paragraph 50 times). I don't seem to have any motivation to do anything else but just try to keep existing. Very little brings me joy anymore. Am I being too hard on myself? Suggestions?

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I have often seen long term caregivers become so enmeshed with their parents lives that they give up their own.
I would seek help. For counseling in these situations often a Certified Licensed Social Worker in private practice for counseling is the best choice as they are specially trained in life transitions.
I wish you the best. We often follow the same path like a mill stone pony, pulling our burden in the same endless circles. It is hard to take a new path forward for ourselves because as unsatisfactory as the one we are currently on may be, the new path represents the unknown, hence a lot of anxiety and fear.
You aren't alone and this isn't your fault. It is a natural progression of the path you have been on. I sure do wish you the best going forward, but do consider a professional. We can sympathize, but we aren't trained to help you at all.
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My condolences for your loss. I understand about being joyless and not having any motivation. You are in grief at the loss of your mother and may also have depression.
Make an appointment with your doctor. They can give you a mental health referral. It can help to talk with a therapist and work through your grief and depression with one. Everyone needs someone to talk to and sometimes a therapist is the only person there is who can understand. You might even benefit from some medication even if it's temporary.
The people on this forum are for the most part very understanding, supportive, and want to help because all of us know what it's like to have been a caregiver.
I'm happy you're reaching out here. That's a step in the right direction. Be easy on yourself and take your time. Take some time for yourself.
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I appreciate your reply. I speak with a social worker. She suggests I 'be gentle with myself', that I 'haven't had time to grieve Mom yet', etc. I do have grandchildren and children I see, and a husband I love, but I promised Mom she would be able to die at home and I promised her that I would watch over Dad until the end. I do so lovingly and without anger and my family supports my decisions. I know that this is all temporary, too. I guess knowing I am not the only one going through this helps.
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Well, if you're criticizing yourself for not being more active in self-care, yes you are being too hard on yourself.

You're eating properly, taking exercise, and continuing to maintain your personal hygiene. Believe me, in your circumstances that's impressive.

Do you, could you, keep a dog?
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Gwenivere Jun 2022
I would love to keep a dog. I have to settle for snuggles from my son's pooch or visit the SPCA.
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It sounds like you are depressed and experiencing caregiver burnout, all totally understandable with what you've been through. You are grieving the loss of your mom while trying to care for your dad who is declining as well. It's quite a lot. I get it, I had 2 sick parents at once at one time, caring for them as an only child, and experienced all of these feelings. Now it's just my dad as I also lost my mom several years ago, and I am experiencing a lot of burn out and some anxiety and depression. What has helped me is talking to a therapist and a support group for caregivers. Give yourself some grace that you have been through a lot and are still in the thick of it. But not finding joy in things you used to is a sure sign of depression so I think you could definitely benefit from speaking with a therapist who is skilled in helping people cope with all of these feelings. Just be gentle with yourself and realize this is a process and it takes time to heal, and it's hard to heal and grieve when you're still caregiving another parent, that is what I have discovered.
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With all you have on your plate, I am not surprised you have no motivation to do anything else but what you MUST. And that's go visit dad and leave him feeling drained and too exhausted to do much of anything else. What 'joy' can you really find when you're surrounded by death?

My mother was dying for a good long time, living in Memory Care AL and each time I had to deal with the reality of the situation, I myself felt exhausted and drained. SHE drained me; the very sight of her. The things she said to me, the hostility she displayed toward me. Then I had to go home and handle all of her finances, and her bills, and all the calls from the MC, and the doctors, and hospice AND AND AND. And before that, I had dad to deal with too, as an only child. And going thru his care and management, along with mom, and then his subsequent death and all those arrangements. I lost myself in all of that, for years.

Between the time dad died and mom died, I did take vacations with my husband, I worked, I found joy again, until mom started the long goodbye. Then I declined along with her, frankly, waiting for the inevitable to happen. I call it hunkering down & going into Survival Mode. Doing what WE have to do to stay alive and on track, so we can take care of THEM but also keep ourselves on track ENOUGH so we can do it day in and day out, if that makes sense. I've been the Queen of Survival Mode for 6+ decades already. As an only child and survivor of many different traumas, I've learned how to do Survival Mode. I tend to be hard on myself at times, but doing so serves a purpose: it keeps me IN Survival Mode.

You'll have joy again when the time is right. Precisely BECAUSE you are 'taking care of yourself' properly right now, during the dog days of caregiving, and not expecting TOO MUCH of yourself in the process. You can't expect yourself to also have a huge amount of 'motivation' as well, that's my take on it. You just have to survive this period of time and get dad through this end of life journey he's on, and come out of it intact YOURSELF, and then your motivation will start creeping back in. That's what I have found after both of my parents passed; mom this past February, dad in 2015.

Go easy on yourself and keep doing what you're doing. I wish you good luck & Godspeed during this difficult time.
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Gwenivere Jun 2022
Exactly. You have incredible insight into this, but after all this time, it is knowledge hard-earned. Thank you for sharing it. You have pointed some things out to me that I didn't think of before.

I don't liken this to depression (as others mention), which I have experienced years before. I don't feel completely hopeless. I still like to get out of bed in the morning. This is different. It is a mix of grief and fatigue and helplessness for I cannot change, speed up or slow down this situation. I can only live as best I can to get through it.

The fact that one parent's demise is happening directly after another is very tough. I don't want Dad to suffer, but I don't like the thought of losing another parent so soon, either.

Thanks again.
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I was in a similar situation. My mother has needed care for over 10 years and my Dad was always her primary caregiver. He died unexpectedly leaving my mother in a care home. I tried in the beginning to visit almost daily but the stress was just too much. I have a full-time job and two teenage kids. I got to the point where I hated every single aspect of my life. I started taking it out on my kids, lost my job and had no energy to do anything.

I eventually realized that I couldn't continue to visit so frequently do now only go once a week. I have a new job, happier kids and husband and energy to get my life back on track. I still handle all of my mom's bills, medical issues and any other personal issues.

All the self-care in the world wouldn't have changed the situation as I am not superwoman. The only thing that could change it was realizing I could only do so much in a day and had to claim some time back for myself and family.

My mother has now been in care for 2 years and I am happy I took a step back. She is well cared for and I am able to have a life filled with joy. It was hard as I felt guilt but I had to prioritize my own mental health as well as that of my own families. I wasn't prepared to give up my life as I still love my mother, I just know my limitations.
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Metime Jun 2022
Thanks for that, good advice I will take on board.
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I am with you 100%! Yes, you are a bit hard on yourself but very understandable. I try to recognize little things I do as caring for myself that others do not acknowledge. I would consider the ability to flop down like a zombie would be huge for me because I care for my husband 24/7. While I can't do that or all the things others would count as caring for myself I have found things that help clear my head. The time I spend on the computer... some solitaire, some financial, some creating organization lists, etc. as doing it for myself. I pull weeds from the flower bed while he sits in a chair, etc. It sounds to me you are already doing a lot of the little things you can consider caring for yourself, it is just others do not count them as valuable as you do. They want us to spend money and time that we do not have before they count it as doing some thing for ourselves! I have been given gift certificates for massages, restaurants, etc. Those would be great if they came with an offer to sit with my husband so I could actually enjoy them without the expense of a sitter. I find that when others suggest I care for myself or make comments that they could never handle all that I do... it moves me toward a pity party where I get caught up in agreeing with them. I am trying to accept my life because it may change at any moment where I do not have my husband. No, I'm not a Pollyanna or cockeyed optimist... I am just trying to be a survivor by trying to see some good within all the hardship I have. Some days it is harder than others and I totally agree the well intended comments of others rarely help. I would love a quick loving comeback to ask them to stop because I know that no matter how much I do for myself others will rarely even be aware.
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Hello Gwen! I am in this same situation with my DH. It's too bad we can't all come up with a one-liner answer to those folks who just don't understand. I haven't got one of those, but I will confess to doing a little screaming of my own! We have a little barn with a lot of stuff in it! I am currently trying to clear the stuff out, I have maybe a half hour a day to stand there and look at it all! It's a great place to just scream my bloody head off! I also have a little hand exerciser ball that I throw at the wall when I just cannot stand it one more second. If I hear the phrase "be kind to yourself" or the worst for me " be gentle and take a deep breath" I head to the bean bag wall or out to the barn. Being gentle sometimes does not cut it. I have a good and caring friend who brought me a pool noodle and said " I'll sit here while he sleeps, go try it out on the back fence!" I whaled the daylights out of that fence and still do that! Sometimes it is a good and Godly thing to just rail against what is killing you. I find that after these "fits" I feel a WHOLE lot better, exhausted maybe, but the anger is spent and gone! The anger space gets filled with more patience so I can again face the stinky bathroom, the paperwork, the idiocy of those who won't, or can't understand, and my darling man who is hidden deep in that body somewhere that I can't reach.

Good answers all here and always caring people. I am somewhat new here and don't always agree with going quietly into that good night! Best to you, love when you can and let the tiger loose once in a while! Hugs to you, Little Warrior!
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Isthisrealyreal Jun 2022
Such good advice.

I had a therapist tell me decades ago, "Get a nerf bat and beat all that frustration into a pillow, wall, whatever and go to a thrift store, buy cheap dishes and find a safe place to throw them and smash them to dust." OMG, it was the best advise ever. It really does help release the internal feelings that can't be dumped on anyone and are so detrimental to hold in.

I still have my well used and much loved nerf bat.

I will also take it out on meat, want some carne asada tacos, a cleaver is so satisfying, want some wiener schnitzels, that meat tenderizer helps too.

Just thinking about it relieves stress:-)
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I’m in a very similar situation with my mom. I joined a support group but everyone there wants me to read about dementia and watch videos. When I have time to read or watch videos, that’s the last thing I want to think about.
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Gwen,

You have not even had time to grieve for your mom and now heres dad falling apart. I hear and know you are trying your best to care for your physical body.
This is emotional trauma that is just plain exhausting. Your mom's passing could bring on ptsd for you.

For me sleep was healing and of course rivers of tears. I suspect some depression too.

I have been through a similar time losing my dad, mom has dementia and declining, aunt with higher stage of dementia. My jewel of a puppy passed suddenly. Well it finally caught up with me and I had a stroke! I had heart surgery also so I am now forced to rest and recover. I am much more aware of my emotional and spiritual self. Sometimes just quiet and stillness is the answer. My green time outside daily has become a welcome routine.

Find what brings you peace and feel loved. What is joyful for you? Maybe just snuggling with a pet or sitting outside listening to the birds. I wish you peace and love. You have been and are a warrior woman. God bless you.
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Find a boyfriend or go on a solo trip somewhere . Focus on your future and start setting goals .
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Yes, you are too hard on yourself! You sound like you are doing everything you can. Yet, you are unhappy.

I won’t say “take care of yourself”, mostly because I don’t want you to scream!

However, I will suggest a support group for either grief or caregiver or both! Preferably in person, but online or phone would work. Even though you are doing some self care, human connection with others who have the same issues will do a lot for you. You can sympathize and empathize with others and you’ll be amazed how much that will do for your soul. You may even make some friends, which of course leads to outings, phone calls, adventures etc.

Also, you could ask your Dr for anti depression med. That too may help. I hate meds and I hate recommending that, yet, sometimes, it’s what’s called for.

I think all that you’ve done and are still doing has drained you entirely. People will fill that void for you.

Good luck and keep us posted when you did what’s working for you!
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m22mathias Jun 2022
I think this great advice, human connection with others in the same situation. With those that have succeeded.
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I could have written your post almost word-for-word. I also have very little joy in my life.

I watched my twin brother pass away in the hospital from cirrhosis in 2019 and it was heart wrenching - all the while my mother was demanding that I "come home" (she has lived with me for almost 5 years), and I still had a job at the time. I feel like I failed him. Anyway, here I am my mother's 24/7 caregiver, trying to just grind through the day, sleep deprived most of the time, tending to my mother's every need, demand and request.

Yesterday for example, we spent literally hours in the bathroom because she couldn't expel a BM and I finally had to give her an enema last night which did fix the problem but goodness, what a way to spend the day. I had a good cry last night before bed and today I carry on.

Most days I do nothing much but just wait around for her to holler my name because I have no energy or enthusiasm for anything. And why even begin because I'll just have to drop everything when she calls me or when she's up because she needs constant supervision and escorting.

It used to bother me to see my "friends" and "acquaintances" posting all of their vacations, nights out, lunch with friends, job accomplishments, etc., but now I have reached the point where I no longer care. I just feel nothing at all.

I agree totally about all of the "take care of yourself" suggestions. When I've got ONE person caring for TWO people (both me and my mother) 24/7, then someone is going to get the brown end of the stick.

Yep, I think you're being too hard on yourself.
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LoveLea Jun 2022
Your life sounds like my life. Feels like Groundhog Day every single day. I feel as if the entire world has moved on, while I’m just going no where. The pandemic only made it worse. But I escape by taking time to daydream about “someday”. I dream about vacations and sleeping endless hours anytime I want. My daydreaming makes me smile and happy, ready to face another day. It’s not much, but one day this season will end and life will once again begin for me. Hang in there.
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Short but powerful answer:

therapy.

These negative feelings are common- see everyone who relates?- but NOT ok.

Get help, either in person or online. I started online therapy in December 2021 and I feel renewed. Yes, mild meds were part of the solution too.

”Caregiver’s burden” - its recognized in the medical community. And there are therapies available to help alleviate it.

Go for it.
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Bliving Jul 2022
How did you discover online therapy. I’ve looked for it but worry that it might be a scam. They ask too many personal questions on their online forms and I have no idea who will access that information.
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I am a caregiver to my wife what started out as just doing a few more things has turned into a full time job with no rest. I have put my life and my business on hold. I do not have any free time. Even getting help is a struggle. Everyone wants the money but not do want to do the work.
these were to be my retirement years full of fun and adventure I never had kids and never did I think I would be changing diapers and a full time caregiver I just want a vacation
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CaroB123 Jun 2022
I'm totally with you. I care for my 89 year old husband full time with no help. Wears a person out. So this is what retirement feels like. Ha!
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You are definitely experiencing burnout and maybe a bit of depression. Start by getting a thorough physical examination from your primary care doctor - to rule out treatable medical conditions. If that checks out fine, ask for a referral to a competent psychiatrist. You may need a little medication and counselling sessions as you adjust to your new life. I would also suggest joining a grief recovery group like GriefShare to allow yourself time and a place to mourn the loss of your mother.
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My husband is moving to Enhanced Assisted Living on July 5. A few days later, I am flying to Seattle for my best friend's son's wedding. When I return home, my plan is to visit my husband two random times a week. I don't want to set expectations so high that he takes our relationship for granted. We are paying his facility a great deal of money to provide care for my husband. I will not do things for my husband for things we are paying the facility caregivers to do. At great financial sacrifice, we are paying the facility to help me be my husband's cheerful and supportive wife--not to continue being his caregiver.
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CaroB123 Jun 2022
Hooray for you. I think you are doing the best thing for him and for you.
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Actually I think what you are doing to help your father is wonderful! He needs you now and you need to be there with him. Your mother will be smiling down on you from Heaven to know the good person that you are.

I know this something people always say too, but it is true. In time you will recover from this grief that you are feeling. I felt it too both physically and mentally when I lost my father and then years later lost my mother. But eventually you find ways to make your life more meaningful again and the pain will never completely disappear, but you can be happy you were there for them when they needed you.
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CaroB123 Jun 2022
I think you are off base. This lady needs to give herself some separation. Too much is too much. She needs a break. I am the full-time 24/7 caregiver to an 89 year old amputee who is legally blind and profoundly deaf. Trust me, although his care is of the utmost importance, I would love to have a day off or even several hours off. The lady has her father in a care home and should take advantage of some personal time to grieve her loss as well as compose herself for future loss.
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Sounds like Dad is ready for memory care, right?

Have you ever considered going on a retreat? Chopra has some awesome programs in Arizona and California. I just saw The Ranch Malibu and that looks awesome too!

When you realize you're going the wrong way, hang a u-turn!
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You're burned out and you probably haven't grieved your mother's death.

Here's a shocker!
You don't need to spend time with your dad daily. sometimes parents do better when the children aren't involved daily. The child reminds them of what they lost, and almost prevents them from forming their own relationships and finding out what the facility offers. Mine does SO much better when I only visit a few days a week. You're too much of a crutch at this point. You don't need to be there daily. He's make do.

Tell Dad you're going to take a vacation for a few days. Tell the staff to look out for him, then go hit the beach or some other place where you can just relax, enjoy what you like to do, and start thinking about your life going forward.

You are too co-dependent with your dad. It's great to be helpful to your parents, but not if it costs you your own life. You should also see a therapist and learn how to break your co-dependency. That's why you feel no motivation or joy. You're not living your life.

Good luck.
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I am in the same boat.. I'm so sick of taking care of my Father. And I feel so guilty about it. He is 98 I am 53 between him and my mother I have been doing this for 14 years.. I live with him full time and I'm ready to cry. So tired and so annoyed.
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What brings you even little joy? Add a little more.
Know you are not alone, You are emotionally drained and at the moment there is not much you can do and that is OK.
But a little bit of detachment after Mom‘s and now Dad care, if he is being cared for in NH , then limit your visit at least for some time.
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You need to connect with people. Doesn't matter how. Phone, email text face to face better.
I think medical Marijuana these days is looking better & better. They have edibles too Lol. I'm not a smoker. I'd also cut back on when you visit. Maybe shorten it or take an day off. Esp if you feel burnt out. When you feel better, visit longer.
They say people who are stressed tend to isolate which makes it worse.
Maybe you need something to get you out of your ru-t, and do something different. Check out a part of town you haven't seen before. Drive to a lake and take a walk. Something diff just to make you feel alive for a change. Something that makes you get out of your head and stop thinking in the future or making lists in your hesd. So you live in thehead.
Try a farmers market, to get your food that week. Or have a box of food sent to your home trying vegan recipes. Things you don't normally cook. I look up things on YouTube to try. I just tried a radish, butter and salt snack. It was meh, but I tried it. Also make sure your getting your vitamin d. That can make you feel run down. Put out a hummingbird feeder. I sit outside and watch them. Plant some flowers. Go try a wine you never tried before. Use your best china to eat on. Your best stemware.
Set a table outside and eat all fresco. We're spending to much time in the house.
If you haven't reconnected with a friend do so now. Help a neighbor.
You have to force yourself. It's the only way. Good luck.
Get off the TV, and radio. Put on some of your fav music. Something to shake yourself out of the same old same old.
If you feel guilty pay someone to visit him while you take a day off. And he sees someone out of the ordinary.
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BettyCrocker Jun 2022
Yes to edibles!

I used Yummy Gummies in the evening before bedtime. Definitely helped me sleep through the night during the anxious times.

During the calmer times I don’t seem to need them. But, when everything is over-the-top stressful, then yes.

Hopefully they are legal in your state and/or you can get a medical prescription for them. I used the Indica which is for sleep.

Im so sorry you have so much in your plate. Losing motivation totally makes sense and is natural.

I also did as someone else suggested and had a once/week appt with a counselor who specialized in family dynamics. Again, once things settled down, we stopped the sessions. I really looked forward to our talks each week.
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Therapy. Time to talk things over and sort out what is going on in your life, to gain some perspective, respect and control. If the first therapist does not work out-try another. They don't mind and it's part of the job.
Taper off the daily visits. He is being cared for now, no need to be there every 24 hours. If you are concerned about his health, schedule a doctor's visit, does the retirement home offer transportation to do so? Take advantage of it, and meet your father at the doctor's office. With whom it would be a good idea to share your concerns before the visit.
You are too tired, overwhelmed to even get close to motivation, so don't. Just take your time, do one extra thing a day, nothing major, that pleases you. For me, it's getting (slowly) back into the garden.
Joy is relative-again, for myself it's the little things that count. Saw a monarch butterfly yesterday and that was a good feeling.
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God bless you! You have been dealt a double whammy! Taking care of your mom and now your dad is a heavy responsibility that I know you did and continue to do because you love your parents, but it is still a huge weight on your shoulders. You have every right to grieve, have self pity, sleep, and anything else you feel or don’t feel like doing. The hardest part is not staying there forever and knowing and deciding when to move on, not forgetting your loved
ones, but moving on from it all emotionally, mentally, for you sake and for the potential of a beautiful future that lies before you.
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Gwenivere: Imho, you may be suffering from compassion fatigue. Perhaps you can seek respite, even for a short while, going forward. Also, you may benefit from seeing a therapist.
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You have caregiver burnout and are still suffering from grief over your mother and father (yes, dementia is called the "long goodbye" and there will be times that you will grieve over your father's condition). Is your father in a place that can take care of him if his health and mental state continue to decline? If not, try to get the energy to look into a place for the next stage of his care. Can you take some breaks? Maybe take off a couple of days each week? You need some breaks and time for yourself. It's OK to loll around in bed for a day and veg out watching soap operas or old movies. Some people take beach holidays where they lie around a pool or on the beach, give yourself permission to do something like this if it will make you happy. Hopefully you have POA for your father's affairs (medical and financial). Set up your fathers affairs so that his bills and financial statements are sent directly to your address, or set them up online as paperless. It will be easier to pay bills, etc. this way. It's better for people with dementia not to have a lot of mail in their home, and you should clear his room of any valuables. Ask to be removed from catalog lists and junk mail lists. Speak with his caseworker at your father's retirement home about taking days off, and later, a vacation, and what care he'll get while you're not there. They should have staff to do what you do. While you are away, give them your cell phone number and ask them to call only if there is a change or problem. All the best to you and your father.
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Cut your self some slack … There is only so much we can do …Take care of your self .
1. Antidepressant
2. Join a Caretakers meeting or two .. ( on line or in person)
3. Talk to a therapist..
Alzheimers association might be able to help with the therapy and they have a wonderful 24/7 help line .
Acknowledge that you are only human and let go for a while and let God. Ask for help from agencies that are set up just for that purpose .. prayers are with you ..
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You could be me! Except it was my father, then my mother (who I eventually palmed off on my sister) and now it’s my husband who is developing dementia. I’m searching for a home care giver but don’t know if that will be successful. What he needs is a wife who isn’t worn out and loves taking care of people. NOT ME! It came to a crisis a few weeks ago because I ran out of my prescription for Paxil. I’ve been taking that for thirty years and get angry and have constant panic attacks without it. (Do you know how impossible it is to get timely do or appointments?). Finally I checked my pharmacy to see how long it had been since the last refill and saw that it was prescribed two months ago but never placed through insurance. The only reason I mention this is that I’m not especially depressed but anxious, angry, and sometimes think life is just too hard to keep living. And I have no energy. And certainly no joy. I hold out hope that the Paxil will kick in soon and get me back to normal. There might be a medication that can help you until your burdens are eased. Meanwhile, no, you are not being too hard on yourself. Do what you can and just forget everything else!
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