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I've been taking care of my husband since December/2019. I know I need a break, but I can't help but feel guilty. Did I do the right thing? It was unsettling to just drop him off at the front entrance and not even able to accomodate him to his room because of COVID restrictions. I got highly emotional and broke down in the parking lot. He will be there for 5 nights without any visitations whatsoever from family or friends.
I realize that I know I'm not the only one who has gone through this.

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I’m so sorry that he did not receive the best care. You did the right thing by reporting it.

It’s sad that facilitates are shorthanded. When my mom was in rehab after a fall there were issues. Some issues are caused by not having enough employees. They work double shifts all the time! They work very hard. It’s a tough job!

I did the same as you. I reported it. First I called the pharmacy that we use because it involved meds.

The nurse over medicated mom. She didn’t want to go back to mom’s room later so she decided to give mom a double dose of her Parkinson’s meds.

So when I called the pharmacy and spoke to the pharmacist she was the one who told me that I had an obligation to report it because she said that she was most likely doing it to other residents too.

I asked if a double dose would hurt mom. She said, “Probably not if it only happened once but it would be a problem on a continuing basis.”

My mom is sharp! No dementia, so immediately mom told the nurse that she only took one pill. The nurse’s response floored me! She told mom, “It won’t hurt you and I don’t want to make another trip back later.” Mom is of that era that nurses and doctors know best so she took it but was uncomfortable doing so and told me about it as soon as I went to see her the next day.

It is true that we have to check up on family members in a nursing home. I went just about everyday. I did not report minor things but things like meds are important. You bet I reported it!

As a respite situation you can’t be there and you were only gone for five days. Mom was there a longer period of time for rehab.

I was pleased in how the director of nursing and the social worker handled mom’s issues with the staff. Mom did not have the issue occur again. The nurse did admit it. She was written up. I did not want her to lose her job.

Yes, laundry get screwed up. I did my mom’s laundry because she is particular about her clothes and didn’t want them to get lost.

Even with signs that I was doing her laundry they took her clothes to launder and lost some of them. I went to the wash area myself and found the blouses.

They shared a bathroom with other residents and the aide told her to use the same cup to rinse her mouth with after brushing her teeth. Yuck! That is just gross. I brought mom a stack of cups.

The meds issue is what I was very displeased with because that was potentially dangerous.

The end of life facility that my brother was in for hospice was completely different. They were wonderful in every aspect. We were there everyday. That makes a huge difference!

I don’t think people should feel guilty if they don’t wish to be there daily though. Some people can’t do it.

Are facilities perfect? No. Are some very bad? Yes. One that my dad was in for rehab was actually shut down by the state! They were horrible. I hated that place.

The place my godmother was in was pretty bad too. Lots of theft. She had Alzheimers plus macular degeneration and went blind. She would be dressed in rags that were too large for her because her beautiful clothes which were labeled with her name were stolen. She was covered in bruises because she was blind with dementia and was scared and would fight them. They would fight her back. So sad.

We don’t have high ratings here in Louisiana for homes. Still, some are good, at least decent and others are so bad they get shut down by the state.

Look at all your options when selecting a place. Talk to others who have used that facility. That’s about all you can do because you need a break occasionally. It’s important that you don’t burn out.

Best wishes to you and your family.
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Short answer: yes. When I first brought in home helpers for my mom, she was not happy and I felt bad. You have to just pretend you're the mom dropping her child off at day care for the first time. You make sure everything is OK, then you grit your teeth and walk out the door without looking back. Then enjoy your respite time. You actually might both benefit from the break in the long run. Good luck!
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SP, how are you feeling now that it is the 5th night? Have you been able to relax and think about you and do what you want? Sleep better? I know all of those things were hard. It is a complete shifting of gears and just take time to recuperate.

Do you want to bring him home? Do you want to leave him where he is? That would be ok, and I know I would just feel like running away. There is nothing harder than making the best decision for you when you have the dedication that you obviously do, then add to it the guilt.

If you are dreading bringing him home, DON'T. He will be ok with the pros caring for him, and you would be able to visit as you want to. A completely different dynamic.
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SP2020 Oct 2020
I was so happy to pick him up. He came home with two infections, though. His care was not what I had hoped for even knowing that no one will care for him the way I do. I expected better treatment. His infections were indicative of not changing his pullups and was left idle most of the day and consequently got infected. I hesitated to report the care and today I felt it was the right thing to do and reported it.
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Wow, lots of guilt tripping today. Caregiver burnout is a real threat. Everyone needs a break from it, or you stand the chance of a health risk yourself. The ones you don’t take a break aren’t doing themselves any favors. Their systems are overloaded, and they power through, which puts them at risk for all kinds of major medical incidents. Sure, some will get through it, seemingly unscathed. But there is always damage from that kind of stress and the duration.

Enjoy your time away. You know he is safe and fed and cared for. Those are the important things. So tuck it away and go relax and recharge, because your normal life will begin again far too soon.
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Imho, you required respite else you fall faint and ill and are good to no one. Prayers sent.
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I know how difficult this whole situation is for you and if good thoughts, prayers and virtual hugs make it better, then you have mine. Covid is making life difficult for all of us no matter what our health state but please consider this: if you had to put him somewhere, I am assuming that you are his sole caregiver - no relatives who could step up for 3-5 nights correct? Assuming that you are older than 19, you are probably burnt out from care giving duties and stress. So if you continue without a break and your health breaks down........ who is going to care for your husband? And if you need to go rehab for yourself........ there is no guarantee that you would both be in the same facility.
If you are a spiritual person.... put this in a higher power's hands and take the respite with grace and try to relax just for a moment. What will happen will happen, good or bad, wanted or unwanted. You have not abandoned him. Be at peace.
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Why would you do that to him with COVID-19 around?
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gaknitter Sep 2020
You've apparently not been to the point of needing respite care. I had to face that last year as I was on verge of nervous breakdown. What good would it be for her to bring down her own health and for how long? I've been FT caregiver to my spouse since 2010. This was the only time I had to place him for 8 days. Seems like the facility he is in is doing what needs to done to protect residents from Covid.
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My mom passed away going on 5 years ago now. Since then, my dad has lived with us because he didn’t want to live alone. For the first 2 years my dad was able to be on his own so we could get away. After 2 falls in the middle of the night we knew we would no longer be able to leave him alone. So, after 2 years, my husband and I FINALLY decided to take a respite. My father made us feel so guilty about hiring a service to come and spend the 3 nights with him. Thankfully, I have a brother (who lives 3 states away) stepped up and talked to my dad about how important it is for us to get away. My dad is now 87 years old.

I totally understand how you feel, but you also need to take care of yourself!
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OMG...I did not know that was possible! My husband is now 66 and has had ALZ since he was 58. I have had no break and have been unable to leave him alone the last 3 yrs. I started 2 weeks ago with a lady coming every two weeks for 4 hrs and even at that he starts getting moody and unhappy after 3 hrs. He thinks she is there to clean house. The grief of leaving him 4 hrs then having him mad when I get home may be too much. I still have a business and need to see a client and will be gone 6 hrs and he is already wanting to go with me. Not sure how to deal with the caregiver... because I worry about her feelings. I am proud of you for taking 5 days.... maybe some day soon.
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NeedHelpWithMom Sep 2020
I hope that you can get a longer break soon. You have to be exhausted. Take care.
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I think you did the right thing. My boss today told me that we need to recharge our batteries... I was also thinking about taking a week next year. I wonder if it will be possible... I managed to go away for 3 days last August but it was not really enough.
I left my mom with my son and a friend studying to become a caregiver or a nurse... But I was calling home 3 times a day to know if they were ok. I think that a facility would make me feel more secure.
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SP2020, I know how you feel. Many caregivers are having the same problems, we need the break from caregiving, but at the same time, we worry about the whole Covid situation and the isolation. We are burning out, but also feel guilty for sending them to respite. I personally am not sending my husband to respite, because I know he will not get out of bed, will not drink any water and will come back home in bad shape, it happened before. If the home was fully open then they get them up and make him go to the dining room for meals, but, as much as I need the rest, this would not be helpful.
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I can only imagine how difficult that was. Fortunately, you had only five nights. With my mom, quarantine lasted 14 days. When we were finally able to visit, it was for a 30 minute outdoor visit. We couldn't even see what she was able to do.
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I am sure we would all feel guilty but you apparently did need some time for yourself.  I know a lot of people write on here things that I don't see (additions to their story beforehand that I don't know how to find), but I am guessing that he either has some dementia or other issues that needs constant care.  You have to take care of yourself in order to care for your hubby.  IF you get sick and down, then what happens.  IF you can do this periodically then that is great or maybe you can find someone to come into your home a couple times a week for several hours and you just go somewhere to get out.  go to a park where you can just sit and read or just sit and relax.  Go for a walk or grab something to eat and have it in your car while relaxing.  It might not be much but better than nothing.  wishing you luck and relaxation during this 5 night timeframe.
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I would love to get my husband into a facility for respite so I could have some time. I’m also taking care of him from October 2019. He also has many medical issues. Our respite care is a 30 day minimum. Which I can’t do. Very expensive and too long. I think what you did is fantastic for you and him. It’s only natural to break down because we do everything for them everyday. It’s like taking care of our babies again. Part of you probably feels guilty and that’s understandable. I wish you enjoy your time away and he will be fine when you get back. I’m sure you will call him everyday. Stay safe
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Hi SP2020,

Believe me, It's OK. I know how you feel when my husband was in rehab for longer than 5 nights. Later I realized it was fine, he got help, I got a break. Try to Enjoy yourself for the time off!! :)
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Despite the flowery responses, realize with Respite you are essentially putting him in a nursing home so you can take a break. There are risks with any kind of institutionalized care. If he was able to walk, there is a chance he will lose that ability due to staff having a fear of falling and liability in that. So they do a lot of bed rest.

Your loved one can catch any kind of diseases in the facility and sometimes transmitted by the care workers or other visitors. Sometimes the change of environment can cause delirium, and they never do recover from that. Workers can be walking around with a cold which may be mild for them but can turn into pneumonia for your loved one if they catch it.

Just realize there ARE RISKS putting your loved one in respite care.

My mom suffered Alzheimer's disease for 15 years and was on Hospice for two years. While they kept on pushing for "respite care" I told them NO because I do NOT trust any kind of institionalized care. I DID get sitters like my best friend so I can put a day of work in a week--someone I really trust, and both my and my mom thrived. Mom died age 90 and ended up with the most severe form of Alzheimer's you can imagine she no longer responded to the environment, and with a feeding tube to keep her needs met so she did not have to die of dehydration. Her body actually got strong...but she died of OTHER natural causes. Same would have happened even without Alzheimer's disease. She was insulin-dependent diabetic for decades and had ongoing kidney disease due to metabolic syndrome, but mom made it to age 90, and her skin was in perfect condition. She never needed a single drop of narcotic or psychotropic..hospice nurse came daily when she was actively dying and we never had to break open the "comfort pack" or emergency kit. Not once. She was very comfortable. Except when I had to turn and clean her...other than that she was as peaceful as she could be. I walked mom a quarter of a mile every single day for 5 years...she was only bed ridden for 2-1/2 months she could no longer focus on the task of standing...but still she was very comfortable. She was happy and comfortable. That's all that mattered. My mom was the center of my life for many years, so I did not care what I had to do to make mom comfortable--I gladly did it to help her. When she died, I felt really lost because I could not think outside the box of caring for mom. It was quite an adjustment...STILL adjusting after nearly a year, but I'm working my job, also working toward my Master's degree..just chugging right along living life. Keeping busy, living life. Because mom would want me to do that, and my 3 cats depend on me. They are my family now.

Working with my best friend I never needed respite care.
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wolflover451 Sep 2020
everyone realizes that when someone goes into a NH there are risks.  There are risks at home also, this lady could easily go out to a store and bring something home.  Not everyone has a stern interior/exterior to handle things 24/7 without a break.  Even if she has a friend come in, who is to say that friend won't bring something into the house.  And some people need a break in order to continue caring in a positive way.  I also watch out for my mother (one house away) that is 93.  I do mail/paper every day, I take her extra food every day. I take to all appointments/make all appts, etc.  But there is no way that I could live or take care of her 24/7 because I would soon either regret her because of the situation and then might say some hurtful things.  And not all friends want that responsibility either.  I think she did a wonderful thing to give herself a break so she can continue with a lighter heart.
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I placed my Husband in Respite while I took my first vacation in 6 years.
I was a basket case.
I worried that he would be so used to institutional living that I might not be able to bring him home.
I was worried that if something did happen I was a half a world away and I would not get to him in time.
I was worried that he would forget who I was (I was not sure if he knew who I was anyway)
I was worried that I did not really know who I was without someone to care for, could I have fun, could I enjoy myself and not feel guilty that I was doing this without him. (even before he had dementia he would have hated this trip, he would have gone for me but he would not have enjoyed it)

I had no need to worry.
He came home, walked in and went and sat in his recliner like he always did.
Nothing major happened.
I did have a good time.
I came home more relaxed. We both fell into the same routine.
By the way I was gone for almost 3 weeks...your 5 nights will pass quickly, more quickly than you can imagine.
Enjoy your time away. No one can be "on the job" 24/7. You need this break.
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mally1 Sep 2020
Nice going Grandma!
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I am in the same situation. I am working with Hospice to schedule respite. I am struggling with the guilty thoughts of doing what is best for me and passing my problems off on someone else. My head says this will be good for both of us but my heart is breaking.
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Dusing this time, I would not have dropped him off anywhere that wouldn't allow me to see him.

I understand you need you time and need a break.

It would be Safer, to hire a Caregiver to come to your home from 2 hrs to 24 hrs.

You should ask for help from family and friends. to see if they could each give you a few hours break every day.

Prayers
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JColl7 Sep 2020
You have to be careful bringing in a caregiver. My friend’s mother got COVID from a caregiver that came to her house. Think about it, you don’t know where she’s been and how many other homes she’s been to. At least in a facility they are tested regularly and have safe protocols they must follow.
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Be thankful you can bring him home in 5 days. It's breaking my heart that I had to admit my husband, age 68, to a facility due to his Alzheimers, which has progressed over the past 4 years. He keeps asking to come home, and the GUILT I'm going through is overwhelming. On the other hand, I find my physical health improving from not having the stress of 24/7 caregiving, without help. Due to Covid, in home care is almost impossible, since our local places can't hardly keep staff employees, and it was impossible to get on call help as needed. I pray to God for strength, comfort, and that my husband gets the comfort and care that he needs. This is a costly move, but he's getting the best care that I can't give him. Sadly, some family and friends disagree with my decision to place him in a facility "so soon", but they're not here 24/7 to see what a caregiver has to go through. Please continue to pray every day. It really helps. God Bless you and your family.
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SP2020 Oct 2020
I'm so sorry. I completely identify with what you're going through. It was heart wrenching for me to listen to my husband ask me, "are you coming to pick me up?", "are you on your way?". This was the same day I dropped him off. I cried and cried, but I really needed the break and taxing activities from day to day from caregiving. I don't have any help as well. I am his sole caregiver.
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Everything is more difficult because of the pandemic. You are doing a heroic job of caring for your husband, but you also must take care of yourself so that you can be there for him (and please don't feel guilty about taking care of yourself). You are doing your best. And also think about getting some help for yourself when he returns home (talk to a social worker or community organization that knows about elder care). Are you able to get aides to come in and give you a break a few times a week? When you see a loved one declining, it is very emotional and grief is normal. Also accept that you have a right to grieve. Forgive yourself if you cannot be perfect and be good to yourself.
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Hugs. Try and enjoy the respite!!
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You might be pleasantly surprised at how well he does with socialization of others. It was a total surprise us that our dad did so incredibly well when we entered him into AL. He loved it!!
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Is this a place you would consider for him later, when it becomes even harder for you to care for him at home? If so, it wouldn't hurt for him to get used to it....
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SP2020 Oct 2020
No, it is not the place I would consider for him later in his life. It was offered through hospice care.
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SP2020, you have not abandoned him, 5 days for you is such a short time in the grand scheme of things.

Can I suggest that you take this time to get rested and do some things that help you feel fulfilled and good. Then when you bring him home, find a housekeeper that can do the house 2x a month and find a companion sitter to come in every other week for as many hours as you can afford or whatever is free from local services and do some things for you.

Being the best you takes effort, you must create chances to enrich you so you can be the best caregiver possible.

Great big warm hug!🤗
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I know exactly how you feel. That breaks my heart and makes me cry too.

Just look at it on the bright side. At least your husband does not have to stay at the facility all the time. Feel relieved knowing he is coming back home.

Just breathe.

Bless your heart.
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SP2020 Oct 2020
Thank you so much. I picked him up and couldn't have been more relieved to have him with me. The break was much needed and I feel more rest and relaxed and ready to continue our "routine".
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I understand. However, your health is equally important... physical and mental. 24/7 caregiving to a family
member is not the same as working a shift and going home for the night or weekend. You need this break.
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You deserve time for yourself too. You aren’t responsible for the COVID situation so try not to let it get to you. We will all be glad when things get back to normal.

Try to let go of any guilt. You need rest, a break and guilt can interfere with relaxation.

Take care.
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SP, there may be another way to view this.   Your husband will have more people to care for him, and hopefully the care will be good.   If he's outgoing, he may be able to interact with them, create some short term bonds, and really benefit from the respite care.

You also should consider that you're doing perhaps the best thing you can to ensure that you're still able to care for him, by taking time for yourself.  

I understand becoming emotional; I don't know of anyone who wouldn't under the circumstances.  It's a reflection of how much you care.   

I'm assuming that he has access to a phone, and you can call him periodically?
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5 days will be over in the blink of an eye, in reality, so don't waste 5 minutes of the precious off time you do have feeling a useless emotion like guilt. Even God rested on the 7th day. Not expecting yourself to have any time off in years, months, weeks and days of constant care giving is unrealistic and quite dangerous, in fact. What would happen to your husband if YOU were to die first, which happens in many such care giving cases?

After you go pick him up from respite, make reservations for his next stay so you'll have something to look forward to.
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