Feeling guilty about Mom in nursing home, Dad still at home and lonely. Any advice?

Looks like I repeated myself about visiting more than once a day! Sorry about that, the "morning coffee" hasn't hit me yet!

To make a long story short: I visited my mom sometimes more than once a day. When she'd say something about coming home, I'd just reassure her that once she got done with her physical therapy and I got done with mine (explained that I had gotten very depressed because she had to be there and I was getting therapy) she would be able to come home. I knew she wasn't coming home, but I could see she was satisfied with that answer. Some well meaning people told me not to go to see her everyday. I couldn't do that. This was my mom. Thankfully the NH is less than a mile from my house, so I saw her every day, sometimes even more than once a day. I know often she'd forget I had been there, but I knew I was there, and that is what helped me cope. I totally agree with Karenp. Get outside therapy. If you need antidepressents, get them. Keep yourself healthy and strong, that's the only way you will be a benefit to others. Visit her whenever you want to. You won't regret it when she's gone.

Thomas10; is your wife being seen by a psychiatrist and treated for her Bipolar disorder? Medication can be a real game changer in this illness.Even by phone, you can be her advocate. Talk to the staff at the facility; find out who the best point person is to communicate with, sometimes it's the nurse who cares for your wife, or the social worker. Participate in the treatment plan; you may fell better what is going on from THEIR point of view as well as your wife's. It will also help you to explain to her better why this is the ONLY choice right now.

To thomasr01- I can see how your burdens would tear you up. It is ALOT to bear, but you don't have to bear them alone. God is a burden bearer. I encourage you to cast your burdens on Him and leave them with Him. I don't know if you have a relationship with Jesus, but you can ask Him to come into your life to be your Lord and Savior. Together you and Jesus can handle this. He will help you all the way and this will help your wife as well. This separation could very well be God ordained.....Gods way of separating you to draw you to Him to ultimately help you both. He loves you both very much.
Though you and your wife are separated physically, at least you DO maintain phone contact, so, you are NOT abandoning her. You might consider also sending her a card every few days with loving notes. Women love cards.
GOd bless...........and I will be praying for you.
Chris

I can relate. I've had to put my wife in 4 rehabs this year; the one she's in now has somehow arranged to keep her there. She AND the rehab know that this woman cannot be discharged to my care as I' m disabled also and it almost killed me taking care of her for as long as I did. My guilt arises from the fact that she's in another county (only facility that could take her)and I have no transportation. I cannot get there by public transit (not practical or possible. Her only family is 2 hrs away and she's there virtually alone. I feel as though I've deserted her and all I can do is maintain phone contact with her. Her brother goes to see her every 3 wks. and that's it. I had no choice. I CANNOT physically care for her. We're trying to get her medicaid (Fla) and possibly get her into an ALF but I'm not sure she's physically up to that. I'm not able to deal with this guilt or the fact that no matter how hard I tried I simply I simply CANNOT care for us both. She's extremely bi polar and consequently delusional and keeps trying to make arrangements to "get an apartment" she cannot afford this and there is no one person who could care for her even if she could. Any suggestions? Living with this burden is destroying me inside.

St Mag's post gives you in a nutshell the difference between a good and a bad facility, and the potential difference between being a burned out sole caregiver and an involved, caring daughter. All facilities are not this ideal or this positive, but if you have to use one, find one where the staff are involved and people are being treated as individuals and offered the best quality of life possible. A resident or visiting cat or dog is typically a good sign that a place values interaction and joy for the residents over convenience and efficiency for the staff.

Braida,.
I have been where you are. I loved my mom so much...only daughter and she was my best friend. I had to really think about what was best for my mom. Skilled care offers that transition. It is not permanent, yet ,gives everyone involved a chance to step back, take a breath, and get an objective look at things. I always said my parents would NEVER be anywhere except in my care. That was my heart speaking and me being selfish. Others helped me see what was best for mom. She entered Skilled Care in November and by January, the "team" of professionals were able to guide me and encouraged my mom to stay in their care, as a NH resident, at least for the winter months. My mom was engaging in activities, eating better, no med errors, and she was praying for others again. She was only 76 so it was very difficult for me to have her stay there. I visited everyday! I put puzzles together with her, went to her physical therapy , she had her hair and nails done weekly without ever having to go outdoors, and the physical therapist had a dog that came to work with her, so my mom was overjoyed...she loved dogs. She would save scraps of her food and feed them to the dog when the dog made rounds. The NH had weekly Masses and daily prayer services,they gave my mom the chore of feeding the parakeets daily, and there was entertainment from school children, Bingo, Christmas parties, etc. My mom would still ask, "When can I go home?", but I think she thought she needed to say that because my brothers, who were of no assistance, wanted her out of there because it cost money and it was using their inheritance. Unfortunately, my mom caught the Flu in March and died within a week, but I feel good knowing I chose what was best for her the last few months of her life. She was smiling again. a sister-in-law told me,"Maybe she just needed to get right with God again after losing dad the year before." And I believe that to be true. Yes, I lost my dad in Jan 2011, and mom March 2012. My heart aches with their loss, but I have no guilt and I remained healthy through it all, thanks to love and support from others that had my parent's well being as top priority. You can always PM me if interested.

I hope you don't take some of the advice that says to "stop visiting." That seems really unkind to me. They live in the moment, so the more happy moments she has with you visiting her, the better! Yes, she may cry when you leave, but at least she'll see you again maybe the next day. If it was my Mom, I'd visit way more than once a week. That way you maybe won't feel so guilty that she has to be there. I am feeling on the verge of having my Mom go somewhere as well, because I'm getting so exhausted and burnt out. So far I just can't bring myself to it. I'm afraid she'd be like a frightened confused two year old. I'd die of guilt. But, I may die of exhaustion if I don't make a change. Oh God, it's tough. I wish I could be strong enough to be strong....but I'm weak. :( My very best wishes and hugs to you and your dear Mom.

Don't feel guilty, you did the right thing for everyone involved including mom and getting her the skilled care she needs. Try to get dad over to visit as often as he is able; you don't have to go in if you think it is better for you or her in the short term.

Respond, "you can come home as soon as doctor thinks you are able" and leave it at that. Reassure her, you will visit often and say ute and fir or whatever you can manage. Bring little treats when you come, including maybe bringing lunch for you and her, or her and your dad and make it special and something to look forward to. Maybe even some home cooking you prepare and bring. Switch it up, and maybe do dinner or a Sunday brunch.

It is hard for the adjustment depending on her mental state. Talk to the case worker or her care team about your concerns and see what they recommend or ask for their help in smoothing the transition. Can you make her room more homey with large pictures, her favorite lamp or chair, familiar bedding, coverlet? Anything you can do to make it seem less institutional.

I want to thank everyone for their helpful comments and information....I too feel the guilt.....my mother is in a differrent state.....I started going to counseling and hospice meetings.....I send a letter or card every week and only can handle one call a week to her.....you have to protect your own health first....warmest wishes to all...

Picture, and Nancy - you are both suffering from feeling you cannot do or didn't do good enough. You tried to do what was best, you tried to give the best care possible, you accomplished many things in the course of your parent's decline, but ultimately, you cannot stop the decline. The grief and regret is understandable, even if very little of it is merited!

Assisted living and skilled nursing facilities are not the worst thing for everybody. Some are very good, some don't work out for some people, some are very bad. Caregiving at home is not the best thing for everybody either. Sometimes it is not possible because the caregiver just can't do any more, or cope with the person's unhappiness or behaviors. Even if you are doing CPR, exhaustion if there is no one else to help is a reason to stop. Don't try to do a thing you cannot do/that cannot be done.

From the point of view of the person in the facility, they may want and expect to go home. it is understandable. My mom did the same thing - mediocre participation in therapy at best, but wanted to walk again and go home. To her home, by herself, no help beyond maybe a LifeLine and her good neighbors. It was not fully necessary that she ever say to herself or to me "I'm never going home again." We did al lot to make her life pleasant and to make good memories for all of us for those three years. It was hard. She never had to feel abandoned and oen of us (me) was with her when she died. As time goes on, I feel more comfortable saying it was the best we could do. There are little things that could have gone better, emotional upsets I did not need to have, but I did keep some bad things from happening and I did not destroy my family in the process...

These things are hard. If you can help it, don't let guilt and depression drive your decisions, or predjudices about facilities versus home care...nor ruin any quality of life you may have during these caregiving years, however long or short they may turn out to be. There is no one size fits all solution here!

I felt so bad having to put my mom in a nursing home after having her with me for 32 years, I had a "psychotic break" 2 days after doing so. I too had suffered from depression but this is what "broke" me. Thankfully I only had to spend a few days in the hospital to get my potassium levels, etc. back to normal. When I got released mom always asked when she was coming home. She had Lewy Body Dementia. This disease was foreign to me. My mom had always been a level headed woman, even at 95. Suddenly though, this disease worked havoc on my mom's brain. Hallucinations, paranoia, you name it. It all happened in a week! They told me my mom had about 3 months left. I never stopped visiting. In a way, if you keep the visits constant, it becomes more of a "pattern" for them. It takes a little time to adjust. I always told my mom I was getting therapy (for the breakdown), and that right at this time it was a little to hard to take care of her by myself. I'd cry, boy would I cry, because I wanted to take care of her. She seemed to understand that (on her good days). On the bad days when the dementia would take over, I started to realize that whatever she was disturbed about would pass. She forgot it. I think just telling my mom she will be able to come home when I would be able to take care of her again did the trick for me. Then, when the dementia led to swallowing issues, mom developed pneumonia. I had to put her on hospice. Hospice promised I could take her home if that was my desire. I told my mom she was going to be able to come home. She knew she was sick, so she looked at me and in her quick witted way, she said: Why, so they can bring me back to this place? It was then that I knew if she was content where she was I would just leave things the way they were. No sense having her brought out into the cold if she was content. That night she saw her whole family. She told me to go home around 8pm because she knew I was "exhausted" as she put it. That was the last night she spoke to me. The next morning she never regained consciousness and she was gone a week later. Whatever you do, keep yourself healthy, but stay a part of your mom's life. You won't regret it. I agree with Lucy's mom. Visit and try to keep a positive attitude.

Nancy59, you are not a bad person because of your feelings. You are doing a wonderful job taking care of your mother and have not done anything to feel guilty for. I realize that you were venting and did not ask for any input, but my heart goes out to you and must say a few things.

Alzheimers does become more and more difficult to deal with and what you are feeling like the person in front of you is not your mother anymore is the result of the disease and I would imagine that you are experiencing some anticipatory grief. Sometimes feelings like the urge to run away is due to feeling overwhelmed to the point of everything being beyond one's ability to deal with it all. It may be possible that your mother's Alzheimers has reached a level that is beyond your ability to take care of at home 24/7.Some of your anxiety may be a form of separation anxiety because your mother's increased decline means more separatedness from the mother you used to know and loved spending time with and could not imagine your life without. While it is tough to imagine your life without your mom being the mom she used to be, you will be able to go on with your life and with your marriage.

I assume that you are taking something for your depression and anxiety. If not, I recommend that you do. Also, I think seeing a therapist to help you with your emotions would be a good idea. I wish you the best.

My parents live in an assistant living facility. When they moved there a year ago my dad was in pretty good shape. My mom is in a wheelchair and he took care of her. He pushed her to the dining room, beauty salon etc. Several months ago he had a heart attack and had to have quadruple bypass. He was in rehab for several weeks. He came home and hasn't been the same. He is confused a lot and he has fallen a couple times a week. He fell again today and I decided to rent him a wheelchair. He wasn't happy at all. He said he didn't need a wheelchair. I told him that he needed to use this until his lightheadedness quit.
I am becoming really resentful. I hate having this feeling but I can't help it. I am paying over 300.00 a month so that they can stay where they are but they don't seem the least bit thankful. My mom calls me every day complaining about the food, visiting doctors and more. She has nothing positive to say. I don't know how long I will be able to help them financially. Their rent went up this year and if I don't help them, they won't be able to stay there. Every time I say they might have to do something different, she says she would rather die than go to a home. My dad says the same thing. We live in Austin,TX. Does anyone know of a good long term facility here? If my dad keeps falling, I am going to have to do something. Thanks for listening to me vent.

My mom has Alzheimers, she's 90 years old. I am the only child. I became her caregiver and I have guilty feelings all the time. She was my best friend, we were together all the time, I couldn't imagine my life without her. I suffer from depression and anxiety, besides I have several health issues like heart and liver disease. I stop working to take care of her, but lately I feel more and more dificult to deal with her illness. I feel like the person in front of me is not my mother anymore. I have this urge to run away, my anxiety is out of control. She has been an excellent mom. I feel so guilty and a very bad person for these feeling. I ask myself where is my love for her, I take a good care of her, but I can't show love. I don't understand what's going on with me. Why I am feeling this way toward a person that was so important to me, that I loved more than my own life. I am desperate. My husband said I am doing a great job, but I know what I am feeling and that's is killing me. Sorry, but I just needed to vent. My english is not that good, sorry again.

All I know is that if my sisters and I had kept her at home and brought in 24 hour help, we would not be crying everyday even 2 years later. She never forgot us, and the fights I had to have with the Memory care ward & administration, she there because she kept getting up and falling. So then the drugs started and the decline escalated and me fighting for her over and over, get her off these drugs and finding too late that she (and many other elderly) most likely had hydrocephalus—trouble with balance, motor control, memory and urinary continence—can mimic symptoms of other conditions that typically show up in older adults.
http://www.hopkinsmedicine.org/news/publications/johns_hopkins_health/spring_2011/just_old_age__or_brain_fluid_buildup If keeping her home and enduring it there would of kept me and my sister from the pain we are having to endure now... we would of brought her home. I hate the homes for their inconsitant care and have so many stories from me and for other people placed there. I can't imaging what it is like for elderly who don't have someone like me, attending to drugs added, food not being eaten, bedding being stolen or lost, inattention, chair alarm I bought disappearing, on and on. But they want their money. I now know hell and hate that I let my mom receive it on on her way toward her death. I am being more than serious.

All i can say is dont feel guilty I am looking after my mum alone here and although shes not broken anything yet? shes very demanding I also lost my dad recently and cant seem to be able to grieve properly with her constant demands my health has suffered to and my doc wants me to find a solution OR ELSE? I know im getting more ill as this goes on the stress is just too much I cry just thinking about her going into a home against her will but if im to have a life and get better then a home is the only solution. She has just recently cleared out her bank account as shes not keeping track of money and i have spent the week ringing around her debtors to explain her illness.
Im now drained and have pains all over my body how much longer can I do this without going mad?
One thing that keeps me from feeling guilty is "my old mum would never have wanted me to be so miserable". Your mum would want you to be happy otherwise whats the point? Do your best but take time for yourself this job is impossible to do on your own I cant imagine looking after both parents even looking after my mum AND my cat is sometimes too much!
Chin up do your best and know that there are alot of people out there who do not care for thier parents like we do, you did everything to keep your mum safe and at home sometimes this just isnt possible I never in my life thought my mum would end up in a home and that it would be me who had to put her there but i know that I care for her very much but I just cant cope alone!
Big Hug this job is hard!

I'm so sorry you are going through all this. Caregiving certainly does pull on the emotions....no matter what you do, don't do and no matter what happens or doesn't happen.
I encourage you to pour out your heart to God and tell Him all you are feeling and going through and then leave it in His lap. He DOES listen and is there for you 24/7 and He will help you see this in a new light.
God bless. Chris

Deal with your depression first and those thoughts of guilt are mainly some of the depressive thoughts. Give yourself permission to grieve her absence, but know she is in a place where professionals can care for her. Just tell her you will visit when you feel up to it, and don't let her rush you. If you are not getting any better by now, either switch meds or doctors. Two years is a long time to not feel well. From someone who has been there done that.

I always think of the analogy that if you are on an airplane that is going down, you must put on YOUR oxygen mask FIRST before you can help someone else. I always tell my mom that if dad were in a LTC facility she could participate more in the "wife" role than just always the caregiver role. Every minute and every breath is spent taking care of him. The time she spent with him could be more about the two of them rather than how many diapers left, poop on the floor and her scrubbing, whether he is choking or not, what level the hospital bed should be, or which of her children will be there on which night to help. It would be better for ALL of us and our mentality for dad to have 24 hour care.

My mom had dementia and broke her hip. She refused to do therapy or even try to get out of the wheelchair. Therefore she went from being a rehab patient to a regular patient at the facility. She would ask us to get her pocketbook as it was time to go home. We would change the subject or tell her it wasn't time yet. Eventually she stopped asking. Either my dad or I were there every day with her. There was never a day when one of us wasn't there. We got her to play bingo and she did a good job! She loved when the entertainers came. She could sing the words to every song, yet couldn't remember what she had for lunch that day. She wouldn't remember my children, yet she never forgot me. I think it was because I was a constant presence in her life. She would even look out the window and see me driving in and tell my dad, here comes Carol. I think that if you keep a positive attitude and a happy face around them it helps them to cope. Only my opinion, but it worked for my mom.

Dealing with parents and making those tough decisions are never easy. Stop feeling guilty about mom as she is being taken care of the best way and you did the right thing for your parents. Take this time to really begin to enjoy the time with your mother at the long term care facility. Get involved witht he resident council, join in on special functions with your mother, and have lunch with her as often as you can. She will always ask about going home and you may not be able to change so let her ask and you smile and say, "This is your home now." It is very difficult to see your loved ones grow old. Remember, aging is the part of life that plays a very important role in the human life cycle. This is the time to heal some of the hurts from an earlier part of your life with your mother and a time to help her see you as her wonderful daughter. Please, please take care of yourself and get help for your depression, but at the same time, enjoy the remainding days of your mother's life with love, caring, and laughter.

This is the hardest decision my siblings and I have ever made in our lives and we continue to struggle with it, even if we accept it. We have found that our presence has made a significant difference in my Mother well being.

I had to place my Dad in a nursing home after a fall that left him unable to walk. When he asked to go home, I said that he would need to be able to get out of bed and transfer by himself and go to the bathroom and back to bed safely before he could go home. He was 6 ft 2 and a large guy, it took 2 girls to get him to the bathroom and I could not have done it by myself. The price to hire a caregiver 24hrs was three times what the nursing home cost, he couldn't afford that and he understood. He worked on his physical therapy, though he never improved enough to go home. I visited almost every day, as painful as it was. I couldn't take care of him by myself. He had skilled people there who could watch the condition of his skin and monitor health problems as they popped up. I found that as much as it hurt, I had to be honest and tell him the situation and that it wasn't because I didn't love him and that I would be there by his side through whatever came up in the future. He wouldn't be facing this alone.
I wouldn't advise to stop visiting, just visit and be honest. If that doesn't work, change the subject or bring some photos to go through. Bring articles from the paper to read and if you start to feel anxious, leave and go for a walk or talk to the nurses. You are feeling pain because you are a caring and compassionate person. I wish you strength to get through this time of adjustment : )

I, also , was the caregiver,daughter, homemaker, entertainment, time manager, bill payer...well, you get it...for both my parents the last 4-5 years of their lives. My dad had Pulmonary Fibrosis and lived 7 months longer than was expected. Since he was "end of life" he qualified for Hospice. I was able to set up cares and with assistance from Hospice and other private paid nurses, dad took his last breath with my sons and I holding his hand in his home. My mom was in overall worse health than my dad. He had taken care of her, but when he got sick the roles had to reverse. I encouraged her to offer him sips and help him with his urinal, etc. She had to help him when no one else was home with them. When he died, her grief was overwhelming. She wanted to die and she told me that everyday. I was daddy's girl, only daughter, and my sons were raised living arms distance from my parents, so all of us had grieving to go through as well. I had to be the strong one and cry in silence. I continued to take care of my mom, who was house bound, barely able to walk , and had severe central and obstructive sleep apnea. If she didn't keep her CPAP on at night, she was totally confused in the am due to lack of circulation of oxygen to her organs. I did everything to keep her safe. Had her meds bubble wrapped, cooked meals and had them in dishes so all she had to do was heat them in the microwave because the stove was a dangerous thing. I spent 3-4 hours a day with her..etc. But, she would fall frequently. And with her depression, physical and emotional pain, intermittent confusion, and loneliness, I realized I could not meet her needs doing this on my own. It was not fair to my mom. She didn't want to go to ALor a NH, but I was afraid I would come over to her house and find her dead on the floor. I don't believe it is God's will that anyone die alone. I had my mom admitted to Skilled Care...for physical therapy to try and get some strength built up. Medicare only pays that so long and the patient has to show progress. Being a nurse, I had hoped this would help, keep her safe and be less isolated over the winter months. At first she would ask me when she could go home, but I would just remind her about her difficulties at home and encourage her to have a positive outlook and point out how she had people at her beckon call 24 hours a day there. Within 2 months, mom made friends, her depression got better, she was engaged in activities, and started praying for others again. She even had a "special" friend who reminded her of my dad. Unfortunately my mom caught the Flu while she was at the NH and died a week later. She had so many comorbidities that her body could not fight the infection. It was her ticket out of this world and the
route home to her husband of 55 years.
There is alot more to my story, but the point of it all, is to look at the positives of what a NH or AL can offer. The elderly need socialization, medication safety, and food. If you are the lucky one that gets those last years with your parents then you have to really look at what is best for them and you. My parents were wonderful people and they would not have wanted me to become unhealthy in order to prolong their life, especially if they are suffering. And I believe that now that they have both died, that every breath that I take is a breath for them as well. This is life. It's too precious and short to feel guilty and burdened. Ask for help, ask for His guidance, and give up situations that you have no control of.

Depending on the serious effects of your mother's strokes she may need to remain in the nursing home. I would investigate if she can be in a rehab under medicare and perhaps regain enough strength and abilities to live at home with home health aides.
Given your recent illnesses, you may well not be the best person to either render the care or be living in the same home, understandable.

I firmly believe avoiding visiting to make a parent get used to a nursing home is never correct. If you can't go, get family members interested in her care to visit her. Any nursing home who wants you to ignore your mother so she gets used to a situation she doesn't want isn't acting in the best interest of your mother and probably is rendering substandard care. If they suggested this action --start shopping for a better nursing home asap.

For the fragile elderly living in homes, nursing homes or assisted living facilities, they all need to be visited regularly. They all need the reassurance that their spouse, children, grandchildren love them, that their life has a purpose. Feeling abandoned will not help them recover from any illness or deal with any long term disability.

Good luck do the best you can do. Get a family plan for your mother which does leave her with fears of abandonment.

Please don't feel guilty. You've provided your parents the best living environment for their needs. When physical and dementia related needs overwhelm the home care system in place, it's time to get our elders the professional help they need. I truly believe we honor them by doing this.

It is very comforting to me to know that others feel like I do.

I felt very guilty about putting mom in AL. Once in a blue moon I still do, but my overriding feeling is freedom to do the things I want to do that I couldn't with mom needing/demanding 100% of my time, energy, and focus. STOP THE GUILT!! It is unproductive. You have more than enough on your plate since you are taking care of your dad.

When my mother asks me "When am I coming home?" I answer, "I'm not sure mom, I'll ask" and then I IMMEDIATELY change the subject. The subject I change it to is immaterial, but a switch in attention is necessary. The best way to get her "invested" in the switch is to ask her a question about it. Could be anything? Where did you get those shoes? What day is it today? Who did you vote for last election? Anything to refocus her attention. You could also pretend you didn't hear the question.

It is VERY difficult for someone who does not have depression already to deal with this. It often takes a non depressed mind and drags it down into depression. It will make your depression worse. What good will you be to your dad with even more depression when you let the guilt get to you? What good will you be to yourself and your other family members? No good at all. Take care of yourself first. You can't take care of ANYONE else until you take care of you.

After reading the answers I feel much better because I have been under lot of pressure now lately, thinking that I have abandoned my mother. Thank you so much knowing that what I have done is good for her and for me because she will betaken care off. Thank you God bless you guys.