Relief and guilt; will it just be okay one day?

The guilt is overwhelming at first - and in the first few weeks of transferring him to a new place that he didn't understand were magnified when he spoke to you on the phone. I went through the same thing with my mother-in-law. ALZ is so difficult on the caregiver because at times they seem to know exactly what they are doing and saying and you think there must be a misdiagnosis. She has since passed away, and with more and more information being available now versus fourteen years ago helps me get over the guilt, but it has been difficult. I have to forgive myself every day because I know I didn't bring on the disease, and I realize it wasn't her saying those things when at the time I blamed myself for doing everything wrong.
Looking back, however, I KNOW that putting her in a place with people that could care for her and understand the day to day was the very best thing we could have done and once the first few weeks were over and she settled in, she did very well.

Imho, you are not being selfish as you were a STELLAR caregiver. May God bless you.

You are not being selfish. Caring for a person with ALZ for 11 years is proof of your generosity and that you are a caring person. As a person with dementia declines, it becomes more and more difficult to care for them, and eventually "it needs a village" especially as the caregivers themselves often are also aging and may have health issues. He is not alone in the memory care facility. He has staff people looking in on him, other residents in the facility, and the facility probably arranges for activities (maybe not so much in this time of covid). And yes, if the dementia is advanced, he will not understand what is happening to him and why he has to move or why you have to leave him there. People are recommending not having holiday gatherings, as the pandemic is raging across the country. Hopefully you'll be able to celebrate some other time, when things are safer. These are strange and difficult times.

Not only is this a change for hubby, the biggest change is for you. You have to find a new normal at your house and it may take awhile. I'm sorry for the mixed feelings you have at this time. A big hug!

To keep family and the kids in some sort of contact, ask about bringing an ipad or other device where, with some assistance on his end, he could see you and the family and kids could have some interaction with him.

Bless you and the family as your day to day lives take this new phase. If you believe in God, ask for strength. Pat yourself on the back for what you've done in the past - it made a difference in his life.

Hi Jennifer3, I do sympathize with you and understand how you may be feeling. After 11 1/2 years I think you have given it your best! You should pat yourself on the back for a job well done. Anyone who has been in your shoes would for sure and probably everyone would.

My husband passed February 2, 2020. He was not diagnosed until 2014 but was having major memory problems for at least four years before. He just wouldn't see a doctor. The last 2 he was incontinent. Really the last 6 or 8 were difficult. Two or three times I started to try and put him in a nursing home but then decide to put it off. His behavior was scary at times and you never knew when it would happen. On Christmas day 2019 I took him to the ER. He had pneumonia. They decided to admit him for 3 days and the plan was to send him to a nursing home. His behavior deteriorated so badly that no one would take him. Finally on January 1st, I took him home. His behavior continued to be worse and worse. Hospice was called in but nothing they did helped. On January 19, 2020, I had to call 911. I'll spare you all the details but it wasn't pretty. They took him to the hospital once again. He had to be restrained for a week. As he would not take his antibiotic the first hospital stay he still had pneumonia. At this point they decided nothing could be done and he seemed out of it. He totally stopped eating and the end came February 2, 2020.

We just do our best. Maybe I should have made the decision to place my husband in a nursing home sooner as you have because when it was apparent I couldn't care for him, no nursing home would take him.

I can barely stand to think about those last days. My husband did not know me, he didn't understand anything that was happening nor did I. I know that he wasn't living, Alzheimer's had taken everything from him. I know he's in a better place now and at peace.

You can only do so much. You aren't abandoning him but looking out for his best interest. Hopefully the pandemic situation will get better with vaccines coming soon and you will be able to visit. Meanwhile, I think you have made the right decision. God bless you and your family.

You sound grounded in your decision and dealing with what you need to, congratulations on that. It's bound to take time to let go of the grinding need to accommodate your day to a strict schedule. Best wishes to you. He is lucky to have you.

Would you mind sharing a bit about how the Veterans War home admission went? Spouse is a vet, 78, and it would be good to hear a firsthand experience about how everything got accomplished. I often think of trying for this for Spouse and for myself, too. Couples are admitted in some places, I heard.

It will come little by little for you. Someone told me when I was going through the path of Alzheimers with my mother, I was going through a grieving process, even before she had passed. And that was so true, and I had never thought of it that way. When she was admitted to the memory care home, I had relief, so felt like I could finally breath. Yet I did miss her, the person she once was. But I did know the care she was getting was best for her. Letting go and having someone else care for her. Oh, the ups and downs of feelings. But knowing I did everything I could for her and in her heart she knew I loved her, even when her current mind was broken.

Take a deep breath, exhale. Take care of yourself. It’s been a busy life for you these last years. No need to rush around. You do not need to feel guilty that you are enjoying this more relaxed life, it is time for you.

All that I learned some 13 years ago when caregiver for Mom was my training, I say, for what I am going through now as my husbands caregiver. On step at a time.

Try not to question your feelings, focus on positive things, turn up the music, move forward and keep your families love in your heart.

Eleven and a half years of caregiving and constant anxiety about your husband's well-being! You've done your best. As he declines, he needs the greater professional help you have found for him. He may be confused about his situation, but if he is "adjusting well" and making friends as reported, he is generally living moment to moment and is really not too concerned with figuring things out.

Your grandson may not have as many memories of his grandfather as your son would like, but that is not going to ruin his life. GS can be as involved as the rest of you in making cards or gifts or videos: whatever the VW Home will allow. You have done a wonderful job in finding a safe and caring place for him.

You did not give your husband this terrible disease, so don't carry the guilt of him having Alz.! It sounds like your husband was placed because his needs were to great for you to handle on your own, he needed 24/7 supervision that comes from professional caregivers. Continue to advocate for him the best way you can during this pandemic. Take care of yourself so you will be around to advocate for him!

The pandemic is hard for all residents in long-term care communities but it is particularly hard for residents with dementia. They are unable to process a pandemic and don't understand why their families are not coming to see them. Many of my clients who have dementia in long-term care communities are feeling like their families have abandon them because they can't process the current visitation restrictions.

Continue to talk to him on the phone. Many communities are doing FaceTime and video conferencing so residents and families can connect. Great idea for most but again some residents with dementia cannot process a two dimensional video call they need to see a three dimensional figure. This is a result of the progression of the dementia. Some of my clients have become fearful when they see their loved one on a video conference call. Sometimes the best option is the "window visit".

If you need help arranging a "window visit" reach out to your local Long-term Care Ombudsman Program, they could advocate for you and your loved one. There is not cost for their help.

I wish you the best, keep us updated on how things are going. Remember, you did NOT give your husband this terrible disease so don't carry the guilt of the disease.

Jennifer, I completely understand where you are coming from. My DH isn’t difficult to care for, but I can’t leave him alone for more than 30-45 min anymore. God help me, I can’t wait until he’s bad enough to place in care so I can come and go as I please. I know I’ll feel guilty, but I’m SO tired of listening to his false memories and reassuring him that his divorce occurred 35 yrs ago and his first wife wasn’t here and isn’t coming after his stuff, his money, or his middle-aged kids. It’s mentally exhausting and feels like jail with a life sentence.

There is relief. There is guilt.
There were many days after my Husband died when I thought..I have to get home, the caregiver has to leave by 3. Only to remember that there was no caregiver.
It was a long time before I could sleep through the night without waking up thinking I had a brief to change, or I had to re-position him.
Yes the holidays will be difficult. They will be different. But this year everyone's holidays will be "different".
Enjoy the holidays as best as you can. Talk about your husband. Make him still a part of your day. This year though you won't have to worry about what is going to happen. Will he want to go home, will he want others to leave, will he aspirate the mashed potatoes, will he be overly tired, will he get angry that there are a lot of people around, if you are traveling to someone house will you be able to change his clothes if his brief leaks, will you have brought enough briefs with you All the things that caregivers worry about.
For several years now I have Volunteered with a group of Veterans and we put up flags. During the display we take turns standing watch while the display is up. During that time, every hour we will read some of the names of the men and women that have been killed that are from our state by the time we take down the display all the names have been read at least 1 time. When asked why we do that this is what we say:
A soldier dies twice, once when he takes his last breath; and he dies again when he is forgotten.
Your husband will not be forgotten.
Talk about him.
Tell the grandkids what he loved to do.
Tell your grandson that he has Grandpa's nose, or smile.
Tell everyone the funny story about ---------------
Tell everyone where you met and how you met, where you went on your first date and how nervous you were.
If you keep your husband around in the stories you tell, the things you do then others will feel comfortable talking about him as well. Tell your son that his son WILL know Grandpa because you will keep him with you in your hearts, minds and in spirit.
This will also help when your husband does die. So many people are afraid to talk about a loved one that has died for fear that it will make you cry, make you sad like you are not already sad.
By the way if you can arrange it when you do visit ask the nurse or whoever is in charge where he is if they can bring him a bowl of ice cream when you visit, tell him it is from you. If you stop and get ice cream yourself you can eat it together. (I use any excuse to eat ice cream!)

You are not selfish.
You have done a lot of caregiving over the years.
Let him be cared for by others.
Caregiving is stressful and it is time to take care of yourself now.
With Veteran's Day looming...Thank him for his Service, thank you for your service to him. (and if you are also a Veteran, thank you for your Service as well)

I took care of mom for 15 years which the last several years were extremely difficult (she could not even manage her bowels and I had to keep a bowel schedule to prevent impaction)--at age 90 (ironically of other natural causes; her Alzheimer's didn't do it as her feeding tube kept her needs met), mum died. I felt a sense of relief nothing could harm her as she was extremely vulnerable, but I never regretted taking care of her. She was the center of my very life and being my entire life and I lost her.

Taking care of a total invalid is very hard and it is stressful. It was harder on me when she did die. The older you get, the more your loved ones die. LIfe is very cruel.

A fellow caregiver advised me to focus on my wife's gain, not my loss.

I dont understand, if this was going to be his last Xmas, why not just waited til after New Years to put him in a home?

Also, sorry to hear that he wasn't able to remain home with Hospice Care.

Prayers for him

So many of us have been or are in the same position. I am about to move my mom into Assisted Care. If it wasn't for Covid-19 restrictions it would still be difficult, but it has made the choice more difficult. But it comes down to only bad choices whether she stays home or not. Her well-being and my well-being, need a change.

Guilt is a part of care taking, whether it is at home or at a facility. I have come to realize that. I feel guilty with her at home all the time. I find it harder and harder to be the full time care taker. I know my mother can't help being who she is - it is not her but the disease, but after taking care of her for years, I am worn out and not the person that I want to be. I can't always be kind, I can't always let her life dictate mine.

Please forgive yourself. You have done what you can do, and the choice is the best choice that you could make.

I haven’t been able to touch my elderly mother since March when she was in the ER delirious with pneumonia. The trauma deepened her dementia and now she rarely recognizes us. It’s sad but I know she is safe and well-cared for.

My brother and I get a 30 minute restricted visit each week so we can at least see her. We joke that it was fortunate to schedule it near dinner time because she rarely lasts the entire time before she gets anxious that she will miss the meal!

She has a different reality now that doesn’t include her family anymore but she is eating well, socializing, and participating in activities and that is all we can ask for. We had her for 93 years so I don’t spend time regretting what she will not be participating in going forward. We are all moving forward with our lives, just as she did.

As to your son regretting that his son won’t have memories of his grandfather. My mother’s dad died before I was born. His children told us stories about him and their childhoods, plus we had lots of pictures so although we never met him we all have fond memories of him.

A great place to start might be to look at the Kubler-Ross stages of grief. Don't be surprised to find yourself or your loved ones going through the stages mentioned: denial, anger, bargaining... to acceptance.

It might also help to focus on the positives and realize that the negatives are fear and worry whispering in your ear. 94% of whatever we fear does not usually come to pass.

If you are a reader, you might want to look up the book - "Ambiguous Loss" by Pauline Boss. If you don't have time to read it, you might want to skim the chapters that most relate to you. They have the book at our public library or you can order it online.

I don't think "Christmas" and "Thanksgiving" are important as far as making memories go. What's important is the time you've already spent together..........the memories you've already made. The time your DH has spent with his grandson. THOSE are the times you will cherish in your heart forever. Not what 'isn't' coming next because of an unfortunate & untimely pandemic, although I don't know when would be a 'good' or 'timely' time for a pandemic TO happen.

Your DH is stricken down with a terrible affliction of the brain which has destroyed your life and his life, for the most part, let's face it. Watching a loved one wither away from the ravages of dementia/ALZ is devastating. For BOTH the caregiver/loved one and the one afflicted. It robs him of who he once was and it robs you of being all you can be because you're worried and frightened and on guard 24/7.

You did the right thing by placing him. Was it easy? Of course not. Will he adjust? Yes, totally. With YOU, he will be miserable and complaining b/c you are his sounding board. With his carers and other residents, he's likely to be fine, making friends and adjusting daily.

Now is the time for you to create your new normal. Your new schedule, your new way of doing things without looking over your shoulder or getting a knot in your stomach worrying. Allow yourself the time to mourn the loss, and this IS a loss worthy of mourning. To not grieve this situation would not be normal. But don't focus on it from a 'guilt' perspective as if you've done something 'wrong'. You haven't. You've done what's right for HIM, mainly, and then for you, secondly.

Be gentle with yourself as you adjust to the changes in your life, dear one. All the best.

Thank you for your post. It could have been written by me. My husband is a veteran too - from the Viet Nam era and Agent Orange. I can relate as I have been taking care of my 76 year old husband with PSP (similar to Parkinson's), dementia and clinically blind - full time for eleven and a half years (he was originally diagnosed in 2002). I don't have anything more to give - except the overseeing of his care - not the day to day (24/7 - 365). Especially, now with Covid - should something happen to us (as caregivers) - what would happen to our loved one. No, you are not being selfish. And, yes you deserve the freedom. It's not easy and we need to be kind to ourselves - one day at a time. (Now if I can practice what just wrote...)

Dear Jennifer3,

Maybe the question is when will guilt go away, and I think the answer is when you allow yourself to realize that what you did was exactly what he would have wanted and told you to do, if he was able to.

No one that loves you wants to see you suffering, as simple as that. He would not have wanted for you the non-life you were living.

Really think about that. If you were the one ill, what would you have wanted for your husband? Exactly the same answer he would have given you.

May God bless you, protect you and heal your guilt with light and love.

How beautiful it is that you have given him so many wonderful family experiences, AND, even in the shadows of dementia, he has been able to enjoy them.

My first grandson, born with a disability, was named with my mom’s surname. I now am caring for Mom’s youngest sister. My grandson’s visits to her AL, BEFORE Covid, were moments of joy for everyone, empathy for those on walkers and in wheelchairs, giggles at what he’d say......and for my LO, ALWAYS the brightening, the attention to her great grand nephew,.......and then COVID.

You and I have the comfort and peace of knowing that our Dear Ones are being cared for in the way we cared for them before their need for safety and peace allowed us to learn that their 24/7 care would be better placed in professional hands. We didn’t want this to happen, but we knew that it would be a choice we might have to make.

I cherish the 5 visits, outside, socially distanced, masked, that we had before it got too cold to have her brought outside. I told her we love her and miss our visits and that Wilson misses her and loves school and sends his love.

Please put your guilt underneath the love and concern you feel for your husband and don’t let it slip out from under that love. “Guilt” has nothing to offer you or your LO, but with time you will find that the love you (and he) have for one another continues.

Celebrate his presence in your grandchild’s life whether they are ever together again in this world or not. Teach him in little ways that there was a fine man who knew and loved him.

You are feeling emotions that are shared by all of us who have loved and cared for. Be at peace that you have done well.

Jennifer, you are clearly an amazing and loving person. Doing the right thing is often not easy, but time will heal. The important thing is doing what seems most right. You have helped him get the care he needs. As your day to day habits change with time, you will remember that you cared and that you have done the right thing. Stay strong.

This is a very imperfect world and sometimes there are just NO good answers. You have to do what you have to do, and earning your living is certainly among those things. You do what you can and let go of guilt, which actually improves nothing.

I am going through similar situation. I am now guardian of my 78 yr old dad. He has dementia, but about mid stage. His body is failing faster than his mind he’s in kidney failure, brittle diabetic, has a huge mass in lung. He was in nursing home 1 year placed by my stepmom. I took him out 2 weeks ago and brought him home. He was so happy. But I didn’t know how hard it would be. I didn’t sleep for two weeks. Just an hour of 30 min here and there. I had to sleep in the room with him. He has severe COPD too. I couldn’t afford to hire a caregiver I tried and I couldn’t afford it. I offered live in accommodations plus salary and no responses. I had to return him to nursing home. I found a small one and I tricked him by saying he was going into the hospital. He does have several specialist scheduled to see him. I placed him yesterday. He flipped out. They had to put him alone and away from isolation room and try to sedate him. He called 18 times. I couldn’t answer. I listened to his vm and had to stop I cried all way home and I can’t stop. I just wasn’t able to do it unless I hired someone AND quit my job. But now the pain won’t stop. I feel tremendous guilt. So I can’t tell you how yours will either. Everyone says you did the right thing. I’m sure you hear that too. But to me the right thing is if we could keep them comfortable at home until death without paying more money than we can afford. I wished with all my heart I could’ve done that and I hate that my dad is going to die in a nursing home. It sounds like you did it for a very long time so it will take time. I only did it for 2 weeks and physically wasn’t able to stay up without sleep any longer. We both are grieving. Hopefully people can give us support here.

Hello Jennifer. You took care of your husband for eleven years , that is admirable but placing him is in his best interest as well as yours and certainly not selfish. We placed my dear brother in a veterans hospital years ago, he got sick back in the 60's when a so called friend put drugs in his drink, he was never the same. We were upset but relieved he was well taken care of. My parents would not place him so I stepped in. No guilt here, best interest of my brother. He was swimming in the cold Atlantic ocean late at night when a dear police officer pick him up and called us. That was the last time and we placed him. We were always visiting him, taking him home for visits and very involved with his care. You can still be involved, visit him often, talk on the phone, send cards, check and make sure he is getting the best of care. Your husband will adjust but it will take a little time and you will start to feel better with your decision. Life is short , be kind to yourself and live one day at a time. Blessings sent to both you and your dear husband.

Jennifer3,
I know this feeling so well. Your post brought it right back to my heart. I had to place my dad in an assisted living. It was not easy. Covid made things even more difficult. He was so strong to go, but I remember looking back it him before leaving. He looked like a frightened little boy on the first day of kindergarten. I felt so many different feelings, but one was relief. I knew he would be as safe as possible. I also mislabeled the “g” word as AlvaDeer mentioned. I was experiencing grief...but thought it was guilt. You and your family are in my thoughts and prayers.

"When will the relief and guilt mesh together?" What a profound question. I've never heard that before. The answer is, I don't know. We all grieve differently and although your husband hasn't died yet, you are already grieving. I've never thought of guilt and relief meshing but that could be the key to grief recovery. The guilt and relief are caused by the same events. The guilt in having to place your hubby in a facility and not being able to care for him anymore, and the relief you feel in placing him in a facility and being free from the stress, anxiety and emotions of caring for him. You do deserve the freedom.

I think the relief and guilt will mesh when you finally accept the fact that you placed him to get the best care and eventually accept his inevitable death. They will mesh when your days return to a more normal life. Don't get me wrong, this doesn't happen overnite. Return to normal can be a long and tedious process.

I'm so pleased that he is in a careing facility and that you are finally allowed to see him if only thru the glass. For his grandsons to better remember him, create and album of pictures for them or maybe write what you recall of his biography. They could even be Christmas presents.

It's so hard and emotionally draining but be assured you are doing the right thing and the days will get better. And remember, although you will someday be separated, love never dies.

You may want to read the book "Getting to the Other Side of Grief- Overcoming the Loss of a Spouse".

I am glad you feel the relief. You SHOULD feel relief. We should even be allowed to feel relief when our loved one dies before descending still further down this awful slide of loss after loss.
I am glad you recognize you have a right to freedom and a life.
What you describe as "guilt" I call another G word, which is grief. You are grieving. You are not a felon who has done evil with malice aforethought and delight in the pain you cause. You are a human being who cannot fix everything, cannot make everything perfect. You aren't a Saint. I like to say sainthood is a pretty bad job description overall because we load them up full of shot arrows, kill them, then make them listen to us for eternity in the hope they will fix everything for us. You are a human being who has limitations, who can't fix everything, and who is now grieving THAT fact, as long as grieving what has had to come.
As to the young and the "memories " they want to make. Bless their hearts, but they haven't yet a clue about life. It's OK. It is where it should be in the passages. They are full of idealism, and the belief that everything has a fix.
I sometimes think we stay in guilt in order not to have to move to grief just because we need a "reason" and need a thought that "it might have been fixed". It is so hard to come to the finality of hopelessness and loss. But eventually we have to make that journey.

I can't remember the name of it (sorry), but there is a book by a woman who was a caregiver for her husband for years and when he died, she described the same kind of feelings you have. For example, she describes rushing home from somewhere, suddenly realizing she didn't have to do that or worry about that any longer, feeling relief, and then feeling guilty for feeling relieved. I'm sure this is the experience of most people.

When my dad died, I immediately felt guilty for not visiting him more often in the assisted living facility, but at the same time, I was glad to not have to go there any more. When we did go, my dad would just watch old westerns and we would have to sit there and do nothing but watch with him. Also, I felt guilty for not taking him to my house or out places, but in his situation, it would have been impossible. So, yes, we all have those feelings, and you are not being selfish.