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Because of her blood cancer, multiple myeloma I am doing almost everything that she used to do so well in keeping our home, cooking, etc. The past several mornings she has gotten up and says she wants to go home to be with her family. We are in our home now and I am her husband. Have I taken too much away from her, that is, those activities that she used to do?

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You are doing great! My mom had MM and my sister had MM and both had dementia with it. Its their memory that is gone or going. You just need to remember don't argue, need to agree with them. Tell them we are going in a while or tomorrow. Tell them what they need to hear. Some may tell you to tell them the truth but that doesn't always work... I told mine what they wanted to hear and guess what everything was fine. What you need is not to argue because that will only frustrate you and them. MM is awful. The legions can break bones and can start growing out of their bones and make it very painful. Let her do what she can as long as it is safe. prayers
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bkoropchak123 May 2023
Kudos to the many responders on this difficult situation. When going thru this with my mom I found that not arguing with her reality worked beautifully. One day she worried that my deceased father wasn’t home from work yet. We spent the morning “calling” his office, providing possible explanations for his tardiness, etc. We turned it into an adventure rather than an argument.
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Often when a person with dementia says I want to go home they may not be talking a physical place.
They want to be in a time and place where they were well, felt safe.
Remind her that she is safe
Remind her that you love her
Remind her that you will take care of her.
don't argue. Be with her in her reality.
Ask her if she wants anything. This is a gentle way to redirect without making her comments seem trivial or unimportant.
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I am so sorry about your wife.

I see from your profile that you have been married over 60 years!

How are you holding up? Is this becoming a bit too much for you? Do you have any help with caring for your wife?

Please know that if you cannot physically or emotionally care for your wife at home any longer, it’s okay.

You will not be abandoning her if you find a nice facility for her to live out her remaining days. Don’t forget to look into hospice providers. They can help keep her comfortable towards the end of her life.

Wishing you peace as you continue on your caregiving journey.
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Sounds like your wife is manifesting the normal progression of dementia. It's not unusual at all for those who suffer from dementia to regress mentally back to when they were "at home" with their parents and/or siblings.

It was a sweet time in their memories and not at all filled with their current struggles, both physically and mentally.

When we were children we wanted our mother when we were hurt or upset, and dementia takes it full circle. Honestly, I think we always want our mothers when we are sad or anxious.

I know it's sad and difficult to bear as her husband. It's difficult to bear as a son or daughter as well. Our LO is slipping away inch-by-inch and it can be agonizing to watch.

My mother daily wants to go be with her parents....back to when she lived with them before marrying my dad. Her recollections of being married and having children are mostly gone now. She rarely if ever mentions my dad or my brother, who are both deceased. And most of the time she doesn't know that I'm her daughter.

But every morning without fail, she will ask me if I've talked with her mother.

Blessings to you for the loving care that you're providing to you wife.
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MeDolly May 2023
Southie, it is interesting, my step-mother doesn't know my name anymore, yet she recognizes my face, or at least that is what I feel. I go there to take her out for lunch or the doctor and she just goes with me. Of course, I have to check her out with the home.

When her husband died, she was most concerned about him not recognizing her, however he did, she never shed a tear when he died and never speaks of him, when I mention his name she has a blank look on her face, the memory of him is gone.

This is one scary disease it has tenacles that reach far and wide and affects everyone who comes in contact with it.

Your post was spot on!
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Sometime a UTI (urinary tract infection) can cause problems as well. It might be worth having checked out.

It made my mom delusional and she also has dementia.
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This is a letter I could have written. I'm having the exact same experience now with my wife of 69 years, who has been suffering with dementia for two years. Just recently, over the past three weeks to a month, she has been saying that she has to go home. She says that her mother will be mad at her. Even gives the address where she needs to go. The problem is that she has started to attempt to go out and bother neighbors about me not taking her home. I have had to take drastic measures, alarms and locks to prevent her from going out of the house, at all hours, and endangering herself. Up 'till this period there was no wandering problem, in fact she did not even want to go out of the house, and did not, for almost the whole two years. I'm afraid it's now time to consider a memory care facility, as much as it hurts me to have to do that, but I see no alternative. I've tried agreeing, changing the subject, promising to take her home (tomorrow), etc., without success. It's not that you, nor I, have taken anything away from our loved ones, it's this ugly disease that has taken their ability to live in reality. All the best to you, you are not alone, millions of us feel your pain,
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Lizhappens May 2023
My heart goes out to you gentlemen. God bless you for staying next to your wives.
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Your wife is mentally ill and she is going to say and do things that do not make any sense. Your job as her husband is to make sure she is safe and well cared for. If she is far enough along in the illness that she doesn't know her own home or husband, she is in no condition to "keep a home and cook you a meal".
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My uncle had these same issues with my aunt. He hired a caregiver to come into the house and help him during the day. My aunt eventually did not recognize my uncle to the point where she was frightened at night to find him in the house with her, and would not allow him to care for her. It just became too much, even with the daily caregiver, and he placed her in a wonderful facility where they had both previously agreed they would like to be if they became unable to care for themselves. My uncle remained at home when my aunt moved into the facility, since she required memory care for level of care, and he wouldn't have been able to room with her anyway. He did visit, but eventually she became accustomed to the facility and the staff, and would refuse to visit him, even in the sitting area or outdoors. So he simply called or stopped by to see her, so as not to upset her. It was much more difficult on him than on her. This was complicated by covid visiting policies. My uncle coped well by spending time with his friends playing golf and joining the local YMCA, and traveling to visit friends and family. My aunt eventually passed away, and he was able.to come and sit with her for her last hours. This was a blessing for him, as he was able.to say goodbye, and also she was resting peacefully and was not disturbed by the visit. I am sharing this with you as my uncle has coped well emotionally, knowing that he did everything possible to keep my aunt safe, comfortable, and happy. I hope this information is helpful.to you, you are in my prayers.
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No, you didn't take too much away. It's the diseases she has. My dad had colon cancer (that returned with a vengeance) and dementia. His oncologist gave him 6 months to live. He lived in Assisted Living and had a caregiver 24 hours. I also had in-home hospice set up for him. He did well for a while until the cancer started taking over. He started talking nonsense words like apple pipe and wanted to go home. He kept trying to find his car that he no longer had. He didn't know where home was. I think he just wanted to be in a place in his mind that felt like home. He did mention his childhood home often. It got really bad, he tried to leave the facility and the caregivers where terrified. He was in a lot of pain but couldn't communicate it properly. The morphine wouldn't even help anymore. I had to move him to a hospice facility and the first night there he tried to escape. He got out and security was involved. They said that never happened before. He no longer recognized anyone and still said he wanted to go home. He asked for his wife ( my stepmom) who died a year before. Hospice was able to manage his pain and he found peace 4 days later when he passed.

It's not you, it the disease(s)!
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God bless you, Sir.
Please consider the following:
1. Inform her PCP about these observed behaviors and changes, right away. Your wife's disease process may have declined further...
2. Contact a local hospice of your choice, speak with the clinical supervisor and, share your wife's illness, present observed status and your situation; hospice may be a consideration for now and they will gladly help you communicate with the PCP and get an order to assess your wife for appropriateness for admit to hospice care( at home or perhaps in a facility). The broad scope of discipline support from hospice may help you navigate the care needed now and later. They will also help support YOU.!
3. You say that your wife " does not know you as her husband"......this is often a sign of disease progression;

4. Patients saying they " want to go home to family" ( or mother or father etc) is often a sign of disease progression and, honestly it often may indicate that they are sending end of life near. Perhaps this is not the case or may be with your wife. Either way, she should be assessed by her PCP and hospice at your preference for her " level of care needs" now so that both she and YOU, can be best supported going forward.

5. Be sure that you are visited regularly by your faith leader of choice or a community chaplain for your emotional, spiritual and grief support.

Get help !
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So sorry. I know how devastating this is. You haven’t taken away anything from her. Dementia has.

My spouse often asks to “go home”. Think about it…home is an”idea”. Home means many different places throughout your life. Which home does she want? Or is it a conglomeration of many of her “homes”? Even if you could take her to one of her past homes…she wouldn’t recognize it and still want to go “home.”

I just take it as they need a little extra love hen they ask about home. They feel they are in an unfamiliar place, therefore I try to reassure them and in turn distract then with something they like or even just a hug and a kiss or some hand holding. Try some music or petting the dog or cat. Go for a short walk.

I know you are working yourself silly taking care of her. That’s the life of a caregiver. Love her and be patient with her. For yourself, join a support group - even an online one…it will help you immensely. Remember take care of your self because you can’t care for her when you’re not well.
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I think many here have said it better than I, but when I was caring for the Mrs. she would say that too, and we would either kind of ignore it, or reassure her, or show her pictures, change the subject, as I’m sure you have.

And of course, no, you didn’t take anything from her it was the disease. However, if she can and wants to help in the kitchen maybe you can find something safe for her to do so she feels useful.
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lealonnie1 avatar
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lealonnie1 May 2023
Love how you say "And of course, no, you didn’t take anything from her it was the disease." Amen.
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Contact Teepa Snow.
Call and/or look at her website.
She is one of the country's leading experts on dementia and can guide you on how to interact in the most humane ways possible. And, at the same time, take care of yourself.

My heart goes out to you. I can't imagine how heartbreaking it must feel like when a spouse does not recognize you. I DO believe a part of her inside knows who you are and the brain (changes are) is getting in the way.

While photos and words of comfort may help, if it were me, I likely would 'agree with her' to offer her comfort. "Yes, we will take you home to be with your family." She likely may not understand these words - although one never knows. She might. Seems to me that agreeing with her is offering her the most comfort possible. Logic and common sense generally no longer matter.

Perhaps reassure her as much as you can with touch (hold her hand), Gently stroke her hair. Whatever touch that will support her to feel connected (to you).

Gena / Touch Matters
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The issue of age-related dementia has different dimensions in other societies. In some societies it is probably taken as one potential aspect of aging. I had friends from a culture in a certain region of Europe: The husband had immigrated to the U.S. after WW2. His wife remained in Europe and came to the U.S. two decades later. They had been separated for over two decades due to the circumstances of the aftermath of WW2. When the wife arrived in the middle of the 1960's, the husband had already dementia. The relatives accomodated the wife in the bedroom of the husband. The surprised husband then told his relatives: "They put a strange women into my bedroom !" The amused relatives then made a suggestion meant to be good-humored.
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ventingisback May 2023
I don't understand your point. And anyway, how does your answer help OP?
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I have been through this, as well as have most of those who have commented here. My husband had Parkinsonism with dementia, which is basically Lewy Body Dementia. When he first started wanting to "go home", I was able to distract him or tell him we would go after dinner. It kept getting worse and nothing helped. Finally, I just said "fine, let's go". We'd get into the car and I would tell him to tell me where to go. Sometimes, as soon as I backed out of the garage, he would point to our house and say, " there it is" and I would pull back into the garage and he would fine until the next day. It got progressively worse. If your wife has Alzheimer's, her mind is probably going backwards. In time, she might not recognize you because in her memory, you might be 30 years old and look completely different. Sometimes talking on the phone with him helped because he couldn't see my face and would recognize my voice.

Has your wife been evaluated by a Neurologist? If not, I would start there so that you know what you are up against and what to expect with the dementia. You might also want to consider getting some household help. Cleaning people/companies are a lot cheaper than in home health care and could give you a little relief. If you would like to ask me any questions, you can ask me here or private message me. Take care of yourself. (Put your oxygen mask on first.)
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I don't suspect you can give back to her those activities that she use to do.

My husband did carpentry and fixed anything, so busy is his middle name. Fifteen years into his dementia I give him small things to fold. He can water plants and sometimes shoes. I use him to taste test as I prepare meals and I ask him if ingredients are good.

When he asks me "am I driving?" I tell him it's my week to drive, last week he drove (I'm fibbing), so next week it'll be his turn again.

Can your Mrs. spread mayo on a slice of bread? Can she tear lettuce? Can she fold napkins?

When she asks to go home say that that was the day's plan and ask her what she likes best about home and how fun it would be to see if the garden needs pruning and weeding.

Put some easy listening music on, take her in your arms, sway with her and tell her she is home for you even if you were with her on the moon.

I do this. My husband and I dance in the kitchen and I whisper something lovely by his ear and he is elevated. I could be Barney Fife for all he knows but he is made happy.
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Kaybostonwyo: God bless you, sir and keep you in HIS right hand. If your DW (Dear Wife) can perform folding of hand towels or tearing of lettuce (as others have suggested), have her do so ONLY if she is able at that moment in time. Also, please know that you're doing a stellar job thus far and if care extends further than your physicality, it's okay to admit that you require help.
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I had a friend whose wife developed Alzheimer’s 3 years before my wife. I learned from watching them. First “home” is not a particular place. It is “not here”. Second try to build today memories. Mh wife knows I am the man who loves her and is going to take care of her. On the rare occasions where she remembers my name or that I am her husband I am overjoyed but in most cases she knows I am there for her. When she wants to “go home” gently change the subject. That being said every person is different. Only correct misstatements when it is necessary. If it’s not a matter of safety just let it go.
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It's possible you did take on more tasks because you felt bad about her health. We all want to help aged or disabled and sometimes we create even more disability by doing things they may be able to do. Perhaps not as well or fast as they used to, but could still do it.

Are there any tasks you could get her involved in? Folding towels, socks, other clothes? Set the table? Any little thing you can think of. Don't worry so much about quality of the work.

Practice deferring her 'going home' talks to anything else. You might want to ask her where her home is or what it looks like. She may enlighten you as to where her memory is right now. Could be a past home both of you shared or it could be a home where she lived as a child - you wouldn't have been there, so her memory may no longer include the life you had together. It's painful to you, but keep telling yourself that the broken brain cannot be fixed, so no point in trying to get her to understand reality or the here and now. Has she ever hinted at who she thinks you are? Or maybe she does recognize you, but your home is becoming a fading memory.

If you can afford any help at all, I urge you to do it. Maybe a good house cleaning once a week to ease your own workload. If you can still get her out of the house, take a drive and stop for a burger. Then sit in the car to eat - I call it parking lot picnics. Bless you on this part of the journey
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