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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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,
Helpful Answer (17)
Reply to Fred3202
Lizhappens May 11, 2023
My heart goes out to you gentlemen. God bless you for staying next to your wives.
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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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Reply to Grandma1954

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 come and sit with her for her last hours. This was a blessing for him, as he was 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 you, you are in my prayers.
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Reply to ClaraKate

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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Reply to NeedHelpWithMom

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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Reply to southiebella
MeDolly May 11, 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!
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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Reply to Ohwow323
bkoropchak123 May 11, 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.
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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Reply to JustDucky00

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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Reply to Donttestme

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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Reply to janicemeyer18

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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Reply to Sharovd

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