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I try to visit him every other day and I feel he is well cared for. He asks to come home and I tell him that he can when he's better. I don't think he will ever come home. I just feel so discouraged and lost. It's very difficult to have to worry about everything, bills, house upkeep etc. Our daughter calls when she has time and doesn't understand all that's involved and she does live far away from me.
Are there any words of wisdom or encouragement to help? I do volunteer at the Senior Center 2 times a week, I thought that might help seeing plenty of people but it doesn't. I would appreciate any thoughts?

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I gather you had a wonderful, close, loving relationship and if so, you were blessed - many of us never have had that chance. So be grateful you had this at least part of the marriage - it hurts to lose that, I know but things happen. Try to live your life to the absolute fullest and do things YOU love to do and that make you happy. Don't you lie down and die because your spouse is no longer what once was. Go visit him, etc. and be glad he is cared for. Not all of us have that luxury.
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As for worrying about, bills, car, house, upkeep, etc, yes, those are your responsibility now. Find help for things that are too much for you. You may have to pay more for home and car maintenance than you had to if your husband was doing those chores, but you can do it. Ask friends and neighbors for references for maintenance services; you will begin to collect your own "army" of helpers. You can even hire someone to come in and take care of bills and paperwork.

Take things one a time. Thinking of everything you need at once is overwhelming. Are your bills up to date? Can you manage your paper work? is someone mowing the lawn? Is anything on the house broken or leaking? Have you made an appointment for your fall furnace check?

Take a breath. Enjoy the time you are visiting your husband and be thankful he is being well taken care of. When he asks to come home, tell him you love him and would love to have him come home, but right now he still needs to be here (in the facility) where the nurse is.
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You are grieving for the lost of your husband at home with you. Although you have not said so, you are perhaps also grieving for his expected passing. I have been on both sides of these grief situations. My LO would frequently have to go to hospital for different reasons and different length of times.. I would miss my LO so much, I would grieve. Now, that my LO has passed I grieve more. It is much harder than the previous grief because now, no matter what anyone says or does, my LO is not here and is not coming back. I am now more or less alone. It is a much harder adjustment.

Your LO is still here. Every time you feel sorrow for missing him at home, you can call the MC facility or you can go there to be with him, even if it is just to check up on him while he is sleeping. Maybe get a phone app camera so you can see him in his room. Go have breakfast with him. Leave and comeback later. Life is short, make the most of the time you still have with your husband.
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Roofie: Imho, what you've experienced is a major life change and it's quite natural to be overwhelmed by these dynamics. Please continue in volunteerism. Get as much help as you require, e.g. meal delivery such as Meals on Wheels and other meal delivery services, housecleaning assistance, et al.
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I have read all the replies to your post and can honestly say I understand how you feel. My husband has Parkinson's and progressing dementia. I recently (6 weeks ago) transitioned him to MC after he declined after a week hospitalization for sepsis then 5 weeks of rehab. I visit him usually 5 out of 7 days a week and have a part time caregiver for a few hours 3 days (the facility has been short staffed). I have been filled with guilt and sadness because I miss him at home and would have preferred to care for him here but the stress of caring for him, and taking care of a home, finances and two pups after his decline reached a point I could no longer handle. I KNOW now he is in the best place, and he actually has adjusted better than I have (he rarely says he wants to go home). I am starting to feel like he is just at his other "home", comfortable, safe and treated with dignity and respect. I thought, and thought, and thought, about making this decision, and the professionals, family and friends agreed it was the best for both of us. I highly recommend you don't listen to those that say to bring him home. When it becomes a 24 hour job, with or without caregivers, the daily stress is overwhelming. As many people have said to me - you have to take care of yourself or you're no good for your spouse/parent/child. I got a pedicure, a massage, and try to walk my dogs every day. Wishing you the best in the journey.
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Some readers are recommending that you bring your husband back home, and that would be wonderful if you could restore your lives together somewhat like they were before, and if you can put together most or all the care resources that is currently provided by the MC facility at home. As you have stated, your husband has been there for over a year. You must have had a good reason(s) to make that choice at that time. You obviously did your due diligence for that decision and you daughter supported it. If you are going to change your mind now, please do the same due diligence to ensure it is a good decision for both of you.
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Wow..so many conflicting answers! I am researching places for my husband per our last Drs visit. The problem is not being able to watch him during the day but the safety issue of not being able later to lift him or do the things that will be necessary for him. My concern is night time as he progresses and I do not want someone living in my house 24/7. I have no children to help but I will make it thru this with God's help. My husband is only 68 and still physically fit with excellent health EXCEPT Early Alzheimer's. I am praying and hope I will know when the time is right for both of us to make this change. This is not a parent, friend or sibling but my spouse. I see he feels belittled when I try to help and it only makes him more confused and upset with me. A man wants to be a man as long as possible and I do not feel he wants his wife having to clean his personal parts. That is my thought after I have watched him the last 8 yrs progress....
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Ricky6 Sep 2021
@phoward51: I agree with much that you have said here. I too did not want outsiders to be in my home where I took care of my LO. I also thought many times that I needed to look for a care facility for my LO. However, I did keep my LO with dementia at home, and I procured the necessary Durable Medical Equipment (like patient lifts, wheelchair, toilet commode, diapers, etc.) to do so. Personal cleaning, dressing, feeding, and later skin wound treatment were daily chores. Not everyone is cut out for caregiver responsibilities and duties. It is hard…..
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I understand, it is so very hard and lonely. When he asks you to take him home, say something like, that would be so nice and change the topic ( redirect). You made the decision to place him where he receives the kind of care you felt he needs, don't second guess that choice. ( For anyone to guilt you into taking him home is cruel and not what a support group should be doing in my opinion. Everyone has their personal level of being a caregiver - not everyone is able to sacrifice everything for a loved one as much as they want too) As sad as it sounds, you might want to start moving forward with your life without him, dementia only gets worse over time, he may reach the point where he does not recognize you. You will want a support network in place because it is heartbreaking. I pray for anyone on this long goodbye journey daily.
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You’ve experienced a huge life change and it’s natural to feel discouraged that things aren’t going to be the same anymore. You’re doing a good start by visiting your husband and volunteering. Don’t have the conversation with him anymore about coming home, it gets nowhere and only brings you both down. Change the subject immediately anytime it comes up. I hope you can find a support group for caregivers near your location, talking with those in similar situations can really help. I wish you both peace
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you don't give enough details. However, i think you should have him come back home. what's going to happen with u when things go down hill for you. u stated ur daughter lives afar. he was and is ur company. He could get better where there is LOVE. Those ppl do not love him like u do. Most ppl (people) go down hill when there no longer at home where they are use to being. no one, no one wants to be in those places. Everyone either wants to be home or go back to the state where they once grew up. think of yourself in that situation how would u feel. u have a home just get someone to come and u can still have me time. you can do it. Pray and call on our Lord and Savior. Eat Healthy you and him get exercise. if ur handy with the computer go to YouTube check out Dr. Klaper, Dr. Bernard and Plant Based Health.
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Daughterof1930 Sep 2021
This advice is both misguided and cruel. Dementia doesn’t get better, ever. It’s grossly unfair to attempt to guilt an already saddened spouse into doing the very thing that already proved to be too much. No one goes to memory care because it’s convenient, it’s a choice made in both the person with dementia and the caregivers best interests
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Im afraid it doesn't get better.
Why not let husband come back home and hire a Caregiver to help you out.

It really isn't any fun living in memory care and truth be told, they are all understaffed.

Your hubby would be happier living at home if that is at all possible.

If he's been in the Military, you could get up to 30 hrs a week free help.

Prayers
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Daughterof1930 Sep 2021
Oh Bevthesuperior, here we go again inflicting guilt onto a person who’s already sad and just looking for support. This lady’s husband is in memory care because the situation was too hard to handle in home
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The major thought I am getting is "change isn't easy." It really isn't and sometimes the changes can be painful when you compare what is the situation "now" to what it "used to be."

So instead of looking at the past with longing, start creating a present that is more peace-filled. Some folks find journaling helps to process their feelings. Some folks find creating a project board with pictures and/or phrases helps. Some find help discussing their feelings with a pastor or counsellor. Some find solace and centering in The Bible or other faith-based literature. Some find prayer helpful. Some find downsizing and organizing helpful to calm the chaos.

Usually a little of all those help me - especially since our military life had our family moving over 25 times in 30 years. I usually could name a few things I was happy to leave from wherever was our current home. I also took time to find several things to look forward to in our new assignment. It became a habit to look at our belongings every spring and purge whatever we hadn't used in the last year. I helped our children to find ways to keep connections with their friends - not always successful, but at least a worthy effort. Many times we found new experiences that became part of our day-to-day life. My guess is you will too.
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I understand completely and am exactly in the same place you are. My husband has been in memory care for just over a year now too. I posted recently about possibly bringing him back home (because I miss him so much) but have dismissed that idea thanks to all the wise answers I’ve gotten on this forum. I’m a young 66 year old and am not yet ready to downsize and move to a “senior” type apartment or such. I think I need to do more social things as well. Maybe find a new social circle…somehow my current circle seems to be insensitive and just not what I need in my life anymore. They just want business as usual and expect me to be the same I guess. To answer your question as to whether it gets better, I feel it waxes and wanes. It changes. There’s not a day that I don’t think about my husband and the good times we’ve had but I know he is getting good care. We are like love birds (all googled-eyed and smiles, hand holding etc) whenever I visit him. A nurse recently told me that the staff members strive to have a relationship like my husband and me. LOL. The love still shines through. Everyday I wake up I am thankful for another day and just ask for strength (mentally & physically) to make it through. One day at a time. We will get through this. Hugs to you.
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Daughterof1930 Sep 2021
Wise words
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Sometimes when you are alone you need to talk to somebody, anybody about anything. Check and see if your State has a Warm Line 800# to call for emotional support.

https://www.nami.org/NAMI/media/NAMI-Media/BlogImageArchive/2020/NAMI-National-HelpLine-WarmLine-Directory-3-11-20.pdf

Also some people have suggested that you get part time job, volunteer, look into down sizing and move, and/or join a support group. However, I know you love husband dearly and if you were to undertake some of these suggestions it would take away the precious time you can have with your husband. Yes, it’s a big adjustment and it HURTS, but he is still here with you. Go see him everyday, make it like a holiday/vacation event. You can still cook for him and bring him his favorite treats. Talk about subjects you always gossiped about. Bring the dog along. Bring little gifts. Participate with him in the activities at the MC facility. Bring the newspaper and read it to him. Be creative!
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When people have been married for a long time, they become emotionally dependent on each other. If they own a home, they usually both pitch in to help with managing the household (bills, grass cutting, etc.)

When a loved one is in Memory Care, it's not that different from being widowed - because the spouse is not "there" for us, physically or emotionally.

As others have suggested, you might consider downsizing and moving into a senior apartment where you would not have so much upkeep.

You might also need more social outlets than just volunteering at the Senior Center. You might even consider a part-time job, as many places are desperate for workers right now.
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Yesterday, when I visited my husband in Memory Care, we were sitting on the bed, looking at cute Facebook pictures of our great granddaughter's first day of pre-school. He leaned toward me and said, "I'm so glad we're home together again." I realized then that to him, home was not a place, but when we were together. I left there feeling a little bit of peace instead of the constant heart-heaviness. I'm praying for you, Roofie, that God will provide you with small moments of peace in this awful world of spousal dementia.
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You are doing what I would suggest that you do.
It is difficult having your husband in the care of others.
Do you belong to a Support Group? Often Memory Care facilities will have Support Groups for family members. If they don't you might want to suggest that one get started. Support Groups can be of great help.
Do you have a pet? I can not imagine getting home and not having my 3 dogs waiting for me.
Stay strong, keep busy and know you have done what is best for both you and him.
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Roofie Sep 2021
Thank you for your support, and your suggestions. I do have a little dog and he does help with being alone. He makes me laugh and we all need a good laugh. Because of the virus there doesn't seem to be any groups that are meeting at this time. But, I'm hopeful there will be. I'm grateful that there is a place for him to be cared for because I know I couldn't take care of him.
God Bless you for your response, it helps to know I'm not alone. Roofie
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Sorry that your husband needs to be in memory care. It is a loss, most definitely. I bet a lot of what you are feeling is grief.

I agree with other poster that you should downsize. Either into senior living in a complex for over 55 with your own independent apartment OR into assisted living (some have independent living apartments and then you can transition into AL if and when it becomes necessary). Living by yourself in your home is A LOT.

I'm glad that you are volunteering. It sounds like you do need more than this. Do you have friends that you can call and set up lunch dates? Or cards? Or a walk? Something to get you out of the house and having some fun. Maybe join a gym and get some exercise which is good for helping you feel better.

Good luck!
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Roofie Sep 2021
Thank you for your support. I do have breakfast with a friend once a week and appreciate the company, it does help!
I have been thinking about living in an assisted community, I'm not sure.
I just don't want to make a wrong decision that I'll regret.
Thank you for taking the time to help me with all your suggestions. I appreciate you.
God Bless, Roofie
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I'm so sorry you're going through this.

I think one thing older people don't tend to expect is great upheaval in their lives prior BEFORE a spouse dies, but oftentimes that's exactly what happens. You have had a big change in your life just as your husband has, and it does take time to adapt to it, especially if you now have tasks to handle that you didn't have before.

The important thing, I think, is not to suffer in silence and to ask for help from your daughter rather than wait for her to find the time to call. I hope you're also having a social life, not just volunteering at the senior center. You need someone to commiserate with, and to swap stories of how to cope with these big changes.

My dad cared for my mother with dementia for four years before he died, and he'd have lost his mind if he wasn't able to go to his weekly Rotary Club meetings, to church, and even just out to the grocery stores to do his weekly rounds of sale shopping. I came up to visit once or twice a week, and he'd just talk and talk -- not complain -- but he needed the social interaction. It wasn't until I had to move in with my folks once my dad got sick did I truly realize how isolating his existence was. He had told me, "My world is getting smaller and smaller," and I really understood it then. However, he took it upon himself to expand his world as much as was feasible while caring for Mom, and I think he was as content as he could be in his situation.

My point is that you're going to have to go out on a bit of a limb yourself to find things to keep you content. The senior center work isn't enough, so add another activity in there as well. Try to go to lunch once a week, with a friend or even alone. Get a book on how to organize yourself and the household. There are books for late-blooming young adults on "adulting," and while it might seem a little patronizing to get one, you might find some good tips in one. I bought one for my 23-year-old son, and it has yet to work, :-) but you have a head start on some of that.

Good luck, and yes, it'll be better -- just different.
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Roofie Sep 2021
Thank you and I appreciate all your suggestions. I'm going to try and get out a little more. I find myself just being lazy and content to just hang around the house. I have a little dog to keep me company. I know I need more than that. I'm working on it, but, it's not easy!
God Bless you and your kind thoughts. Roofie
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It's never easy to deal with a loved one who's been diagnosed with dementia, but I'm sure you placed your DH in Memory Care because you were no longer able to care for him successfully at home. It's kind of a no-win situation, really, but you're better off dealing with bills and the upkeep of your home without ALSO having to deal with the 24/7 care and maintenance of a DH with dementia, right?

That said, why not think about downsizing and moving to a senior independent apartment one of these days? It's a lot easier on the pocketbook and there's no real upkeep to an apartment vs. a home. You'll likely make new friends and not have to rely on your daughter for socialization. There's nothing like developing a network of friends of your own to get you into a better frame of mind and new way of life!

And last but not least, you may want to think about getting some therapy to help you with this phase of your life. Someone to help you develop new coping strategies and give you ideas to encourage your own personal development is always a good idea.

Try to remember that DH is well cared for in a safe Memory Care ALF and while you feel lost and discouraged, you made a wise decision by placing him in such an environment. My mother lives in a Memory Care herself, and always talks about 'going home', but such a thing isn't possible. I feel like she's really talking about a place in TIME more than a brick & mortar building anyway, since she hasn't had a house since 2011. Keep in mind that with dementia, they say a lot of things that we shouldn't take personally or internalize, you know? It's hard, I know.....I always leave a visit with her feeling despondent myself. Dementia has a way of leaving everyone feeling blue, doesn't it?

Wishing you the best of luck with everything you have on your plate right now. Sending you a hug and a prayer for peace, too.
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Roofie Sep 2021
Your have a lot on your plate also? Yes, I agree Dementia has a way of leaving you feeling blue and helpless. My visits with my husband feel so sad and hopeless. The one good thing is that I know he is cared for by people who know what to do 24/7.
Thank you and God Bless for your help, I appreciate you so much.
Sending hugs & prayers to you too. Roofie
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