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I have been reading a lot of the caregiving posts online this morning, but I've not seen much about what you do when it's not your elderly parents but your spouse who is aging. My husband is 67 years old and retired. I am 62 and still working full time. My husband's health has had its ups and downs for the past 15 years. However, over this past year it has become progressively worse. He was hospitalized two times in April and now has home health services. The doctor, visiting nurse, and home health care nurse all said that he has to go into assisted living as soon as possible. We live in a big, beautiful home that has stairs and is full of stuff. Because my husband can no longer make decisions or help me, I have to juggle my full time and stressful job with moving him, getting the house ready for sale, and getting rid of the stuff we won't need anymore once I find a one level home for us. The housing market in our city is pretty good right now, but come fall, it will tank. The one level home isn't available yet. It might be before our home sells, but I can't sell our home before we have the one level home (it's in a retirement center). We have four cars, so I also have to sell two of them. We also had rental properties, which I also need to sell.


There's a lot to do, and I'm overwhelmed. I have been crying on and off for a couple of weeks. I have been waking up at 2:30 in the morning now for a couple of days. I just read something about dementia and the long goodbye, so I just started crying again. My husband has a variety of health problems, including a mood disorder, Parkinson's, NPH, and colitis. I can't do nothing. That's why I'm in the pickle I'm in now.


Three years ago, my husband got very sick and was in the hospital for 2 weeks and a nursing home for a month. After he came home, I told him that we needed to downsize and move to a home with only one level. Well, you can imagine. He said, "We're not moving. You'll have to take me out of this house feet first!" So we stayed, he got worse, and now we have to move.


I've been changing my husband's urine collection bags morning and night, cleaning up messes (both bowel and bladder), helping him dress and put in his hearing aids, tying his shoes, picking him up when he falls, managing his many medications, and trying so hard to keep his schedule on track. Even with the hearing aids, he has trouble hearing me sometimes. When I say something and he doesn't answer me, I presume he hasn't heard me. So I repeat what I said, a bit louder. Often, he snaps at me, "I heard you! Give me a chance to answer!" He isn't violent, but he gets angry and impatient with me.


Is anyone out there going through this with a spouse. Any advice? "War stories"? I certainly can't be the only one out there?

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Hi AmyKathleen,

I'm not a spouse but there are caregiving spouses on the site. I hope they stop by and share their experiences with you.

Your post touched me because you said you are working full-time and yet you are still caring for your husband. All the things you mentioned, the collection bag, cleaning up messes, putting in the hearing aids, tying his shoes, picking him up when he falls, managing his meds, etc. make me concerned for you. You have a lot on your plate. I don't know how much in-home help you have but please be careful not to get yourself into more trouble by injuring yourself or getting sick. The crying and the worrying will further irritate your health although I would be doing the same thing in your shoes.

I think your husband snaps at you because he's angry at himself for being in this situation (although his declining health is not his fault) and because he's very, very aware of the help he now needs and depends upon. But doing all you do for him and then being snapped at can be hurtful.

I wish you well and hope you get a lot of responses from other spouses out there.
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I recently got in home help for a few hours a day. Right now we have visiting nurses coming into the house, too. But they will end soon. The plan right now is to get my husband into assisted living. There is a studio available at the retirement center where I'm trying to get a home. Once he's in assisted living, that will free me up to get the house in order. I probably have 2 more weeks before assisted living can happen, though. For now, I'm hanging on by my toenails. And I probably need a pedicure.
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Treat yourself to a pedicure!! :)
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I have recently been through putting a house on the market For Sale, my parents house. Not an easy task to downsize. More power to you. I couldn't get my parents out of that 3 story house with a team of wild horses, it took a medical crises to get the job done. So be it spouse or parents, we do share a lot of equal issues.

Just a thought regarding 2 of the cars.... I found donating the cars was so very simple and it would make a good tax write off... unless the cars are newer and you rather sell them... CarMax will buy a vehicle if it is under a certain age, if you don't want buyers coming to your door.
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Oh, Amy, I just thought of one of our bloggers on Aging Care, her name is Marlis Powers and she has been dealing with the care of her hubby, Charlie. She has a lot of good postings that you might be able to relate to. https://www.agingcare.com/Blogger/Marlis-Powers and click on "Comments" to read what others here have answered.
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Hi Amy. Yes, there are some of us who can certainly empathize with you. My husband is 19 yrs. older than I am. He will be 89 this year. Amazing as it sounds, his health was good until about two years ago, then it seemed that either everything started happening or I finally got him to go to doctors and they found things that were already there. We moved from my townhouse about 20 years ago, when we began seeing each other, because it was a two-level; and, his knees were giving him problems. Rather than sell the townhouse, though, we kept it and rent it. That was a good decision. It is an extra source of income and it offers me choices of where I want to live if hubby passes away before I do. The problem I wasn't counting on is that I have bone-on-bone osteoarthritis in both knees. I am overweight, which makes it difficult to exercise and burn calories; so, I have gained even more weight. I need a knee replacement, but I worry about being in rehab and leaving hubby by himself and I guess I am trying to postpone it as long as I can. I am in constant pain, but we complement each other. He is able to walk and likes to cook, but he can't drive. So, I drive us to the grocery store and stay in the car while he does our shopping. We can't do this forever, though; although we seem to be doing pretty well!
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As a previous poster said, you should be concerned about your own health as well as hubby's. Being overwhelmed, waking in the middle of the night, and crying are all signs of depression, With all you have on your mind, I wouldn't be at all surprised. I think a doctor's appointment for yourself should be first on your agenda. You can't cope with your husband's health and move to assisted living if your health is in jeopardy. When we discovered all that was wrong with my hubby a couple of years ago, I thought he was dying or would be soon. I felt like you are now. It was appointments, lab tests, prescriptions... With his limited vision, he couldn't keep up with any of that. Trying to coordinate them with my appointments, involvement in a fraternal organization, and an attempt to keep the house clean and laundry done was pretty overwhelming for me, too. Being overwhelmed won't get anything done any better or sooner, so just try to take things one at a time. Maybe a file folder for each of the things you have going, either written or electronic. Only open one before going to another. Keep records of EVERYTHING! Understand that your hubby's grumpiness is his anger and frustration at himself, not at you personally. My hubby has hearing problems, but will not admit it. So, when he demands I speak up, I either say I'll tell him after he turns the TV down or that it wasn't that important...and I stay busy with something else. I used to take the angry tone of his voice or what sounded like shouting to me as lashing out at me. I have learned that it has nothing to do with me. My heart is breaking for you. You said you are reading about dementia and the long goodbye, and there will be a day you will look at him and think to yourself that you have lost the real "him." We can't change what life gives to us, but we can learn to look at life from a healthy perspective. Please stay in touch and let us know how things are going with you. There are some people here whose spouses have had some of the same diseases your hubby has, and I know they can give you some excellent coping advice. Remember, though, make your doctor's appointment first. Best wishes. Chari
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Good morning, friends. My husband is doing a bit better this week. Having in home care helps so much. It's not enough, though, to keep us in our own home. Assisted living remains the best short-term plan for my husband. I will live in our home until I can get it sold and obtain a one level residence. I can say that there is an outpouring of love and support from many of our friends. I have slept better, too, for the past couple of nights. I've had to take time yesterday and the day before to take him to multiple medical appointments. On Tuesday, I fell asleep in a chair while he was getting an EEG. Twenty minute nap! Then yesterday, I fell asleep for about ten minutes in the waiting room for his pulmonary exam.

Today I'm attending a conference that the local Alzheimers association is putting on. When I swung by their office to drop off a check for the conference, the lady in the office was someone whom I've seen and met at several of our Bach festival concerts. She recognized me and we chatted for a few minutes.

We also saw our neurosurgeon yesterday. My husband has NPH and a shunt in his brain. The doctor said that his symptoms are probably more related to his Parkinsons rather than the NPH. That was a real blow. I was hoping that an adjustment of the valve (which controls how much fluid is drawn off the brain) would reverse the cognitive impairment some. But we're looking at more of a chronic situation.

So last night was the final concert for the women's singing group that I'm in. My husband came, which he hasn't always done. The women in my group asked me if my husband were a lot older than I. He is 67 and I'm 62. That's only 5 years. But he looks more like 80 now. I have had to face the fact that he may not have too many years left.

So now I'm waiting for the assisted living facility to contact us for an evaluation of my husband's level of care. Then we pay some money and get a move-in date. Tonight I'm meeting with a friend, who puts in granite and quartz countertops, so I can start the remodel process.

This morning I read that a famous actor is moving to a town not far from ours. Here's hoping that he or one of his cronies falls in love with our home and buys it! That would be sweet.
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Does anybody have any ideas on how to deal with hoarding? We need to move to a retirement center, and my husband has finally agreed, but won't give up his collection of high school yearbooks, his mother's papers and his huge stamp collection,etc. He is 83
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AmyKathleen - this is a minor point but one with potentially big consequences- you mentioned keeping two cars - I'm hope you're not considering letting your husband continue to drive. Now, as you are making a big change in how the two of you are living would be a good time to stop his driving. So often this is a major issue and takes a lot of time and effort to accomplish- do it sooner rather than later - before your husband is a hazard to himself and others. You seem to be smart and organized- recognizing what you need to be doing for the next stage of your lives together- don't forget to give yourself a pat on the back - often. Things may get worse before they get better - come here often for advice and support - it really is a wonderful site full of smart, caring people who can help lighten your load a bit.
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My husband's doctor told him not to drive anymore. Even though my husband doesn't always do what I suggest (or tell him to do), he will follow doctor's orders. So the small SUV is for us (practical car). The red convertible is for me.
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AmyKathleen, I admire the way you are handling thing. You definitely deserve your red convertible. (I'm going to be singing "Little Red Corvette" the rest of the night now and feeling happy. :-)
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AmyKathleen - good to hear that your hubby's driving isn't an issue- at least he's listening to someone on that one - so many seniors don't. I love that you've got your red convertible to tool around in. I've got the cutest little cream colored VW bug convertible- don't you just love driving with the top down on a sunny summers day? I don't know about you, but for a little while it makes me feel like I'm free and without a care in the world !
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JaneA1, I think you'll get more responses if you start your own post. People who know a lot about hoarding may not be reading this thread.
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It is different with a husband, at least for a bee-atch like me. He never wanted to spend time with me, but now he won't let me leave the room! I'm "just a girl," as we joke, and so he doesn't take my word for anything. My love for my daddy was much less ambivalent.

On the other hand, he has gotten sweeter and a little more grateful as he progressed. A friend who went thru this told me, "Never let him feel like a failure." That's not always possible, but it's real good advice.
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Oh my, you do have serious problems- everything I've read says "take care of yourself- it won't help him if you break down and get sick." Have you gone to any caregiver support groups? They're helpful, and you might call Hospice for help, too.
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AmyKathleen, I think you are doing much better than when you first posted your question. That makes us all happy. I can see you running your errands in your red convertible! I was wondering if you have had an appointment for a checkup and a few problems you were having yet? Don't get caught up in the busy-ness and forget about you.
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Amykathleen, I agree with Rainmom on the car situation. Lack of parking places would be a good excuse to downsize to one car. It doesn't sound to me like he should be driving.
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OOPs. Sorry I didn't read all the posts before posting about number of vehicles. Good for you. If you feel about your little red car like I feel about mine, you need it for the good of your soul. You go girl!!.
Do you have any annual or family leave at work that you could use? Would it help to put your stuff in storage until you have time to sort through it?
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Dear AmyKathleen, I am in the same situation as you. My husband has FTD (frontal temporal dementia) and was diagnosed in 2014 although he started with memory changes in 2013. I hope that you have your POA, trust, etc paper work done. I am a RN so the care he is needing now is hard but I know what to do. I also am working yet and have a caregiver for him the hrs I am not home. I started to sell things when we got the diagnosis and knew he would not get any better. I have a lot more things to get rid of yet. I can not sell the house yet as it would be very disruptive for him and I have the house set up with his care needs. ( I have plastic runners over the carpet as he vomited and had urine on the new carpet, so this protects it better. He is drooling now.) He has really gotten worse since 2013. He can no longer talk, doesn't understand what is spoken to him, needs help eating, is in diapers, etc. I take it a day at a time. When he is unable to do stairs I think I will move the furniture and get a hospital bed for him, like in the family room so he can look at TV. I may have to get a caregiver for 24 hrs. I worry about finances too and do not want him to go into a nursing home where the care is not very good usually. I do not have family close to me. Actually having a job is a good relief for me. Some days are hard to work, but I know I need to get out. Get as much information as you can on caregivers, financial matters,etc as that lets you make good decisions. I am 62 and my husband is 61. I have gone through bad behaviors with him also, this normally is not my husband. I am hoping I can stay put until after he passes on, then make a move to a smaller home. God bless you and hang in there.
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Amy you are not alone. I care for my 62 year old husband. I am only 60 and way to young to consider SSI so I must work. We care for 2 13 year old grandchildren so assisted living is not an option. My husband has a suprapubic cath and the last 2 months wears depends. Both need to be changed and he needs to be cleaned up. They say I make too much money for assistance but can't keep up with all the bills I have. It makes no sense. I have no help and have to do everything my self. Now he thinks this persons name is written on everything, so he is tearing up everything and throwing it away. I now have to check the trash cans 2 or 3 times a day. I just keep plugging away. What else can I do. Enjoy the help your getting now and take the advise of getting that pedicure.
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I feel that those of us spouses fall between the cracks in the system. I have been encouraged by the Eldercare attorney to get a divorce to protect me from total financial loss, except that you can not have your house taken away, car and each state has a $$$ amount that you can keep, which to todays standards is nothing, especially when we are younger. Talking with a financial planner so far for me has not been really helpful as they want you to invest with them, I have no one to help me decide what is right but the financial advisor who we invest with, has been giving some advise.
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Thank you Cathy. I have come to realize that is what I have to do. Its hard after 37 years it has to come to that. Good luck with your situation.
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Isn't is sad that our laws are set up in a way to punish the mate if a person is on Medicaid. My mom was on it for 15 days post hospital care. Since my dad had passed away, everything was pretty simple...until they discovered that mom was on my checking/savings account! Before my hubby came along, I just wanted a second person on my accounts in case of my death, and I hadn't changed it. When they questioned me about the account and I explained, the question was, "Can she write checks on your account?" Well, yes, but she doesn't. So, she has access to this account? Well, yes, but she never uses it. I could just see my checking and savings account being turned into the government, leaving ME with no money! I had to get all kinds of documentation from my bank and jump through hoops to satisfy them that it was my personal money and that my mom did not use it. It's a shame that the laws lend toward a divorce in order for you to retain your share of what the two of you have worked for as a couple. I am so sorry.
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Chari, change your account to Pay on Death rather than a joint account. It is designed to serve the purpose you described.
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I see. Then, that relieves the second person of any authority to withdraw money from the account until I die, so it is not considered an "asset" of the second person. Thank you, Vegaslady!
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Yes, that's exactly right, Chari. When the owner of the account dies the person who is "paid on death", goes to bank with ID and the owner's death certificate to get tge money.
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