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We've talked about my husband and I moving in with Mom and Dad for years. We all four agree that it's time and I know I'm making the right decision. My husband is spending most of his time on the east coast getting our house ready to sell or rent. I'm planning to stay with Mom and Dad four weeks at a time with one or two weeks at home in between. Dad has been Mom's full-time caregiver for years but he's starting to feel overwhelmed. After three days I completely understand why. I feel so lonely and I worry that my own health isn't up to the job. I think my most important job is just keeping them company while my mom dies, but I'd like to do it without sacrificing my own mental health. How can I make some connections in a totally new community without leaving them alone for large amounts of time?

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I cared for my mom for five years in my home. I can say that the one phrase that I often told myself was, "slow down." Mom had dementia with Lewy Bodies and took no medicine, so I had to be particularly aware of her moods, her up and down physical abilities (better in the afternoon, worse at night), as well as her eating habits. I learned that I needed to take my time doing everything: transferring her to/from chairs, walking down the stairs myself (I used to run), and I learned that there were a few standards that I had to relax in order to remain sane and healthy myself. For example, I let her sleep in her sweat clothes (then washed and dressed her the next morning), I didn't bathe her every day, I didn't worry so much about keeping her busy all the time - often she just liked to watch me, then later would say to the kids that "we" did the laundry, made chicken parm for them, etc. When she wanted to sleep, I'd let her... I didn't make her stick to a schedule all the time, though we did most days. Sometimes I gave her a boiled egg because it was an easy clean-up and I had things to do. Sometimes I'd tell her I needed a nap, and she graciously shooed me off. Because I was able to see the transition of my mother's dementia without any meds clouding the issue, I found that she really did have a grip on things when she needed to. Yes, sometimes she called me Mama and all that, but at the heart of things, she didn't want to be a burden and recognized that I was giving up a lot to be with her. It was a blessing to be able to spend the time caring for her; I would not have wanted it any other way. She died in my arms without pain, with grace and in peace. Don't put unrealistic expectations on yourself. If you need to, get someone to help clean, get your groceries delivered, help with the practical matters and with caring for your parents or just keeping them company. Take time to just think. You don't have to do it all today. And yes, one day, they will be gone, but they will be more truly a part of you at that point than you can even imagine.
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Hospice is the best option for you, they take care of almost everything. A nurse will guide you in your mothers care, they'll deliver the supplies she needs to the house, they'll help you get medical equipment in the home your mother needs. For yourself, keep a caregivers schedule, laundry time, housework time, etc... Possibly someone could be hired to come in and sit with mom for a few hours now and then so you and even your dad can get out, have lunch, etc... Hugs to you for taking care of your parents.
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WerdNord: While stress, in and of itself, cannot be classified as a "disease," it can most definitely manifest itself into one! Here a few tips to help you get through the extremely challenging and complex days ahead---
#1 Eat clean foods
#2 Take a multi-vitamin with vitamin D and for your age group
#3 Stay mobile
#4 Make "you" time, even if it's an hour of pampering at the nail salon
#5 If you need to, go to a private place and "let it all out," e.g. cry/scream-whatever gets you through the day/night (Rolling Stones)-had to throw that in there for a chuckle, but not meant to take you down the road of pill popping!
#6 Join a support group- check-you've already accomplished that one!
#7 If you are a spiritual person, get into your bible. If you aren't, perhaps now would be a good time to start.
#8 Talk to friends
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I agree, find a good caregiver ASAP, don't make my mistake, caregiving for 7 months without a 24 hour break. I found that, in order to recharge, I really needed to have a 24 hour period every week, where I could recharge. Taking care of someone in debilitating pain is heart breaking; the witch hunt on pain patients has devastated my whole family, and left my loved one in agony and suicidal. Hospice will not help w the pain meds adequately! but they are good for sending in a CNA for bathing dressing each morning. If you and your husband switch off to give the other a regularly scheduled 24 hours off period, you might be able to avoid burnout.
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if you like to read, join a book club
find a meditation or Yoga center
find a support group for care givers
whatever your interests are - there could be a group that meets, that you could go to
look in the classes available in your area, painting, pottery, I like to make jewelry w beads, and have sought out others with same interests - but you have to make the first step. If the house does not sell- you could either rent it out or lower the price.
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I admire your intentions.

One things doesn't make sense to me. You want to spend four weeks with your parents, then two weeks away form them? I don't think anyone here would believe that possible without serious back-up or assistance.

Whatever you are doing every day during the four weeks, will need to be done every day for the two weeks. Right?

How are you planning to manage that?
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Dear Werdnord, So glad you posed your Q as there is so much good advice in the responses. Sooo much truth from Martinamarie and everyone. Truer words were never spoken than caringson12 "Expect little appreciation from uninvolved relatives". But they will "should" all over you with unhelpful suggestions of what YOU should do. My favorite of the ridiculous is "why don't you just start going over there just one day a week?" I love that we're all here for each other and hope you'll update.
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As hokey and old-fashioned as it sounds, a daily and weekly routine will make your new :job" easier. Routines free up your mind from makeing endless decisions, which sap your energy and your brain's capacity. When one's brain is tired, then people make poorer decision. Two simple ones. Get up at the same time everyday of the week. Same goes for your father. Have a rotating two week menu. This makes shopping easier. It also frees you from the decision of "what should we have for dinner."
Good luck
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*Investigate*
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WerdNord: This situation may not work out for all involved. Caregiving is extremely difficult and taxing on the person doing the caring. Investigste other options.
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Thanks so much for all the helpful responses. You've sure helped me put things into perspective. I also found out that I have a symptom-less infection. No wonder I've been feeling exhausted for no "apparent" reason!
You've also reminded me of the blessings I can count. My husband and I are both retired. Mom and Dad both have 95% of their mental capacity. Mom isn't that helpless. She just needs a wheelchair and/or lots of physical support. Don't worry. We're not rashly selling our house. Transitioning from bi-coastal to living here full-time will take the better part of a year if we do it at all. I'm really taking the advice about self-care to heart. As soon as I get back on my feet, a support group and exercise facility are going to be my first priorities.
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Amicable....you have done more than your mom could have imagined. Please be good to yourself and surrender the idea you must do it all.
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I got so passionate with my answer that i realized i didn't answer your question completely. I reached out to alz.org and looked for support groups in my area. They have them listed by county, i believe. I didnt find them overly useful because my mom was not as far along with her dementia as others in the group. You can also find support groups through hospitals, doctors office, churches and office of the aging. I reached out to online communities because between taking care of mom and working, I don't have a lot of time. I also realized over time that i lost connection with most of my friends. I still talk with them from time to time but I guess I said no too many times and they stopped asking. So, for my mental health I do the following:
Learned meditation, which I always thought was a bunch of crap, but not any more. Learned some basic yoga stretches that Icould do, the stretching and opening up my joints just help to open my mind and live in the moment. I changed my diet and each much healthier and feel so much better. I learned tapping to help destress and help me with neuropathy pain. I started journaling about mom and how I was feeling, that has helped tremendously. I take time everyday for myself to either read, meet up with my daughter, just whatever I want to do. I walk outside everyday for 15 to 30 minutes. I hope that helps get you thinking about your needs mentally, physically, and spiritually. Take care of yourself :)
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I will sound like a mean old unloving crank here and say if you can put them in a nursing home, DO IT. When my mom went in, I was 65 and the dancing attendence upon her demented self for years previous, all alone, nearly KILLED ME. I found her a place that took Medicaid (which I also got her on, all alone) and when she was admitted, I felt like an elephant which had been sitting on my chest got up and left. I was SO happy and SO relieved. Did I say I was 65? my time is coming. I don't know what the future holds for me. Family and friends, gone - dead, moved 'down south', retired, ill with cancer, got their own sh*t to deal with. I only hope I have a few more good years till my time comes, whatever it holds. Cancer, dementia, diabetes, dying alone in a cruddy apartment - just give me a few more good years.
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All of us can feel you pain, WerdNord. I had made a promise to my mom many years ago that she would not be put in a facility. She was always so adamant about that. My younger sister promised her in the last 4 or 5 years. Mom has been living with me for the past 3 plus years. My mom is now 81 and in the later stages of dementia/ALZ. It is very lonely and frustrating in the beginning especially. Your whole life changes and you have to be able to cope with the changes. I went from working 80 plus hours a week and 7 days a week to about 40 hours on a flex schedule and 7 days a week. It's the hardest thing I have ever had to do. However, I have found a few things that I have put into place to help me work through this journey with my mom.
1. I take time in the morning, before she gets up, to do things for me. My routine is typically, meditation, yoga stretching, tapping, breakfast, and something motivation be it a poem, video on YouTube, or whatever. I had to work hard to get this time and be consistent but what a difference it makes. It just sets the tone for my day, it helps me stay calmer all day and it just helps me stay grounded.
2. I take about 45 minutes or so later in the day, normally at the end of my work day before I go home, and I walk outside. Sometimes it's 20 minutes, but whatever the time, it helps me clear my head and I can get my mindset where it needs to be before I walk through my front door.
3. I stopped taking everything so seriously. I do a lot of reading on forums, books, etc. to educate myself. I need to know what is coming in the future, what to look for, etc. That way, like when mom started acting really bazaar and up all night, I could pull from the knowledge I gained and knew to have her checked for a UTI. If I didn't have the knowledge, I never would have thought of a UTI.
4. I do have paid aides come in so that I can work, not independently wealthy yet :), and that is a big help. I have cameras that allow me to watch, when I can, and check on the aides and my mom. It gives me piece of mind, priceless.
So, basically, you need to put triggers in place for you. You have to take care of yourself before you can take care of your parents. It's not optional, trust me. I have 3 siblings that live near by and 2 of them do not help at all and the other helps on Sunday afternoons. Mom's finances cannot afford an aide for all the times required. Stay strong. As you travel this journey with your parents, you will know what you need to do when it's time. I plan to keep mom at home until the end per her request, but I also know that there is no way to tell if this disease will progress in a manner that will make that possible. I have prepared myself for that. It will not be easy, but it will get done. One way or the other. Trust your gut instincts and possibly not so much your heart :) Stay strong, you will get through this. I have faith in your gut instincts.
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Just had to let go and turn 93 year old mother with Alzheimer's -after 4 years of 24/7 caregiving over to bad son who stole 250,000$ from her. I was close to an emotional and physical breakdown and the end of our marriage if our life didn't change. I quit my job in my 40,s to care for my own father with hospice care. I don't regret that but my financial security went away-making it day by day ever since. That I regret because none of my 5 siblings would help-him or me. I'd suggest reading Gail Sheehy's book "Passages In Caregiving" before you make a decision. I am wondering how long it will take me to recover this time and having to start relationship all over. caregiving is a HUGE life changer and never what you expect.
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I do not see a comment addressing personal health of the caregiver. I suggest she see her doctor and ask for a medication (antidepressant) that will help with her depression issues. When she feels more emotionally balanced it will take a huge energy sapping strain from her.
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Cheryl you obviously have learned a lot along the way and put it to good use.
I was interested in your hospital bag. Funny mine only consists of my lap top, phone, chargers for both and my wash bag. Although I also have a teeny tiny tiny fridge that comes later and hubby keeps filled with forbidden foods like whole milk,butter, jam made with sugar, yogurt with actual bits of fruit oh and don't forget the salt and sugar. Of course I know better I am a RN but the little I am able to tolerate makes eating possible. My answer to the nice lady from the kitchen when I won't eat cream of wheat that taste like wallpaper paste.
The hospital seems to provide everything else and insists on those rear end exposing gowns yellow in my case to indicate a fall risk and they have warmed blankets in case you are cold. and even packets of warmed wipes,such luxury for a medicare patient.
By the way I am not old it is just that my date of birth is rather a long time ago.
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My heart goes out to all of you. Some things that have made my life more bearable and cut down on stress are devices. Special pharmacies that organize your scripts, put them in packets for days and time and mail them to your house. Automatic pill dispensers so you don't have to jump up and give your loved one pills 6 times a day. The best are monitoring cameras where you can talk back and forth using your phone. The camera I use now I can watch my loved one from work or from my car to make sure the aide is feeding and caring for her while I am away. I can ask her how she is doing while I am at work. It makes us both feel safe and connected. I schedule 10 hours of "Me" time a week. This time is sacred. I can do anything I want during this time when I have the aide there. Mostly I sleep. I don't allow the aide to ask me questions or disurb me during this time. You need to set some firm boundries if you want to come out of this intact. I have been doing 24 hour care now for 8 years. I was told my sister wouldn't live a year so you never know how much time your loved one has. Prepare for the long haul. I found these tools to be helpful, even sanity saving for me. I hope some of these ideas help you. Also, my Dad gave me some advice that has brought me peace. " If she dies, she dies. You know in your heart she would not have had the quality of life in an institution that she has had with you. If the day comes when you can no longer take care of her, put her in a nursing home with no guilt. In her right mind ( before the brain injury and dementia) she never would have wanted you to sacrifice yourself for her. Also, when she has a scary seizure or falls and cracks her head open I give myself a lot of positive self talk such as "I am a fierce warrior, a tigress, a grizzle bear." When I need to be strong for her and then later when I am in a better place allow myself to relax, and revisit the incident and process the fear, horror and sadness. Also, I keep a hospital bag and a death packet in my car for her. The hospital bag has her ipod, DVD player, extension cord, movies, soft blanket and grippy socks in it. There is also a phone charger, an extra blanket and a neck pillow for me. Her death packet has family photos and comforting religious objects (prayer cards etc). I hope this helps you! All my love to you!
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If there were awards for best story....
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Well, I am still chuckling over Veronica's little tale. Hate to admit it, but I have felt that panic more than a few times. I do sometimes feel like the bus is moving, but out of control.

Grandma, there is a question over on the discussion side of the forum that is wanting information regarding hospice. Sounds as though you could give the poster some insight.

I would like to give a collective hug to everyone who has responded to this question. It is a very difficult decision to make, to put your own life on hold in order to care for your parents. We moved Mom in with us, but we probably waited too long to do so. Friends and neighbors were carrying a far heavier load than we were initially aware of. It's been nearly 10 years now, but some days I feel like I'm 20 years older. Good luck with whatever decision you make.
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Churches may also have support groups. Many times finding resources takes some time; that's why contacting local Agency on Aging can be helpful.
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WerdNerd - One thing to consider-churches often have ministries that offer services to folks who are in need of assistance, such as sitting with the individual, transportation, shopping, Adult Day Care, etc...if this is something you feel comfortable with.
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FYI - studies are showing that Cholesterol meds are contributing to Alzheimers and Dementia. There is no way they can target a certain part of your body. They also deplete the cholesterol in ur brain which is needed for your brain to function correctly. My doctor told me to take nothing for the lowering of cholesterol. Hormone therapy is linked to Dementia too. I do not want to live like my Mom. It's so sad to see the residents at her AL. Meals are the night of their days. They start sitting down an hour before they serve. I don't want to live my final days like that.
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I feel for you all and I only have one parent. Mom lived here with me for 20 months. She was basically easy just my house is a split 4 levels. She doesn't do stairs well. Daycare was a God send. Gave us sometime but she was home by 2:30. She was not happy in the lower room but it was the most convenient for getting her in and out of the house. I knew something would have to give after the holidays. I'd be 67 and my husband 70. Never knowing what life will bring, we want to enjoy the time we ourselves will be able to do and enjoy. If our parents had their way, they would probably not want to be here depending on others. Since our local AL had a discount on rooms, I placed Mom there. Does she like it, no more than she liked it here. She has more freedom but her Dementia is causing communication problems so not sure how she is doing socially. Yes,we have more freedom but I am it. No siblings that can check on her for me if I want to take an extended vacation. I still have her house to maintain which is a pain.
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This decision would seem to need more careful thought. Why would you turn your lives upside down, and make such a drastic change without more thought. You clearly have reservations. Have you considered placement for your mother? Hired help for your farther?

Are you leaving your long time home, other family, community ties for a place where you have nothing. What will you do when your mother dies? Stay there?

Why? I firmly believe no one owes their life to their parents. You clearly have reservations, this doesn't seem to be a well considered plan.
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WerdNord of course you are feeling overwhelmed. You are the only adult in a school bus packed with second graders and the driver has just become unconscious at the wheel. You are returning from a field trip and still 50 miles from home. What on earth are you going to do now the kids are tired and restless and beginning to fight amongst them selves.
You rushed to the front of the bus and turned off the engine so no one was hurt, but the driver weighs 300 lbs and is slumped over the wheel so there is no way for you to drive even if you knew how. You call 911 and the ambulance is there in 20 minutes and you continue to do what you can for the driver but you are beginning to shake and your hands are ice cold even though the day is warm. you breath deeply to ward of one of your anxiety attacks. the driver is removed from the bus by the EMTs and eventually makes a good recovery.
"Ms WordNord we are hungry "a little chant rises from the back of the bus then another little voice joins in "I need to pee" "So do I" and suddenly they all do.
So you send the girls up the hill to go behind some trees and when they are all back up go the boys. You are getting a bit calmer but still in a panic. Now what.
One extra large boy swagers up to the front (he must have missed several grades) "Yo Ms Nord, I can drive this thing, me dad lets me drive his semi when he doesn't have a trailer" Tempting as it is you tell him "NO" "Well I kin show yer how" That sounds more tempting as the driver had told them they would be stoping to eat in ten minutes before he passed out so civilization must me close. Now the battery has gone dead on your cell so you can't call for help.
You decide to give it a try and slide behind the wheel but have to sit on the edge of the seat because your legs are shorter than the drivers. The boy sniggers. "Pull that lever and pull forward" Oh yes you see the lever and pull but nothing happens so the boy gets behind the the seat and suddenly you shoot forward. Now turn on the key, well you know where that is because you turned it off before. The big old diesel roars into life and you move your foot to the gas pedal. nothing happens except the engine roars even more. The boy mutters under his breath and luckily you don't catch it because you are certainly not what he just called you. "Foot on brake foot on clutch now ease up" he continues to instruct and finally the yellow monster jerks forward. Heart pounding in your chest you let the bus go it's own speed and it hits 5 miles per hour before you apply the brakes but relief is in sight the yellow arches are ahead.
You dare not pull off the road as there is not a chance you will maneuver the parking lot.
The kids pile out and run inside, you follow as fast as your wobbly knees will allow and order 36 hamburgers and a very strong cup of coffee.
Well you did it the kids are safely back at what goes for civilization in these parts.
You are white as a sheet and the guy behind the counter asks if you are OK. The whole story spurts out from your tearful lips.
You still don't know how you will get your charges home but at least now you can call the school. The principal is a very kind man and tells you to stay right where you are and get yourself something to eat, a relief driver if not himself will be there within the hour. You sink into a seat with a double order of fries and a second cup of coffee. The big boy swaggers past and slaps her on the back "Yer did goodMrs " he mutters.

Now the moral of this story is that there is always a way round everything and you are at the stage where the driver just slumped over the wheel.
!. Don't let yourself get in the situation, that is have enough help on hand
2. Prepare for an emergency,that is become educated.
3. When you are in too deep, find help apply for home health aides etc
4. Don't panic, always have a plan B
5. Review your mistakes, so you don't keep repeating them.
6. Develop a plan of action.

Sit down and think about what you can and can not do then divide it into things you simply are not prepared to do. Make yourself a schedule and I stress yourself not your loved one however much you feel h/she is capable. They either have become unable or have no intention so concentrate on what they continue to demonstrate they are able. For example they may be able to unload the dishwasher but not load it or put the dishes away. Don't make unessesary work for yourself by insisting they do something which they never do right. you can not teach someone with dementia. In other words pick your battles and stick to your arrangements. If you take Mom shopping on Tuesdays then that is what you do. No harm in picking up something that she really needs later in the week.
Assisted Living may or may not be the answer for your parents in your case but get your ducks in a row well ahead of time.
Make sure all the paperwork is properly in place with the help of a good eldercare lawyer.
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Ok..here I go again...
Call Hospice.
If your Mom is eligible for Hospice services you will get help.
You will get a CNA that will come in and help you bathe her, help get her dressed a few days a week.
You will get supplies delivered to you, no going out to buy wipes, bed pads, ointments, creams, lotions or incontinence supplies, gloves and things like that.
A nurse will be assigned, she will check vitals weekly and order medications that will be delivered to you.
You will get equipment that you will need a Hoyer, or a Sit to Stand, Hospital Bed, commode, wheel chair....
You will have a Social Worker that you can talk to.
You will have a Chaplain assigned, you can choose to talk to the Chaplain or not, you can let them visit or not.
You will have the support of a Hospice member 24/7

I can not begin to tell you how much help and support my team has been. These people that come in to help us have become like members of the family. In some cases better because they show up and help out!

And you need a local support group that you can go to and vent, get ideas, and just cry if that is what you need to do. (On line like this is great but sitting with a group of real people is better.) And since you will be moving into a new area this is a good way to meet new people.

I am glad that you are able to move to help them out but do not let it destroy your life, your marriage by focusing solely on your parents.
In many cases Assisted living will benefit both your parents as well as you and your husband since you can still be a Daughter, A wife and not so much a full time caregiver. Sure there may be guilt about placing them but to maintain sanity that might be necessary.
And your Mom will only become MORE difficult to care for then you will do the same for your Dad.....
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Caregiving 24/7 is the most overwhelming task a person can take on. It is mentally, emotionally and physically draining. No one should feel bad if they cannot do it. There are teams of people in care homes, why should we feel we can do it alone. If you are determined to help dad out set up a reasonable schedule that allows you to get out away from the situation doing things you enjoy. That way when you come back you are refreshed and ready for your shift. Hire outside help. What good is money if you are to wiped out to enjoy it. Use some to pay for help so you come out of this whole process as healthy as possible. Its not going to be easy but if you plan well you will make it.
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WerdNerd, you and your husband sound like generous caring people and your thought about moving is commendable. However, I agree with others that you should not do this without considering all of your other alternatives. I became a full time caregiver for my spouse two years ago when he came home from a hospital stay in very poor condition. I didn't want to have regrets if he died, which was what appeared to be possible. Now he is physically much better but mentally continues to decline. Even though in our same house and town, I have found it difficult to keep up friendships and relationships due to time constraints and the fact that some friends just can't deal with my spouse's Alzheimer's. I can't imagine if we had moved to a new town and given up everything. I am happy that I made the decision at the time, but in retrospect should have done more research on other options. Maybe there would not have been any but I might have been better prepared. There are some routines one can establish, but frankly with Alzheimer's or other issues of old age, they will change, often quickly, as capabilities decline. Hugs to you as you wrestle with this incredibly difficult decision.
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