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I have been the primary caretaker for my husband who has LBD with Parkinson's along with recent significant Capgras Syndrome. He is 18 years my senior. (59 and 77). Together for 30 years. I put him in A.L. for a week and he did horribly so I brought him home. He was not even able to do his ADLs while in the assisted living home. After being home for 1 day all that knowledge came back.
After two weeks at home he barely knows who I am. All friends and family tell me I MUST put him in Memory Care. This man is my soulmate, my life, and I love him with every fiber in my body. I don't think I can live with myself if I put him back in A.L. but I just cannot continue to care for him. I can't even make a decision, all I do is cry. I feel like I will be giving my disabled "child" over to people that don't know anything about him or his needs.
How do you live with making this decision???

This is not about you, this is about your husband. If you are at the point you, yourself, cannot make good decisions, something must change. The people at MC are trained to deal with people like him, they do not need to know "everything" about him, they will figure it out. As for taking him home after a week you did not give him enough time to get settled in, and perhaps you were too involved in the process, being a helicopter caregiver is not the answer. It is very obvious that you love him dearly, do this for him, because you do. You can visit him on a regular basis after he settles in, but, I might suggest that you manage your visits when he is placed. The home we are placing my step-dad in request that in the beginning we stay away for a week or so to let the patient settle in. My best, I know how difficult this is.
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Reply to DollyMe
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My mother is in a wonderful memory care facility and has a suite that's like a fancy hotel room. She's cared for by a team of caregivers that genuinely care for and about her, and I'm relieved that she's in capable hands. The MC has 24 residents and about 12 caregivers. It shouldn't be killing you to place your DH where he will be safe & cared for properly......it's too much for YOU to do alone, regardless of what others say about getting 'in home' help. It's not enough; they reach a point where they need care 24/7 and that is more cost prohibitive (in home) than placing them in a memory care facility. You can go visit him daily, if you'd like *after you give him a chance to settle in* and that will help you feel better about the whole decision. It's tough, there is no two ways about it, but don't let 'guilt' prevent you from doing what's right for HIM. He'll adjust......it does take time, however, so allow him the time to do so. Love often means doing what's best for the loved one, no matter how hard it is. I'm so sorry you're faced with such a hard decision, dear woman. Sending you a big hug and a prayer for the strength you need to make the right decision for both you and DH.
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Reply to lealonnie1
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LexiPexi Jul 14, 2019
Can you tell us what area of the country you live? Our caregiver to patient ratio in Arizona - isn't anything like yours.
Requirements for big facilities or group homes is:
day time 2 caregivers for ten patients
night time 1 (awake) caregiver for ten patients
I don't feel this is enough. I have not been able to find a facility in the Scottsdale / Paradise Valley area (of Phoenix) - that has a higher caregiver to patient ratio - no matter what the cost. If the patient requires additional care - it is suggested we hire a private caregiver. That would be fine - if it was only for a few hours a day, but obviously, one never knows exactly when that few hours is needed most - as routine can change from day to day. Has anyone else in the greater Phoenix area found a wonderful location?
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Seniors always become very confused and disoriented when they are out of home in hospital or respite or permanent care, for a approximately 2 weeks at least it takes to settle in... then they become more oriented.... I think this can account for his confusion. It would have been helpful if someone would have told you that... so, I'm sorry because it would have helped to know this. So, if you try again, know that the first 2 weeks will be like this, and then it will get better. In those first 2 weeks, let him settle in, don't visit or stay too long.

With regards to the decision, I was thinking... that so many people have said, that when a loved one needs alot of care... they really appreciate being able to remain being "a wife" or a "husband" and not be turned into a full time carer. If a person is forced to become a full time carer, they often feel robbed of the time they can just be together as partners. So, this would be a great benefit to you - that when/if you made the decision for him to go into care - that all of the physical needs will be taken care of - and you will have of your time and energy to be the wife that you so beautifully want to be for him. If you are a carer, I doubt there is nothing left as you wil be exhausted and your efforts will not be optimal. He needs professional support around the clock as you know. Best of luck and wishes to you both.
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Reply to Arselle2
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Sorry you're in this situation, it sounds heartbreaking. It seems you have 3 options:

1. Use the money that you were going to pay for the facility and hire someone to come in and provide him the care he needs in the home 24/7.

2. Move him into a memory care facility that also has an independent living side and you move into that side. That way you can still see him every day and even have meals and activities together. Maybe you could sell your home to afford this.

3. Go back to the way things were with him in MC and you at home. You can still visit him every day and eventually the staff there will get to know him and his needs. They will help him with his ADLs and if his care gets too great, then you may have to move him to SNF.

It sounds like you have a great love! Sometimes loving someone so much means letting someone else take care of them. It will be hard, really hard at first, but it will get easier and you will have a new normal. I wish you the best.
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Reply to SofiaAmirpoor
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Hey Jimswife,
Everyone is very skeptical about this idea, but I wish people would try it more. Why not try to fight these chronic diseases? Regular medicine has not come up with anything half-way decent for fighting dementia. But other researchers have found that many of these chronic illnesses are caused more by lifestyle. Change the lifestyle, lessen the disease.

Check out Dr. Bredesen's protocol for dementia. Just Google Dr. Dale Bredesen. I think you'll like what you see. Also try Googling the Italian Doctor Antonio Constantini (https://easyhealthoptions.com/italian-doctor-curing-parkinsons-disease-with-thiamine/). He has had a lot of success treating patients with a heavy dose of Vitamin B1 (Thiamine).

Based on what I looked up about Capgras syndrome, it sounds like if you can lessen the dementia, this might be a little less as well.

Don't just accept what your Doctor says as well. They're only human too. I own several assisted living homes and I am implementing a lot of diet and lifestyle changes for my residents to improve their conditions instead of just loading up on drugs. We still follow the doctor's orders, but we supplement it with very natural eating and exercise. The results have been amazing. We've even sent a few people home who have become well enough to live at home.

I've implemented these lifestyle changes myself. I'm 52 and it's amazing how good I feel. Like I'm 25. I just had my blood pressure checked and it was 96/57! You can fight these diseases. You just have to work at it.
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Reply to Windsurfer
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smeshque Jul 12, 2019
true, I have seen it work, Must be committed to the changes and be up for the challenge, but it does work. Dr.'s do not know everything,
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Hi Jimswife. I am also in the same boat. It is VERY heart-wrenching and more emotionally difficult to leave a spouse in a facility than to leave a parent, sibling, or relative there. The emotional connection is stronger and much much higher. It does not mean you love your parents or relatives less; just different kind of love.

Others have suggested that you should spend the money on hiring caregivers at home instead of on MC - RIGHT ON. It would give you a chance to relax. I am doing that now because I am still working. I have yrs to go before retirement. But if my husband continues to live when I hit retirement age, I will probably not going to retire to keep my sanity intact.

Lastly, MCs are NOT cheap! Where I live, the monthly fee is $10k-15k per month, depending on needs Some locales are cheaper, but as his needs increase, so will the cost. If your husband is incontinent (single or dual), you will be expected by the MC to have a caregiver to help him with those activities. Their employees cannot attend to your husband’s needs 24/7 because they have other residents to look after also. Without your own caregiver, you husband will be sitting in his filth until someone comes to clean him up. So, getting outside help will add more to the cost. MCs should be the absolute last resort, in my opinion.

You are doing the right thing by asking for help - first here and then I hope home care. Please let us know what you decide and how it has impacted your life. We are here to learn from each other. Good luck.
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Reply to Worriedspouse
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Been there - done that & I mean all of the above suggestions. My husband was misdiagnosed with dementia when he had actually had a series of TIAs after being on a trip at altitude. Medication for dementia sent him into a psychotic state. First ASL Place totally ignored him totally. I “stayed away” as suggested and in 3 days he was dehydrated & sleep deprived & re-hospitalized, in rehab for 21 days & in another MC faciiity. Although they were sweet & caring there the food was horrible!!! He didn’t need to be diabetic on top of heart disease, partial kidney failure, & cognitive issues. I knew he didn’t have dementia because he could play trivia perfectly, recognize everyone, & relate correctly events going on correctly, but couldn’t do other cognitive tasks. The longer he stayed there though the worse I felt about leaving him after every visit. After 18 months and a report that his congestive heart failure had worsened, I brought him home so he could die in peace. Guess what - he started improving. I have 24/7 caregivers & home health. It was absolutely the best thing for him, but having “strangers” in my small garden home is killing me!! So stressful dealing with the constant changes in schedules & never knowing who will be there. So, nothing is perfect. I’m doing what’s best for HIM. My suggestion would be for YOU to get counseling & rest immediately. When you’re exhausted you can’t think straight & you can’t be a good caregiver or spouse. Let people help you!!! Every situation is unique & this site is a wonderful resource for suggestions. Know you’re not alone & you are doing the best you can at any given moment. I wish you all the best.
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Reply to aceypoo1
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Were your roles reversed and he was caring for you under the same circumstances, what would you want him to do for you?
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Reply to Lilacalani
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Hi Jimswife,
I am very sorry you and Jim are in this situation. Worriedspouse gives great advice as in the same spot as you. If me, I would do as others have suggested and get some in home help. I don’t believe 24/7 is needed. Residents in MC or NH do not get 24/7 care. They are in a building with staff 24/7 and getting cared for when time permits. Your LO is not able to ring or ask for help so often waiting their turn as someone also said I believe. I care for my Mom in my home with Alz, vascular dementia, NPH, and she is having a very difficult time with mobility and can barely walk at all on some days. She’s been incontinent for many years but would wake during the night often two to three times to want to use bathroom. She would already be wet so it was a change at that time only. This was exhausting for me. As her condition progresses she doesn’t wake during the night anymore for the bathroom. Using barrier creams will keep her skin protected so I don’t see the harm in waiting for the change when she wakes up. I find the more sleep she gets for her sick brain the better she does during the day. I also of course do better with the additional sleep. This site has been invaluable to me for advise on how to manage day to day ADLs etc. I know the road ahead for us is going to get much more difficult. I think about that but don’t get too dragged down by it. One day at a time is my new motto. It was work for me to get there as I am a planner to a fault typically. I will bring in resources to assist with transferring and bathing as needed. My Mom has never asked or expected me to care for her. I can’t imagine being in your position with a soulmate and struggling. I would try some in home care and come here for support. This is about you and Jim. Both of you need to be considered here. If your heart is breaking I think you should at a minimum consider in home help. You mention your family and friends and their thoughts. Are they able and/or willing to assist you with caring for Jim? I didn’t mean to make this about me and my Mom but just wanted to share my thoughts and hope it helps. I had a soulmate myself and know the strength of that bond. Keep coming back here for support. Sending you a couple of hugs. Remember you are not alone.
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Reply to Sweetstuff
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Hi JW,
Have you thought about getting help inside your home?
Maybe you wouldn’t need it all day but a few hours break every day can refresh and revive your sinking energy and mental outlook.

Might be worth a try before committing to Assisted Living again.
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Reply to SueC1957
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