Need help creating the steps and knowing what to do to put dementia Mom in a home?

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It is the caregiver emotional well being affected.

Dear Aging Care Forum,

My husband and I have been caregiving for my 96- yr old dementia mother with the assistance of a weekday caregiver for 7 hours/day M-F (for the most part) for 16 months with no respite. Our patience, emotional state, life, health, marriage, and finances are taking a huge hit.

My husband isn't working, I'm working full time - mostly from home or this wouldn't work at all. He gets some breaks, I usually only get away with him when I'm lucky enough to get a caregiver for 5 house for the latter half of the afternoon on a Saturday. I have all the cooking responsibility, house cleaning, washing, dishes, grocery shopping and bringing in the income.

My husband is sick of this life - I don't blame him. I am too. Who can do this without a break? You answer the same 5 questions 20 times a day, EVERY DAY! Week after week. I have 4 able bodied siblings left who won't do a thing.

After the weekday caregiver leaves at 4pm, my mother needs someone with her -- seemingly at all times during waking hours or she feels lonely. She usually likes being outside on our screened in deck, but now when she is out there for 20 minutes by herself as she requested being on the deck, she is crying and says she wants to come in and live like a person - hence not like an animal. That was a new comment from her. We've never left her alone ever. She is within earshot, or eyeshot. We have a very small home.

My mother finds no interest in life, keeps wanting to go to her childhood home - so no home will really be where she thinks she should be. She would feel terrible if we put her in a home, but I don't know what else to do.

I am losing my marriage and my life and my sanity - ditto with my husband. I am hoping we can still salvage our marriage. After tonight, I do not know.

I feel caught between responsibility to my parent and responsibility to my marriage and what about my life? I don't want to feel guilty. But I don't think I can see this to her end. Even though my mom has dementia and is pretty well disabled and in a wheel chair and needs assistance with everything, but eating, she is very healthy. Her medical labs come out better than mine or my husband's.

My life feels forever changed. I am at wits end and I don't know what to do next.

Thank you for your thoughts--
LastOne

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My dad lived with us for 7 months, after a few months alone (with hired help 2hr/day) following my mom's unexpected death. We moved him into assisted living yesterday.

We did not know at the start of this that he was developing dementia. Combined with longstanding OCD, and the fact that my mother catered to his every whim, it made him very difficult to live with. He tried repeatedly to run my SO off, putting huge strain on our relationship. Demanded we reorganize our schedules to suit his needs (including my work schedule!). And acted like a spoiled 5 year old when he did not get his way. The stress level caused a return of health issues I had only just (thought I'd) put behind me when this started.

I knew several months ago that we could not go on like this. Looked around at local options and decided assisted living in a nearby senior community was the best choice. Then waited for them to have an open apartment of the type suitable for dad. Got the call a week ago that they had one coming open, spent a few harried days chasing paperwork, and got the 'all clear' on Thursday to move him Friday.

Dad is not happy about the move, but he was not happy here either. And there he's safer (we live on a farm, lots of trip hazards), better looked after (3 shifts of fresh eyes) by people who aren't emotionally tied up in his games, is already started with the staff physical therapist, and has social opportunities if he cares to take them.

Meanwhile, SO and I are heading to the beach tomorrow to unwind and start rebuilding our relationship.
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I'd say try a couple things if they are practical - while you have the caregiver, go out for just an hour together every day, or at least several days a week - maybe to a nice lunch place if you can afford it or just a coffee shop. Maybe even arrange to start marriage counseling and make sure you go out together afterwards too so the stress of doing counseling is balanced by the a pleasant experience. If you can afford and get more respite to have a few more extended breaks and "dates" with hubby it could make things tolerable too.

And what you are looking for may be called "memory care" in either an assisted living or nursing facility. You can do some research online, tour the places the look good, maybe you will even run across places in the neighborhood that are not online. Show Mom the pictures rather than dragging her along, try yoru best to pick one that will be to her liking and tastes in decor and atmosphere, and make sure you have an agreed-to-idea of approximately how often you will visit and check in on her when things are going well. Mom's confusion and anxiety at being alone (thinking being outside was the same as being treated like an animal) and wish to go back to a childhood home is very common and very understandable in an Alzheimer dementia. Its nothing you have done wrong. I sense you not only have no fun, but also feel bad about yourself and what you are doing for Mom because it is not "working" - but truly, there is no fix for her progressive disorder, and you can feel good about taking her in, giving her love, and trying to meet her increasing needs as best you can.
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Hi Nowmymomsmom,

Thank you for your reply and your ideas. They are helpful and it is good to know others have felt very similar. I feel so overwhelmed in this life right now and am having difficulty coping with much of anything. I need some freedom in my life and some choices. I feel so in prison here and do nothing but work and have responsibilities and no time for fun or opportunity. I don't know how to find the joy in life and this caregiving thing . --LastOne
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jeannegibbs, I'm sorry for the loss of your husband. Your love and relationship sounded very wonderful. I am so happy you had such a wonderful person in your life - he was truly special. I bet he was very happy you stood by his side as he journeyed on at the end of this of Earthly plane. Friends such as that are a one in a million. God blessed you both.

Your mother is also a lucky person and well loved by her family and you. So very fortunate indeed. Thank you for sharing your story. You are a much stronger person than I will ever be.

LastOne
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Oh, I and so many here have been there!Check out some Memory Care Facilities many now are "aging in place" meaning they will not move them to a nursing home as they progressively get worse.They need a special license to be able to do this if the patient is not ambulatory....check out services like Our Home, Alzheimers Care, A Place for Mom they are very helpful, a free service for you and will do the leg work for you as far as narrowing down options, costs etc...then you can visit them and check out the AHCA website to make sure they are up to par-no violations etc...if you can keep her from a full SNF I am sure both of you will be much happier! Depends on her degree of need! Pick a place that will stimulate her mentally and physically. Do they have things she enjoys? Crafts, outings, music, baking etc....don't leave her in a place that let's them wither away all day...it is tough but it must be done...maybe have her go in as a "respite"-short term patient first so you and hubby can have some time alone...see if she is happy and making new friends...hopefully she will like it and want to stay! Then you need to gain your life and marriage back! It is so stressful as it is I can not imagine putting my husband/ boyfriend through this stress hence not dating in 8 years I have taken care of mom! You deserve a life, she has lived one and hopefully it was a beautiful one. In her right mind she would not want your relationship ruined. You can then visit her and have quality time with her, go on outings and everyone hopefully will be stress free......you still will need to be her advocate and make sure everyone is on their toes....and taking care of her so it is still nearly a FT job! At least you will be able to go home and decompress!If you let me know what state you are in I may be able to save you a lot of leg work as I have been down this road for many years now! Best of luck to you and your search. :-)
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My husband was diagnosed with Lewy Body Dementia in our 30th year of marriage (second marriage for each; blended family). He was my soulmate, the love of my life, my equal partner, and my best friend. I was becoming increasingly unhappy in our relationship until I heard his diagnosis, and then all the behavioral changes made sense and I only wanted to take this journey with him, supporting him, protecting him, advocating for him. He was able to live the entire ten years with dementia at home, dying in our own bedroom on hospice. I am grateful it worked out that way for us, but I know we were the minority of lucky ones.

My mother began having cognitive problems while I was caring for my husband. My sisters stepped up and advocated for her while she lived in her apartment. I kept informed and occasionally was able to take her to appointments, but my three sisters did the bulk of supporting her in her apt, bringing in some outside help, buying her groceries, etc. When Mom no longer could live alone even with support, one sister brought Mom into her home, as I've stated above. By then my husband had died and I gave Sis respite one weekend a month by having Mom visit my home for 3 days. One other sister did this as well. Our mother was a caring, loving person as we grew up. None of us has ever had a bad or tense or stressful relationship with her. She also was never one to say "Now you owe me" or to make us think we should put her ahead of our own lives. All of us care for her simply out of love, with very little sense of "obligation."

Is this what you wanted to know?
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jeannegibbs, What is your caregiving experience. How long have you done it and why did you want to do it? Thanks, LastOne
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Do not even consider abandoning your mother to a nursing home. Don't do it! Abandoning someone you have had a loving relationship with is too cruel for even a mean mother, and it doesn't sound like that describes your mother.

BUT, and this is critical to understand, placing someone in a skilled care facility if that is what they need, does NOT mean you have to abandon them. Absolutely not. You would switch roles and now become their advocate, making sure they are getting good and appropriate care, visiting very often, bringing little treats and extras. Your relationship with your mother should definitely continue no matter where she is. Put the term "abandon" totally out of your mind.

Our mother lived with one of her four daughters for 14 months. Mom's dementia and especially her physical needs increased and Sis decided she could no longer meet Mom's needs. The three of us went into immediate search and research mode and found a suitable placement for Mom. Even though we all assured Sis that she had done a super-good job and we were grateful and didn't blame her for giving up the primary in-home caregiver role, she felt terrible. She doubted her decision. She wondered if she was letting Mother down. She was pretty depressed about it for a few months. That was over a year ago. She and her husband are now doing the things they expected to do during retirement. She is active with her grandchildren, and she visits Mom regularly, as all 4 of us daughters do. She just posted on FaceBook a new wheelchair arm bag she made for Mom out of an old pair of her husband's jeans.

Can you place your mother in a professional care setting without abandoning her? Absolutely!! Can you continue to have a loving relationship with her? Certainly -- it might even be better when you don't have to do all the hands-on care. Will your emotional well-being be impacted? Yes. I think that is inevitable. You will probably be pretty sad to start with. But as you see your mother being well-taken care of, and you begin to rebuild your relationship with your husband, your own well-being can be greatly improved.

Keep us posted about your journey. We care!
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JessieBelle, Thanks again for the 2nd post. Your kind words and care mean a lot and provide some guidance. My husband left here an hour ago. This house has never seemed more dark than tonight.

I know I will feel guilty until I meet my Maker. I never thought I would have to do this.
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I understand completely. Someone said on another thread the other day that there never seems to be a good option. We just have to choose the one that is the least bad. In your case I think your and your husband's health and sanity should take top priority, because you will probably be here long after your mother has gone. I hope that you are able to repair your marriage, but you need to have the chance to do it.

You're not abandoning your mother. She'll be in a place where she is cared for and you can visit often. And there won't be that stress of what it is doing to everyone's lives. That will be a big plus. It may take your mother a month or two to settle in to her new facility, so don't be discouraged if she doesn't adapt right away. It is often the way it goes.

BTW, you'll feel guilty whatever you do. Just know that you are doing the best you can for everyone involved.
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