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Wants me near always

My husband only wants me with him to care for him - no relatives or caregivers. He wants me around all the time and if I leave the house, he forgets where I am and thinks I am dead, even with reminders from the relative or caregiver with him. He worries the whole time I am gone. I am his everything, which is a lot to carry, but he is a gentle soul and it is hard to watch the anguish.

I am getting ready to place him in memory care soon and I am afraid he will become traumatized without me there with him. I am struggling with the suggestion of not showing up for a week or two right after he is admitted. I do not know how to approach this situation.

Comments

  • Chris20cm
    Chris20cm Member Posts: 150
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    I am in a very similar situation with DW, and I hope someone has some constructive suggestions on how to make the transition. I have consulted many sources, forums, MC Facilities, PCP, family members, Senior Solutions organization, read tons of material, but everyone is apparently stumped. They don't seem to know how to handle the separation anxiety, the paranoia, the temporary hostility. There is little or no creativity offered. I have been ill, but still carry on 24/7 caregiving, but there may come a time that placement is necessary.
    You can DM me if you want to discuss.

  • terei
    terei Member Posts: 893
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    Much of this separation behavior is probably caused by anxiety. I would talk to his Dr for medications to ease that.

  • Bowerbird
    Bowerbird Member Posts: 53
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    Thank you everyone for your advice. I understand the reasoning and recognize that I too perhaps have separation anxiety. I have not mentioned moving to him, but I am beginning to suspect he knows deep down something is going to happen. I finally decided to tell him (when we get there) that our doctor, whom he likes, has recommended he go there for a while for the care and activities. I don't think telling him that the house needs work or that I am going on vacation will fly with him.

    When he was hospitalized in November, I would stay there all day with him and as soon as I left for the evening, he would become agitated, eventually going into delirium. So there is that fear as well.

    But, yes the facility said someone would be with him the whole first day and that is good. But he is shy and a loner, not a big people person. One issue at home is not having enough to do, so I am hoping he will participate in the activities.

    She said to give him a half dose of Seroquel, but that can cause a bit of delirium sometimes.

  • harshedbuzz
    harshedbuzz Member Posts: 6,506
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    @Bowerbird

    This is all hard stuff.

    My dad was as you describe in terms on only accepting care from mom. It was to the point if I brought him a sandwich he wanted me to take it back to the kitchen and have mom bring it to him. I didn't play along as she needed a break and he couldn't hold the memory for more than a minute.

    When his care became such that a facility could provide better than mom could provide we placed in in a good MCF. He was upset and angry for several days, but he soon bonded with staff and considered the facility his home for the time being. We'd told him that he was there on doctor's orders for physical rehab which allowed us to validate his frustration at not being home while reminding him he was getting best care possible.

    Dad never really clicked with other residents (he knew they had dementia despite not recognizing his own issues) and didn't participate in any activities beyond live musical programing which he enjoyed a lot.

    A MCF won't have all of the same issues a hospital has. My mom, who doesn't have dementia, sometimes develops hospital-induced delirium. The lack of restorative sleep from lights, noise and nursing tasks are not generally an issue in a MCF. Often medications used inpatient also contribute to delirium.

    I hope it goes well for you.

    HB

  • Bowerbird
    Bowerbird Member Posts: 53
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    Thank you for sharing your experience. I too feel physically ill every time I think about all this. I've had to postpone bringing him in, once because of an ER visit and now because of the terrible weather. It feels like it was not meant to be just yet for some reason and just puts off the agonizing inevitable, especially when he says things like "don't leave me." I brought some of his things in earlier, but I am not sure he even notices much of his home surroundings.

  • Chance Rider
    Chance Rider Member Posts: 299
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    I’m glad that things went smoothly when you took him to MC and that he had already asked the staff for assistance.
    I hope your anxiety eases during the coming week. As Diane suggested in her post above, remember you did this FOR him not TO him. Thank you for sharing your experience. Sending hugs.

  • annie51
    annie51 Member Posts: 643
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    So glad to hear that things went so smoothly. That is step 1! You will feel guilty, broken hearted, lonely…but it does ease up a little over time. Once he settles in and you see the good care he’ll get, you’ll gradually realize it was the best thing for both of you. You’ll never stop missing him but you’ll begin to feel your stress level going down. Keep us posted on how you’re doing.

  • annie51
    annie51 Member Posts: 643
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    Yes adjustment can take a few weeks sometimes. My DH was getting very aggressive with the caregivers for the first couple of weeks and the facility doctor increased his meds and added some until he was calmer. They have to do this for the safety of the staff. Every time they called me to approve a med adjustment I’d get stressed out and wondered if I did the right thing. After a few weeks though he had just occasional outbursts and adjusted well. Things should calm down after a while for your DH. I’ll pray for you that it does.

  • KDSG
    KDSG Member Posts: 3
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    My husband is always looking for me. He is still home and I plan on keeping him home for now. He is stage 4/5. If I go out in the yard and gets very anxious saying he can’t find me, if I am taking a shower he is calling me. I always tell him what I am doing but he can’t remember anything. Does anyone else experience this with their loved one?

  • iowagirl1961
    iowagirl1961 Member Posts: 26
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    you might want to start a new thread with your experience to get more replies, but I definitely experience the same thing with my dh. He is Stage 5/6. Several months ago I could give him a note that said I am taking a shower and that worked. But now he immediately misplaces the note or puts it in his pocket and forgets so I can really only shower when he is in the room. It’s like having a toddler in the house.

  • EXPERIENCED1
    EXPERIENCED1 Member Posts: 1
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    I've cared for SEVERAL dementia patients and am now with my mother, and the hardest is when they first begin getting it and you can't find ACCURATE answers. What you are speaking about is normal in the beginning, but you need a proper diagnosis for type of dementia. Our physician gave mom a drug for sleep and her schedule is VERY SET. She takes it at 4 or 5 and out by 7. She and others I've fully cared for MUST HAVE A SET SCHEDULE. They must have everything done for them at the beginning to remain home, like set TV remotes, heat and air set and fixed where they leave it alone, fire alarms checked regularly for no low battery chirp, meals without having to heat, regular cleaning and sheet changes, etc. Mom calls EVERY MORNING and I MUST ANSWER or she calls repeatedly unless you do the anxiety is so bad. They are terrified they are losing their mind and alone. They seek the comfort of home because they lose SHORT TERM MEMORY FIRST, THEN LONG TERM. So, home is a recognizable place, and a new location they become completely confused unable to remember due to it being a short term memory process to remember a new place, which is why they show up at places they haven't been to in 20 years thinking it's still their doctor's office or home! They have the long term memories they built when they were younger as all the newer memories go away. Our doctor gave several drugs and we had to trial and error because she went nuts on some, but others helped. YOU MUST DO THE WORK OR RESEARCH AND READING THE BEGINNING, MIDDLE, AND END OF VERY SUBTLE SYMPTOM RECOGNITION LISTS and writings. Had I not learned through the first person I helped and done that process Id of NEVER known she was getting it and she signed a POA to people that she met ONCE AT CHURCH that are PROFESSIONALS THAT LOOK FOR ALONE DEMENTIA PATIENTS TO PREY UPON. They sold her home and depleted her account of over $80,000 in a week!!! Laws to protect dementia patients when they FIRST get suble symptoms MUST CHANGE to protect them when they STILL HAVE MOST OF their memory and can pay bills, yet the other symptoms like hours they forget cause them such fear and anxiety they sign ANYTHING OR BEFRIEND ANYBODY to take care of them out of a promise to not be put in a home. Sadly, ALL of the people we put in SUPER UPSCALE nice facilities became EXTREMELY AGGRESSIVE, ANGRY, VIOLENT, HURT, and DIED NOT LONG AFTER being put there. It was not the disease progression, but I believe the stress and fear of being taken from the only place they remember, home. If I had of known this when I was younger Id of been able to plan to save for a 24 hour dementia care person, but the cost is so prohibitive now it was impossible in every case. Others could have gotten a reverse mortgage to pay for it but greedy family want to inherit her home, and once they get the dementia diagnosis it's illegal to sign a contract to sell or reverse mortgage without a POA. Or the POF for finances. There are several POA types giving different permissions. The anxiety and calling a hundred times is better with mods and just answering and comforting them and telling them not to call unless they really need something and they call less throughout the day. But, it's out of fear you'll get angry and not care for them, sadly. They are just fearful of absolutely EVERYTHING. Mom calls every five min to ask if the groceries are there waiting on Door Dash! I assure her and just answer if she calls, which becomes overwhelming and agitating to OUR LIVES and disrupts OUR SCHEDULES. But, when you see how rapidly they go at the end with memory and death you would want all the time to talk back again. It's SO DIFFICULT, but just BE PATIENT, GET HELP, GET SELFCARE DAYS, TAKE BREAKS AWAY FROM THEM WITH HIRING HELP, UTILIZE AN ATTORNEY SPECIALIZING IN PROTECTING ASSETS AND GETTING GOVERNMENT SUPPORT SERVICES THAT PAY EVERYTHING. You must wait a year for some services, like home help care people, and such, but it's WORTH USING AN ATTORNEY FOR UNFORSEEN FINANCIAL BURDENS AND TO NAVIGATE HEALTHCARE OPTIONS. READ, READ, READ, BLOGS, AND PROFESSIONAL MEDICAL SITES ON SYMPTOMS AND PEOPLE'S IDEAS THAT HELP WITH LITTLE THINGS LIKE THE TV REMOTES, AND TAKE THEIR CAR KEYS AWAY AT THE BEGINNING OF THEIR SYMPTOMS AS THEY FIGHT THAT BIG TIME!!! GOOD LUCK. PRAYING FOR YOU ALL. PRAY FOR A CURE FOR DEMENTIA!!!
  • tucson anne
    tucson anne Member Posts: 75
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    Bowerbird may I ask what type of facility it is; corporate owned? Name of facility? Staffing levels? My failed attempt at placement last year they had promised someone to be with him the whole first day and that did not happen; they didn't even have a person come sit with him until I'd been there an hour or more. They didn't attempt to sit him next to people who were cognitively aware—just plopped him at a table with several women with drooping heads and no eye contact. This was a highly recommended facility. Now I'm looking again everywhere in Tucson, but….

  • Bowerbird
    Bowerbird Member Posts: 53
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    I'm sorry to hear that what they promised did not occur, a typical marketing ploy perhaps, but it causes havoc when you have to move your LO to another place or bring them back home because it was not as you expected. I was assured of several things when I "applied." but the reality was rather different. My DH has adjusted as well as can be expected after 3 months, but when I visit, he still wants to be with me all the time.

    My LO is in a corporate owned MC only facility and is one of only a very few here. I am in Ohio and the company does not have facilities in the western US as far as I can tell from their website. There is some staffing turnover, as the work can be grueling, but I've also heard that some of the caregivers have quit and then returned later. The place has a good reputation, so I can only imagine what it is like at other facilities.

Commonly Used Abbreviations


DH = Dear Husband
DW= Dear Wife, Darling Wife
LO = Loved One
ES = Early Stage
EO = Early Onset
FTD = Frontotemporal Dementia
VD = Vascular Dementia
MC = Memory Care
AL = Assisted Living
POA = Power of Attorney
Read more