Alzheimers and caregiver denial
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Anonymous
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My father was diagnosed with Alzheimers 10 years ago. He's been in mid-stage for years, but in the past several months, he's declined quickly towards end stage (having issues with hygiene, doesn't feel thirst or hunger, wanders constantly). The problem is that his caregiver, my mother, seems to be in total denial. She's complaining that she has to monitor him 24/7, that he wanders at night and she gets no sleep, that she has to help him with activities of daily living, etc. Meanwhile she's maintaining a busy lifestyle of volunteering, church activities, and other social events.
I've been visiting often this summer to help with her house, declutter, give her some respite from caregiving. I've also offered to hire in-home care, hire housecleaners, look at memory care facilities. All offers of hiring help are refused. However, she accepts any and all help I offer while I visit. I know I have a tendency to "help too much" so I'm trying to pull back and set boundaries. (I have a spouse and kids, and I live 3 hours away.) Recently she asked me if I had any recommendations for security systems (door alarms to prevent wandering) and I said I didn't. I felt bad but I just returned from a week-long visit of constant complaining and I've had enough. Has anyone else gone through this? When a caregiver likes to complain but doesn't want to do anything about it? She has the money, ability, and network to hire care but she won't. I feel like if she really wants to maintain her current lifestyle, she needs to hire in-home help or put him in a memory care facility. Thanks for any and all advice! |
Anonymous
| I have lived this completely and have tons of advice. I am too tired to write a long response, but if you give me an email I can contact you sometime this week. I probably wrote a similar post years ago. I have sooo much to say on the subject. |
Anonymous
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Ugh hang in there. You are in a tough spot and I don't have a lot of great advice but I would say that we had big issues with my mom trying to leave her apartment in the middle of the night, so we eventually had a lock installed so that she is locked in every night. Her caregiver has the key.
Only other thing you may try is trying to get an outside expert consult to provide neutral advice. maybe a doctor or a geriatric social worker. |
Anonymous
I'm in the same situation and it's getting really urgent. I've made an email: eldercare23@outlook.com I am not OP but would love any input. Thank you so much. |
Anonymous
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I am the poster who has been through it and I tried to create a new email without my name and somehow messed up. OK...so I assume both people asking have a diagnosis-correct?? If so congrats. It was a whole ordeal to get that for us. So...here are my ideas...you may tell me many are impossible and I will tell you my parents were impossible. You have to keep chipping away at them, start gentle and get more nagging and try these things...
1.) Contact the primary doctor and others they see often. Let them know the situation and you need a doctor to recommend more help/memory care or whatever is needed based on what you shared. They cannot call you back and cannot share anything, but someone will note it in the chart and follow through. Document you did this. 2.) Find a good case manager at a nursing care agency and brainstorm with her/him how to get her/his foot in the door. These people should be trained on how to work with difficult elderly. you want the person to assess and figure out what services to recommend on a "trial basis" wink, wink. Even if you have to tell mom it's to ease your stress and has nothing to do with her do whatever it takes to get an expert in. 3.) Look into senior day centers-lifesavers. Ask the neurologists for places. Not all of them work with Alzheimer past a certain point. They often match elderly people who might get along. Again, this is just something to have them promise to try once for an hour "wink wink". Get ideas from the director as to how to sell it and when it is best to come for a visit. You sell it as something for dad so mom can go to doctor's appointments and take care of her health when really we want that, but we also want mom to rest, get her hair done, get some coffee, meet up with a friend or whatever. The social stimulation is great for people with dementia, etc. Even if the forget the new friend, they still can really enjoy themselves and live in the moment. Posting more in a second... |
Anonymous
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Ok more....
4.) Start exploring memory care places on your own and chat with the case manager to get her/his input. Beware though. In home care is a profit machine for case managers and agencies. While they can make money being a mediator with the residential facility, there is more money flowing if you keep the senior at home so a less than ethical one may make top notch memory care centers sound cruel and heartless. We ran into this and when we finally went with memory care it was a GODSEND. Nothing like they described and our loved one was MUCH happier there than with a burned out, angry and resentful spouse. |
Anonymous
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More...
Our mothers were socialized to be martyrs and judge those who don't endlessly self0sacrifice. So...it may not work to sell all this as a way to help her, give her a break, etc. It may be you have to go another route... Mom...I don't think Dad is safe when you go to the grocery store or take a shower. I think he would be safe at a day center and it would give us all peace of mind. Mom I know you are doing a great job, but if something happens to you I need Dad to have some caregivers he already likes. i can't come here and take over. I worry day and night about this. Please, do it for me. Try someone for a few hours. Another thing... bEWARE of overextending yourself to help mom. I went there. each time I helped her appreciation decreased and my resentment increased. To this day she values nothing I did because really she doesn't value caregiving. She was raised to think less of those who do these jobs so the more I did the less she thought of me. Sounds impossible, but this was over years and I should have not ENABLED her dysfunction. It made it too easy for her to reject getting steady help. My help in the long run was NOT helping. |
Anonymous
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A little more...
Remember change is frightening, especially as we age. To them it's not just about hiring a helper and the fear the person could steel or be abusive, it's accepting you and your spouse are aging and your spouse is DISABLED. That is why we gradually introduce change through trials. The first goal is to get start getting the feet in the door of people who can help. I have to tell you some of these nurse's aides are a real hoot and have a sense of humor about working with stubborn elderly. I could never kiss up as much and laugh off what some of these people handled. Also, this is KEY...if you find good help, give them cash gifts/tips on the sly now and then with notes of appreciation and be an extra big tipper at holidays. It is such a blessing when you find someone who wins over your parents. |
Anonymous
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Posting yet again...
When really frustrated I also would call places like Alznet or other Alzheimer's hotlines to brainstorm. If you parents are as nutty and stubborn as mine this can be truly emotionally draining and start to affect your health if you let it. My mother was quite nasty to me when I started introducing the idea of help and frankly she was losing it at dad which is not good for anyone. When I started to point out her losing it at him, her anger turned to me which was really tough. I definitely saw a change in both of them as they got more help and he had a social outlet. My mother mocks this whole idea "self care" and "self help" and there was no way in heck she was going to a support group of a therapist. When we got her more supports for him, just seeing friends on her own, taking a nap, or going clothing shopping without a worry really lifted her spirits. It was worth the manipulations to get there. It's an impossible situation for anyone and the fact our mothers are not versed in self care, boundaries/limits etc can make it much worse. |
Anonymous
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Even more:
Make a list of everything a doctor needs to know to determine level of functioning so the doctor will make the right recommendations for level of care. In OPs case that may mean memory care and skipping in home care. Just paint the WHOLE picture otherwise the doctor may only recommend a little extra help. Also, paint the picture of what this is doing to the caregiver. My mother was determined to appear stoic, and I think a lot of people did not realize how far gone she was. I won't go into detail, but I wish i had made it clear sooner just how miserable and depressed she was and that she was doing little to take care of herself. |
Anonymous
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Mom is 18 years into alzheimers.
1. 400 mg of magnesium in the evening Magnesium glycinate will not cause loose stools Magnesium citrate will help with constipation This stuff has been a godsend. Mom sleeps through the night. She has "regularity". It reduces sundowners. It is truly the best supplement ever and more effective than the memory meds. 2. IF he ends up in hospital for anything force the hiring of careigvers for when he comes home. 3. Step back yourself. 4. If you get further complaints tell her you can get people sent over from an agency starting on __________. |
Anonymous
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20:24
Call the agencies around you. Find out time lag to get started. Hours offered etc. Knowledge is power. |
Anonymous
I'm the poster who never shuts up and I agree with all of this. Also, psychotropic meds!! The neuro sold it as just a teeny tiny dose to take the edge off and assured them it's not what you give crazy people. There is a huge stigma for mental health issues with this generation and it helps sometimes for both caree and caregiver to be on meds, Yes, yes, yes STEP BACK and as this person says ...offer to send help in your place. Brilliant! It is quicksand if you get involved. That was my big mistake. I just wanted to provide relief and make mom happy and it backfired. |
Anonymous
| Oh and YES to once they are in the hospital make sure you make it clear the situation so it becomes a matter of the person MUST go to Memory care or nursing care or whatever. |
Anonymous
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Thank you all so so much for all of your recommendations. The poster whose mom is a martyr and values self-sacrifice - yep, that's mine too. Great idea for going the "keep dad safe" route instead of the "give you respite" route.
Just an update, since I'm not local I reached out to her church community (that's right, the one she volunteers so much time to) and asked them for help. Mom may hate me for it, but I'm doing what I need to do to keep dad safe. I'm not expecting a thank you from her anytime soon. ha ha |