Convince me

maugi200 · January 3

Convince me that I should let a stranger (social worker) in the intimacy of my home.
Convince me that I should tolerate this invasion of my privacy.
Convince me that I should go through another interrogatory that invades my life.
Convince me that I will not be infuriated by all these questions that could imply that I’m not taking care of him properly.
Convince me that this person will not tell me what to do and supervise everything I do.
Convince me that I won’t have to take something to go to sleep because of this encounter.

Has any of you managed to take care of your LO alone in your home until it was time for the nursing home?

That’s what I was planning to do unless you convince me otherwise.

Happy new year and thanks for any insight you might have,
Maugi

Please, I only want the point of view of caregivers.

blacksparky · January 3

My DW is in stage 5/6 with EOAD. I’m planning on keeping her at home by myself until I can no longer give her the care that she deserves. Has it been hard? Hell yes it’s been the hardest thing that I have ever done. Am I going to be able to do this, only time will tell. Has it affected my life and health? Another hell yes. Would I do anything differently if I could? Yes I would have gotten more respite for myself. Easier said than done though. It is possible to take care of our LO but it takes a lot out of us and we really need the respite. Try to get anyone of your relatives or friends to give you a small break each week so you can recharge. I have finally got people to be with my DW a few hours each week and it has helped tremendously. I’ve hired a house cleaner to take that load off of me also. Do whatever needs to be done to ease your day to day burdens.

maugi200 · January 3

https://alzconnected.org/discussion/comment/262496#Comment_262496

You gave me a lot of food for thougth. Exactly what I needed. Thanks.

Michele P · January 3

My mother-in-law had Alzheimer’s for 20 years. It took years before my father-in-law would bring in a caregiver to help him and take the load off of us. He had the same reasons for not bringing in help. This was the outcome: my father-in-law could not handle her full time care. He depended on us more and more to help. It was too much for all of us. His health suffered along with our home life. The final caregivers became family to us. They loved her and my father-in- law and cared for them like family. After he died, we kept her at home with these caregivers who cared for her until the end. You have to bring in caregivers to save yourself and give the needed care to your wife. You don’t realize the impact on your health until it’s too late. Waiting took years off my father-in-law’s life.

Timmyd · January 3

After DW's ALZ diagnosis, we were referred to a social worker. During our first visit our social worker wanted to send someone in to visit us in our home to assess how prepared we were for living with the disease. I firmly, but politely declined. The subject came up again on a couple of subsequent meetings with the social worker. I eventually determined there was nothing I was getting for $165/hour visit with our social worker that I could not find for free on the internet.

I do have a private caregiver who is with us a few days a week who works for me. However, I have always been suspicious of letting anyone in our house who was there to judge how good of a job I am doing and report the findings up their chain of command.

maugi200 · January 3

https://alzconnected.org/discussion/comment/262502#Comment_262502

I cannot get help in the family for my dh. That is why I said to take care of him alone. What the social worker is offering is not needed. They offer to wash him (which I handle properly), dress him (which he does himself slowly) and feed him (which I can handle). So so far I feel they only want an eye on me. What I do find hard is to keep him busy. Winters here, icy rain last monday so stuck inside. So limited activities.

But you did make a point and I’ll keep that in mind.

maugi200 · January 3

https://alzconnected.org/discussion/comment/262508#Comment_262508

Here (montréal) it’s free but from what I see it’s mostly to have an eye on me. You are reminding me that I wanted to go with private services to see what they can offer. Thanks for your input.

SDianeL · January 3

please have a Plan B. I had planned on keeping my DH at home as long as possible with help from the VA because he was a veteran. I was diagnosed with aggressive cancer and had no choice but to place him in memory care so I could get treatment. Many people do care for their LO at home. It’s extremely difficult as the disease progresses and they become incontinent and bedridden. He’s lucky to have you as his caregiver. Just be sure to take care of yourself, hire help, hire people to do other things like housekeeping and yard work, order groceries and have delivered, etc so you can focus on caregiving. 💜

JulietteBee · January 3

@maugi200, here in the states, social workers are our allies. They do observe you, and the difficulties you face or may face. They then report their findings in an attempt to advocate on your behalf, to get you more help. They come to assess the situation and figure out the family's caretaking needs.

While you are currently capable of caring for him on your own, as Michelle pointed out, it comes at a cost to YOU, his caretaker. Sadly, the statistics show that a large percentage of caretakers die BEFORE their charge. Why be resistant to having ppl come alongside you to help lighten your load?

Here in the states, such homecare is not free, but most of us would do just about anything to be able to get the help…ijs

harshedbuzz · January 3

@maugi200

I don't understand you parsing more help or an extra set of eyes on your DH as a negative for a host of reasons.

Some thoughts.

Your husband is a vulnerable individual and frankly, this social worker is part of a system of guard rails for him. If you vehemently oppose the help offered and something happens— say DH has a bad fall (this is very common in late stages) and ends up needing medical care as a result, you will not have established yourself as the competent and kind caregiver, you may end up with more oversight as a result.

A social worker can be an important part of your Plan B. In a case where you're the one who is hurt, or ill, in the absence of family back-up, a social worker can step in and make sure your DH is cared for until you're able to resume his care. Remember that 1/3 of caregivers die before their PWD and many others become ill or injured during their caregiving journey. It would be so much better if you, your DH and the social worker were already comfortable with each other.

HB

maugi200 · January 3

https://alzconnected.org/discussion/comment/262514#Comment_262514

All your inputs was of great help and after a night of sleep I made a decision. I will allow a visit and see what they have to offer and then make a decision. Currently I handle everything properly, it’s just him not doing much that weight in on me.
thanks,

maugi200 · January 3

https://alzconnected.org/discussion/comment/262521#Comment_262521

All food for thought. I hear your concern.

thanks,

Quilting brings calm · January 3

I’m sorry that you felt judged. That was probably not the reaction the social worker intended. Making sure you know of all available help, resources, and, yes, caregiving requirements and responsibilities is her job. Trying to ensure that YOU emerge at the other end alive and relatively healthy is also her( or his) job.

As others here are stating, a lot of caregivers die before their loved one. Sometimes there’s a plan in place for the care of the PWD, but sometimes there’s not. Gene Hackman and his wife are an example of the worst possible outcome.

Many of the members here would prefer to take care of their loved ones all on their own until the end. However it’s not possible to do 24/7/365 all on your own. Think about everything you do all day - groceries, supplies, your own bathing, and sleeping. So you will eventually need someone even if it’s just a few hours a few times a week. Even private pay individuals will have opinions on what happens in your home.

And yes, it’s possible that you may need or want to place your spouse before the end. That’s not a negative opinion on how you take care of of them. It’s just a possible outcome.

maugi200 · January 3

https://alzconnected.org/discussion/comment/262515#Comment_262515

we are gay and I’m asperger like. Gay like their privacy and asperger wants stability. This intrusion is so overwhelming for me.

I appreciate your input. I needed help and your insight to overcome all of this.

Thanks.

maugi200 · January 3

https://alzconnected.org/discussion/comment/262529#Comment_262529

thanks for taking the time to comment,

BPS · January 3

You said your Asperger like. My daughter has Asperger's and is high functioning but when sudden changes or disruptions come up she needs a little extra time to deal with it. I get your concern and think you are doing the right thing by taking a little time to think about it and get others thoughts. None of us can think of everything. My wife does not like cold wipes and I didn't think about or even know of wipe warmers until a caregiver mentioned it. That is a small thing but all the small things matter. I really think everyone should have a plan B. It is a good feeling to know if something happened they will be OK. My wife was sitting eating dinner one evening and had a stroke so when she got out of the hospital she moved to memory care. It worked out but I don't know what would have happened to her if it was me that had the stroke. She was far enough along that she didn't know how to use the phone anymore.

maugi200 · January 3

https://alzconnected.org/discussion/comment/262537#Comment_262537

I understand your daughter very well. Alzheimer is the worst because it changes all the time. He can’t use the phone, the tv remote.
Thanks for sharing.

maugi200 · January 3

https://alzconnected.org/discussion/comment/262515#Comment_262515

Thanks for your insight.

HollyBerry · January 5

The social workers I've known in various settings have been truly wonderful people who are there to help us find resources, answer questions, and sometimes bring up a hard question or two. My mother spent the last years of her life in Assisted Living and one of the best stories I remember was getting a call from the SW one day, saying "I noticed your mother is still wearing her wedding rings. I know how important they can be but there's also a big risk of them getting lost, since her finger has gotten smaller. What are your thoughts about this? Some people have taken them to the jewelers and had a guard added so they don't slide off so easily." I loved this! She noticed, she cared enough to reach out, she offered an idea, and left it to me to make the decision. In the end, I did take them to the jewelers but my mother had forgotten about them by the time I brought them back, so they went right into my strongbox for safekeeping and she never missed them. Another SW helped us navigate finances for her last year in AL, hospice details, and final details at the end. It was amazing to have someone available who knew the answers to my questions and had the experience to help us. A third one, in Geriatrics at the University Hospital, did all the Health Care POA documents for both of us, even though I wasn't a patient of that clinic, just because she could.

They are great people to have on your side!

maugi200 · January 6

https://alzconnected.org/discussion/comment/262741#Comment_262741

I did not sleep well. I was thinking about calling today but yesterday it happened again. Someone was at our doorstep (I have a doorbell camera) did not answer we were at Walmart. They keep coming without an appointment since august. It started after an appointment with his doctor. These unplanned visit really offends me. What I'm I a monster. I said I was gonna call when help was needed. I assume they are sw. It's been the 4th times. I'm afraid that if I call they will get a piece of my mind. But then again I need to know for sure who they are. Oh, and I hate telephone calls.
Maugi.

harshedbuzz · January 6

@maugi200

I say this as a parent of an adult son with ASD formerly known as Asperger's Syndrome.

You may be playing a dangerous game here. One of the aspects of being a caregiver that I found hardest to reconcile was that the medical team always put dad's needs ahead of mom's as a caregiver. In their minds it was all about him now. It felt very unfair to me.

Make the call. You don't want this to escalate.

FWIW, dad's memory center had social workers, mostly interning, as part of the practice. They weren't helpful for us as they resources offered weren't in our community, but they were unfailingly kind and understanding.

HB

Quilting brings calm · January 6

We’ve had a ton of people ring our doorbell … most of whom were solar panel salesmen ( more likely college students recruited to sales). So they may not be social workers. Did they leave business cards?

If they truely are social workers sent upon notification by his doctor, it may be a great help for you to answer the door. They may be trying to present you options that will allow you to keep him at home longer while trying to keep you mentally emotionally and physically healthy too. There’s going to be a point when you need a few hours to yourself every so often. Caregiving is hard.

maugi200 · January 6

It broke my heart seeing him like this. I take a nap after lunch. After waking up I watched the camera in the living room and the dining room and he was nowhere in sight. Rushed downstairs and found him lying down on the floor helpless. Asked him what was wrong and he said I can’t get up. This is horrible just horrible. He is ok.

Now I had to call.

They do not know at all who is coming to our house.
I was right not letting anybody in without an appointment.

Maugi

maugi200 · January 7

https://alzconnected.org/discussion/comment/262850#Comment_262850

thanks for your insight. They only aim our house. I have a camera in front. Never had a chance to talk except for monday but I have to keep an eye on him at the store. Otherwise he takes a wrong turn!
I did talk to our health resources and they said they have no record of these visits.

I should have an appointment in about 2 to 3 weeks time.

maugi200 · January 7

https://alzconnected.org/discussion/comment/262831#Comment_262831

thanks for being truthful about the fact that they lean less on the caregivers side and the services that you had for your dad.

I accepted the fact that I handle thing’s differently. How people react to the way I act is not my problem.

Have a nice day.
Maugi

Iris L. · January 7

Older adults fall for many reasons. Read online about "fall prevention in older adults" and follow what suggestions seem applicable to his situation. IMO, a PWD who is a fall risk should never be left unsupervised.

Iris

harshedbuzz · January 7

@maugi200 said:

I accepted the fact that I handle thing’s differently. How people react to the way I act is not my problem.

In the real world this could become your problem. If the social worker feels you are isolating your DH and limiting access to him, their concerns could be escalated to an investigation of neglect. This is especially true if someone (a disgruntled family member, concerned friend, neighbor, etc.) has a concern and alerted adult protective services. Once you are on their radar, it very much becomes your problem.

HB

maugi200 · January 7

I’m out of this forum,
Adiós amigos!

Convince me

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